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Practical thematic...

Practical thematic analysis: a guide for multidisciplinary health services research teams engaging in qualitative analysis

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Peer review
Catherine H Saunders , scientist and assistant professor 1 2 ,
Ailyn Sierpe , research project coordinator 2 ,
Christian von Plessen , senior physician 3 ,
Alice M Kennedy , research project manager 2 4 ,
Laura C Leviton , senior adviser 5 ,
Steven L Bernstein , chief research officer 1 ,
Jenaya Goldwag , resident physician 1 ,
Joel R King , research assistant 2 ,
Christine M Marx , patient associate 6 ,
Jacqueline A Pogue , research project manager 2 ,
Richard K Saunders , staff physician 1 ,
Aricca Van Citters , senior research scientist 2 ,
Renata W Yen , doctoral student 2 ,
Glyn Elwyn , professor 2 ,
JoAnna K Leyenaar , associate professor 1 2
on behalf of the Coproduction Laboratory
1 Dartmouth Health, Lebanon, NH, USA
2 Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine at Dartmouth College, Lebanon, NH, USA
3 Center for Primary Care and Public Health (Unisanté), Lausanne, Switzerland
4 Jönköping Academy for Improvement of Health and Welfare, School of Health and Welfare, Jönköping University, Jönköping, Sweden
5 Highland Park, NJ, USA
6 Division of Public Health Sciences, Department of Surgery, Washington University School of Medicine, St Louis, MO, USA
Correspondence to: C H Saunders catherine.hylas.saunders{at}dartmouth.edu
Accepted 26 April 2023

Qualitative research methods explore and provide deep contextual understanding of real world issues, including people’s beliefs, perspectives, and experiences. Whether through analysis of interviews, focus groups, structured observation, or multimedia data, qualitative methods offer unique insights in applied health services research that other approaches cannot deliver. However, many clinicians and researchers hesitate to use these methods, or might not use them effectively, which can leave relevant areas of inquiry inadequately explored. Thematic analysis is one of the most common and flexible methods to examine qualitative data collected in health services research. This article offers practical thematic analysis as a step-by-step approach to qualitative analysis for health services researchers, with a focus on accessibility for patients, care partners, clinicians, and others new to thematic analysis. Along with detailed instructions covering three steps of reading, coding, and theming, the article includes additional novel and practical guidance on how to draft effective codes, conduct a thematic analysis session, and develop meaningful themes. This approach aims to improve consistency and rigor in thematic analysis, while also making this method more accessible for multidisciplinary research teams.

Through qualitative methods, researchers can provide deep contextual understanding of real world issues, and generate new knowledge to inform hypotheses, theories, research, and clinical care. Approaches to data collection are varied, including interviews, focus groups, structured observation, and analysis of multimedia data, with qualitative research questions aimed at understanding the how and why of human experience. 1 2 Qualitative methods produce unique insights in applied health services research that other approaches cannot deliver. In particular, researchers acknowledge that thematic analysis is a flexible and powerful method of systematically generating robust qualitative research findings by identifying, analysing, and reporting patterns (themes) within data. 3 4 5 6 Although qualitative methods are increasingly valued for answering clinical research questions, many researchers are unsure how to apply them or consider them too time consuming to be useful in responding to practical challenges 7 or pressing situations such as public health emergencies. 8 Consequently, researchers might hesitate to use them, or use them improperly. 9 10 11

Although much has been written about how to perform thematic analysis, practical guidance for non-specialists is sparse. 3 5 6 12 13 In the multidisciplinary field of health services research, qualitative data analysis can confound experienced researchers and novices alike, which can stoke concerns about rigor, particularly for those more familiar with quantitative approaches. 14 Since qualitative methods are an area of specialisation, support from experts is beneficial. However, because non-specialist perspectives can enhance data interpretation and enrich findings, there is a case for making thematic analysis easier, more rapid, and more efficient, 8 particularly for patients, care partners, clinicians, and other stakeholders. A practical guide to thematic analysis might encourage those on the ground to use these methods in their work, unearthing insights that would otherwise remain undiscovered.

Given the need for more accessible qualitative analysis approaches, we present a simple, rigorous, and efficient three step guide for practical thematic analysis. We include new guidance on the mechanics of thematic analysis, including developing codes, constructing meaningful themes, and hosting a thematic analysis session. We also discuss common pitfalls in thematic analysis and how to avoid them.

Summary points

Qualitative methods are increasingly valued in applied health services research, but multidisciplinary research teams often lack accessible step-by-step guidance and might struggle to use these approaches

A newly developed approach, practical thematic analysis, uses three simple steps: reading, coding, and theming

Based on Braun and Clarke’s reflexive thematic analysis, our streamlined yet rigorous approach is designed for multidisciplinary health services research teams, including patients, care partners, and clinicians

This article also provides companion materials including a slide presentation for teaching practical thematic analysis to research teams, a sample thematic analysis session agenda, a theme coproduction template for use during the session, and guidance on using standardised reporting criteria for qualitative research

In their seminal work, Braun and Clarke developed a six phase approach to reflexive thematic analysis. 4 12 We built on their method to develop practical thematic analysis ( box 1 , fig 1 ), which is a simplified and instructive approach that retains the substantive elements of their six phases. Braun and Clarke’s phase 1 (familiarising yourself with the dataset) is represented in our first step of reading. Phase 2 (coding) remains as our second step of coding. Phases 3 (generating initial themes), 4 (developing and reviewing themes), and 5 (refining, defining, and naming themes) are represented in our third step of theming. Phase 6 (writing up) also occurs during this third step of theming, but after a thematic analysis session. 4 12

Key features and applications of practical thematic analysis

Step 1: reading.

All manuscript authors read the data

All manuscript authors write summary memos

Step 2: Coding

Coders perform both data management and early data analysis

Codes are complete thoughts or sentences, not categories

Step 3: Theming

Researchers host a thematic analysis session and share different perspectives

Themes are complete thoughts or sentences, not categories

Applications

For use by practicing clinicians, patients and care partners, students, interdisciplinary teams, and those new to qualitative research

When important insights from healthcare professionals are inaccessible because they do not have qualitative methods training

When time and resources are limited

Steps in practical thematic analysis

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We present linear steps, but as qualitative research is usually iterative, so too is thematic analysis. 15 Qualitative researchers circle back to earlier work to check whether their interpretations still make sense in the light of additional insights, adapting as necessary. While we focus here on the practical application of thematic analysis in health services research, we recognise our approach exists in the context of the broader literature on thematic analysis and the theoretical underpinnings of qualitative methods as a whole. For a more detailed discussion of these theoretical points, as well as other methods widely used in health services research, we recommend reviewing the sources outlined in supplemental material 1. A strong and nuanced understanding of the context and underlying principles of thematic analysis will allow for higher quality research. 16

Practical thematic analysis is a highly flexible approach that can draw out valuable findings and generate new hypotheses, including in cases with a lack of previous research to build on. The approach can also be used with a variety of data, such as transcripts from interviews or focus groups, patient encounter transcripts, professional publications, observational field notes, and online activity logs. Importantly, successful practical thematic analysis is predicated on having high quality data collected with rigorous methods. We do not describe qualitative research design or data collection here. 11 17

In supplemental material 1, we summarise the foundational methods, concepts, and terminology in qualitative research. Along with our guide below, we include a companion slide presentation for teaching practical thematic analysis to research teams in supplemental material 2. We provide a theme coproduction template for teams to use during thematic analysis sessions in supplemental material 3. Our method aligns with the major qualitative reporting frameworks, including the Consolidated Criteria for Reporting Qualitative Research (COREQ). 18 We indicate the corresponding step in practical thematic analysis for each COREQ item in supplemental material 4.

Familiarisation and memoing

We encourage all manuscript authors to review the full dataset (eg, interview transcripts) to familiarise themselves with it. This task is most critical for those who will later be engaged in the coding and theming steps. Although time consuming, it is the best way to involve team members in the intellectual work of data interpretation, so that they can contribute to the analysis and contextualise the results. If this task is not feasible given time limitations or large quantities of data, the data can be divided across team members. In this case, each piece of data should be read by at least two individuals who ideally represent different professional roles or perspectives.

We recommend that researchers reflect on the data and independently write memos, defined as brief notes on thoughts and questions that arise during reading, and a summary of their impressions of the dataset. 2 19 Memoing is an opportunity to gain insights from varying perspectives, particularly from patients, care partners, clinicians, and others. It also gives researchers the opportunity to begin to scope which elements of and concepts in the dataset are relevant to the research question.

Data saturation

The concept of data saturation ( box 2 ) is a foundation of qualitative research. It is defined as the point in analysis at which new data tend to be redundant of data already collected. 21 Qualitative researchers are expected to report their approach to data saturation. 18 Because thematic analysis is iterative, the team should discuss saturation throughout the entire process, beginning with data collection and continuing through all steps of the analysis. 22 During step 1 (reading), team members might discuss data saturation in the context of summary memos. Conversations about saturation continue during step 2 (coding), with confirmation that saturation has been achieved during step 3 (theming). As a rule of thumb, researchers can often achieve saturation in 9-17 interviews or 4-8 focus groups, but this will vary depending on the specific characteristics of the study. 23

Data saturation in context

Braun and Clarke discourage the use of data saturation to determine sample size (eg, number of interviews), because it assumes that there is an objective truth to be captured in the data (sometimes known as a positivist perspective). 20 Qualitative researchers often try to avoid positivist approaches, arguing that there is no one true way of seeing the world, and will instead aim to gather multiple perspectives. 5 Although this theoretical debate with qualitative methods is important, we recognise that a priori estimates of saturation are often needed, particularly for investigators newer to qualitative research who might want a more pragmatic and applied approach. In addition, saturation based, sample size estimation can be particularly helpful in grant proposals. However, researchers should still follow a priori sample size estimation with a discussion to confirm saturation has been achieved.

Definition of coding

We describe codes as labels for concepts in the data that are directly relevant to the study objective. Historically, the purpose of coding was to distil the large amount of data collected into conceptually similar buckets so that researchers could review it in aggregate and identify key themes. 5 24 We advocate for a more analytical approach than is typical with thematic analysis. With our method, coding is both the foundation for and the beginning of thematic analysis—that is, early data analysis, management, and reduction occur simultaneously rather than as different steps. This approach moves the team more efficiently towards being able to describe themes.

Building the coding team

Coders are the research team members who directly assign codes to the data, reading all material and systematically labelling relevant data with appropriate codes. Ideally, at least two researchers would code every discrete data document, such as one interview transcript. 25 If this task is not possible, individual coders can each code a subset of the data that is carefully selected for key characteristics (sometimes known as purposive selection). 26 When using this approach, we recommend that at least 10% of data be coded by two or more coders to ensure consistency in codebook application. We also recommend coding teams of no more than four to five people, for practical reasons concerning maintaining consistency.

Clinicians, patients, and care partners bring unique perspectives to coding and enrich the analytical process. 27 Therefore, we recommend choosing coders with a mix of relevant experiences so that they can challenge and contextualise each other’s interpretations based on their own perspectives and opinions ( box 3 ). We recommend including both coders who collected the data and those who are naive to it, if possible, given their different perspectives. We also recommend all coders review the summary memos from the reading step so that key concepts identified by those not involved in coding can be integrated into the analytical process. In practice, this review means coding the memos themselves and discussing them during the code development process. This approach ensures that the team considers a diversity of perspectives.

Coding teams in context

The recommendation to use multiple coders is a departure from Braun and Clarke. 28 29 When the views, experiences, and training of each coder (sometimes known as positionality) 30 are carefully considered, having multiple coders can enhance interpretation and enrich findings. When these perspectives are combined in a team setting, researchers can create shared meaning from the data. Along with the practical consideration of distributing the workload, 31 inclusion of these multiple perspectives increases the overall quality of the analysis by mitigating the impact of any one coder’s perspective. 30

Coding tools

Qualitative analysis software facilitates coding and managing large datasets but does not perform the analytical work. The researchers must perform the analysis themselves. Most programs support queries and collaborative coding by multiple users. 32 Important factors to consider when choosing software can include accessibility, cost, interoperability, the look and feel of code reports, and the ease of colour coding and merging codes. Coders can also use low tech solutions, including highlighters, word processors, or spreadsheets.

Drafting effective codes

To draft effective codes, we recommend that the coders review each document line by line. 33 As they progress, they can assign codes to segments of data representing passages of interest. 34 Coders can also assign multiple codes to the same passage. Consensus among coders on what constitutes a minimum or maximum amount of text for assigning a code is helpful. As a general rule, meaningful segments of text for coding are shorter than one paragraph, but longer than a few words. Coders should keep the study objective in mind when determining which data are relevant ( box 4 ).

Code types in context

Similar to Braun and Clarke’s approach, practical thematic analysis does not specify whether codes are based on what is evident from the data (sometimes known as semantic) or whether they are based on what can be inferred at a deeper level from the data (sometimes known as latent). 4 12 35 It also does not specify whether they are derived from the data (sometimes known as inductive) or determined ahead of time (sometimes known as deductive). 11 35 Instead, it should be noted that health services researchers conducting qualitative studies often adopt all these approaches to coding (sometimes known as hybrid analysis). 3

In practical thematic analysis, codes should be more descriptive than general categorical labels that simply group data with shared characteristics. At a minimum, codes should form a complete (or full) thought. An easy way to conceptualise full thought codes is as complete sentences with subjects and verbs ( table 1 ), although full sentence coding is not always necessary. With full thought codes, researchers think about the data more deeply and capture this insight in the codes. This coding facilitates the entire analytical process and is especially valuable when moving from codes to broader themes. Experienced qualitative researchers often intuitively use full thought or sentence codes, but this practice has not been explicitly articulated as a path to higher quality coding elsewhere in the literature. 6

Example transcript with codes used in practical thematic analysis 36

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Depending on the nature of the data, codes might either fall into flat categories or be arranged hierarchically. Flat categories are most common when the data deal with topics on the same conceptual level. In other words, one topic is not a subset of another topic. By contrast, hierarchical codes are more appropriate for concepts that naturally fall above or below each other. Hierarchical coding can also be a useful form of data management and might be necessary when working with a large or complex dataset. 5 Codes grouped into these categories can also make it easier to naturally transition into generating themes from the initial codes. 5 These decisions between flat versus hierarchical coding are part of the work of the coding team. In both cases, coders should ensure that their code structures are guided by their research questions.

Developing the codebook

A codebook is a shared document that lists code labels and comprehensive descriptions for each code, as well as examples observed within the data. Good code descriptions are precise and specific so that coders can consistently assign the same codes to relevant data or articulate why another coder would do so. Codebook development is iterative and involves input from the entire coding team. However, as those closest to the data, coders must resist undue influence, real or perceived, from other team members with conflicting opinions—it is important to mitigate the risk that more senior researchers, like principal investigators, exert undue influence on the coders’ perspectives.

In practical thematic analysis, coders begin codebook development by independently coding a small portion of the data, such as two to three transcripts or other units of analysis. Coders then individually produce their initial codebooks. This task will require them to reflect on, organise, and clarify codes. The coders then meet to reconcile the draft codebooks, which can often be difficult, as some coders tend to lump several concepts together while others will split them into more specific codes. Discussing disagreements and negotiating consensus are necessary parts of early data analysis. Once the codebook is relatively stable, we recommend soliciting input on the codes from all manuscript authors. Yet, coders must ultimately be empowered to finalise the details so that they are comfortable working with the codebook across a large quantity of data.

Assigning codes to the data

After developing the codebook, coders will use it to assign codes to the remaining data. While the codebook’s overall structure should remain constant, coders might continue to add codes corresponding to any new concepts observed in the data. If new codes are added, coders should review the data they have already coded and determine whether the new codes apply. Qualitative data analysis software can be useful for editing or merging codes.

We recommend that coders periodically compare their code occurrences ( box 5 ), with more frequent check-ins if substantial disagreements occur. In the event of large discrepancies in the codes assigned, coders should revise the codebook to ensure that code descriptions are sufficiently clear and comprehensive to support coding alignment going forward. Because coding is an iterative process, the team can adjust the codebook as needed. 5 28 29

Quantitative coding in context

Researchers should generally avoid reporting code counts in thematic analysis. However, counts can be a useful proxy in maintaining alignment between coders on key concepts. 26 In practice, therefore, researchers should make sure that all coders working on the same piece of data assign the same codes with a similar pattern and that their memoing and overall assessment of the data are aligned. 37 However, the frequency of a code alone is not an indicator of its importance. It is more important that coders agree on the most salient points in the data; reviewing and discussing summary memos can be helpful here. 5

Researchers might disagree on whether or not to calculate and report inter-rater reliability. We note that quantitative tests for agreement, such as kappa statistics or intraclass correlation coefficients, can be distracting and might not provide meaningful results in qualitative analyses. Similarly, Braun and Clarke argue that expecting perfect alignment on coding is inconsistent with the goal of co-constructing meaning. 28 29 Overall consensus on codes’ salience and contributions to themes is the most important factor.

Definition of themes

Themes are meta-constructs that rise above codes and unite the dataset ( box 6 , fig 2 ). They should be clearly evident, repeated throughout the dataset, and relevant to the research questions. 38 While codes are often explicit descriptions of the content in the dataset, themes are usually more conceptual and knit the codes together. 39 Some researchers hypothesise that theme development is loosely described in the literature because qualitative researchers simply intuit themes during the analytical process. 39 In practical thematic analysis, we offer a concrete process that should make developing meaningful themes straightforward.

Themes in context

According to Braun and Clarke, a theme “captures something important about the data in relation to the research question and represents some level of patterned response or meaning within the data set.” 4 Similarly, Braun and Clarke advise against themes as domain summaries. While different approaches can draw out themes from codes, the process begins by identifying patterns. 28 35 Like Braun and Clarke and others, we recommend that researchers consider the salience of certain themes, their prevalence in the dataset, and their keyness (ie, how relevant the themes are to the overarching research questions). 4 12 34

Use of themes in practical thematic analysis

Constructing meaningful themes

After coding all the data, each coder should independently reflect on the team’s summary memos (step 1), the codebook (step 2), and the coded data itself to develop draft themes (step 3). It can be illuminating for coders to review all excerpts associated with each code, so that they derive themes directly from the data. Researchers should remain focused on the research question during this step, so that themes have a clear relation with the overall project aim. Use of qualitative analysis software will make it easy to view each segment of data tagged with each code. Themes might neatly correspond to groups of codes. Or—more likely—they will unite codes and data in unexpected ways. A whiteboard or presentation slides might be helpful to organise, craft, and revise themes. We also provide a template for coproducing themes (supplemental material 3). As with codebook justification, team members will ideally produce individual drafts of the themes that they have identified in the data. They can then discuss these with the group and reach alignment or consensus on the final themes.

The team should ensure that all themes are salient, meaning that they are: supported by the data, relevant to the study objectives, and important. Similar to codes, themes are framed as complete thoughts or sentences, not categories. While codes and themes might appear to be similar to each other, the key distinction is that the themes represent a broader concept. Table 2 shows examples of codes and their corresponding themes from a previously published project that used practical thematic analysis. 36 Identifying three to four key themes that comprise a broader overarching theme is a useful approach. Themes can also have subthemes, if appropriate. 40 41 42 43 44

Example codes with themes in practical thematic analysis 36

Thematic analysis session

After each coder has independently produced draft themes, a carefully selected subset of the manuscript team meets for a thematic analysis session ( table 3 ). The purpose of this session is to discuss and reach alignment or consensus on the final themes. We recommend a session of three to five hours, either in-person or virtually.

Example agenda of thematic analysis session

The composition of the thematic analysis session team is important, as each person’s perspectives will shape the results. This group is usually a small subset of the broader research team, with three to seven individuals. We recommend that primary and senior authors work together to include people with diverse experiences related to the research topic. They should aim for a range of personalities and professional identities, particularly those of clinicians, trainees, patients, and care partners. At a minimum, all coders and primary and senior authors should participate in the thematic analysis session.

The session begins with each coder presenting their draft themes with supporting quotes from the data. 5 Through respectful and collaborative deliberation, the group will develop a shared set of final themes.

One team member facilitates the session. A firm, confident, and consistent facilitation style with good listening skills is critical. For practical reasons, this person is not usually one of the primary coders. Hierarchies in teams cannot be entirely flattened, but acknowledging them and appointing an external facilitator can reduce their impact. The facilitator can ensure that all voices are heard. For example, they might ask for perspectives from patient partners or more junior researchers, and follow up on comments from senior researchers to say, “We have heard your perspective and it is important; we want to make sure all perspectives in the room are equally considered.” Or, “I hear [senior person] is offering [x] idea, I’d like to hear other perspectives in the room.” The role of the facilitator is critical in the thematic analysis session. The facilitator might also privately discuss with more senior researchers, such as principal investigators and senior authors, the importance of being aware of their influence over others and respecting and eliciting the perspectives of more junior researchers, such as patients, care partners, and students.

To our knowledge, this discrete thematic analysis session is a novel contribution of practical thematic analysis. It helps efficiently incorporate diverse perspectives using the session agenda and theme coproduction template (supplemental material 3) and makes the process of constructing themes transparent to the entire research team.

Writing the report

We recommend beginning the results narrative with a summary of all relevant themes emerging from the analysis, followed by a subheading for each theme. Each subsection begins with a brief description of the theme and is illustrated with relevant quotes, which are contextualised and explained. The write-up should not simply be a list, but should contain meaningful analysis and insight from the researchers, including descriptions of how different stakeholders might have experienced a particular situation differently or unexpectedly.

In addition to weaving quotes into the results narrative, quotes can be presented in a table. This strategy is a particularly helpful when submitting to clinical journals with tight word count limitations. Quote tables might also be effective in illustrating areas of agreement and disagreement across stakeholder groups, with columns representing different groups and rows representing each theme or subtheme. Quotes should include an anonymous label for each participant and any relevant characteristics, such as role or gender. The aim is to produce rich descriptions. 5 We recommend against repeating quotations across multiple themes in the report, so as to avoid confusion. The template for coproducing themes (supplemental material 3) allows documentation of quotes supporting each theme, which might also be useful during report writing.

Visual illustrations such as a thematic map or figure of the findings can help communicate themes efficiently. 4 36 42 44 If a figure is not possible, a simple list can suffice. 36 Both must clearly present the main themes with subthemes. Thematic figures can facilitate confirmation that the researchers’ interpretations reflect the study populations’ perspectives (sometimes known as member checking), because authors can invite discussions about the figure and descriptions of findings and supporting quotes. 46 This process can enhance the validity of the results. 46

In supplemental material 4, we provide additional guidance on reporting thematic analysis consistent with COREQ. 18 Commonly used in health services research, COREQ outlines a standardised list of items to be included in qualitative research reports ( box 7 ).

Reporting in context

We note that use of COREQ or any other reporting guidelines does not in itself produce high quality work and should not be used as a substitute for general methodological rigor. Rather, researchers must consider rigor throughout the entire research process. As the issue of how to conceptualise and achieve rigorous qualitative research continues to be debated, 47 48 we encourage researchers to explicitly discuss how they have looked at methodological rigor in their reports. Specifically, we point researchers to Braun and Clarke’s 2021 tool for evaluating thematic analysis manuscripts for publication (“Twenty questions to guide assessment of TA [thematic analysis] research quality”). 16

Avoiding common pitfalls

Awareness of common mistakes can help researchers avoid improper use of qualitative methods. Improper use can, for example, prevent researchers from developing meaningful themes and can risk drawing inappropriate conclusions from the data. Braun and Clarke also warn of poor quality in qualitative research, noting that “coherence and integrity of published research does not always hold.” 16

Weak themes

An important distinction between high and low quality themes is that high quality themes are descriptive and complete thoughts. As such, they often contain subjects and verbs, and can be expressed as full sentences ( table 2 ). Themes that are simply descriptive categories or topics could fail to impart meaningful knowledge beyond categorisation. 16 49 50

Researchers will often move from coding directly to writing up themes, without performing the work of theming or hosting a thematic analysis session. Skipping concerted theming often results in themes that look more like categories than unifying threads across the data.

Unfocused analysis

Because data collection for qualitative research is often semi-structured (eg, interviews, focus groups), not all data will be directly relevant to the research question at hand. To avoid unfocused analysis and a correspondingly unfocused manuscript, we recommend that all team members keep the research objective in front of them at every stage, from reading to coding to theming. During the thematic analysis session, we recommend that the research question be written on a whiteboard so that all team members can refer back to it, and so that the facilitator can ensure that conversations about themes occur in the context of this question. Consistently focusing on the research question can help to ensure that the final report directly answers it, as opposed to the many other interesting insights that might emerge during the qualitative research process. Such insights can be picked up in a secondary analysis if desired.

Inappropriate quantification

Presenting findings quantitatively (eg, “We found 18 instances of participants mentioning safety concerns about the vaccines”) is generally undesirable in practical thematic analysis reporting. 51 Descriptive terms are more appropriate (eg, “participants had substantial concerns about the vaccines,” or “several participants were concerned about this”). This descriptive presentation is critical because qualitative data might not be consistently elicited across participants, meaning that some individuals might share certain information while others do not, simply based on how conversations evolve. Additionally, qualitative research does not aim to draw inferences outside its specific sample. Emphasising numbers in thematic analysis can lead to readers incorrectly generalising the findings. Although peer reviewers unfamiliar with thematic analysis often request this type of quantification, practitioners of practical thematic analysis can confidently defend their decision to avoid it. If quantification is methodologically important, we recommend simultaneously conducting a survey or incorporating standardised interview techniques into the interview guide. 11

Neglecting group dynamics

Researchers should concertedly consider group dynamics in the research team. Particular attention should be paid to power relations and the personality of team members, which can include aspects such as who most often speaks, who defines concepts, and who resolves disagreements that might arise within the group. 52

The perspectives of patient and care partners are particularly important to cultivate. Ideally, patient partners are meaningfully embedded in studies from start to finish, not just for practical thematic analysis. 53 Meaningful engagement can build trust, which makes it easier for patient partners to ask questions, request clarification, and share their perspectives. Professional team members should actively encourage patient partners by emphasising that their expertise is critically important and valued. Noting when a patient partner might be best positioned to offer their perspective can be particularly powerful.

Insufficient time allocation

Researchers must allocate enough time to complete thematic analysis. Working with qualitative data takes time, especially because it is often not a linear process. As the strength of thematic analysis lies in its ability to make use of the rich details and complexities of the data, we recommend careful planning for the time required to read and code each document.

Estimating the necessary time can be challenging. For step 1 (reading), researchers can roughly calculate the time required based on the time needed to read and reflect on one piece of data. For step 2 (coding), the total amount of time needed can be extrapolated from the time needed to code one document during codebook development. We also recommend three to five hours for the thematic analysis session itself, although coders will need to independently develop their draft themes beforehand. Although the time required for practical thematic analysis is variable, teams should be able to estimate their own required effort with these guidelines.

Practical thematic analysis builds on the foundational work of Braun and Clarke. 4 16 We have reframed their six phase process into three condensed steps of reading, coding, and theming. While we have maintained important elements of Braun and Clarke’s reflexive thematic analysis, we believe that practical thematic analysis is conceptually simpler and easier to teach to less experienced researchers and non-researcher stakeholders. For teams with different levels of familiarity with qualitative methods, this approach presents a clear roadmap to the reading, coding, and theming of qualitative data. Our practical thematic analysis approach promotes efficient learning by doing—experiential learning. 12 29 Practical thematic analysis avoids the risk of relying on complex descriptions of methods and theory and places more emphasis on obtaining meaningful insights from those close to real world clinical environments. Although practical thematic analysis can be used to perform intensive theory based analyses, it lends itself more readily to accelerated, pragmatic approaches.

Strengths and limitations

Our approach is designed to smooth the qualitative analysis process and yield high quality themes. Yet, researchers should note that poorly performed analyses will still produce low quality results. Practical thematic analysis is a qualitative analytical approach; it does not look at study design, data collection, or other important elements of qualitative research. It also might not be the right choice for every qualitative research project. We recommend it for applied health services research questions, where diverse perspectives and simplicity might be valuable.

We also urge researchers to improve internal validity through triangulation methods, such as member checking (supplemental material 1). 46 Member checking could include soliciting input on high level themes, theme definitions, and quotations from participants. This approach might increase rigor.

Implications

We hope that by providing clear and simple instructions for practical thematic analysis, a broader range of researchers will be more inclined to use these methods. Increased transparency and familiarity with qualitative approaches can enhance researchers’ ability to both interpret qualitative studies and offer up new findings themselves. In addition, it can have usefulness in training and reporting. A major strength of this approach is to facilitate meaningful inclusion of patient and care partner perspectives, because their lived experiences can be particularly valuable in data interpretation and the resulting findings. 11 30 As clinicians are especially pressed for time, they might also appreciate a practical set of instructions that can be immediately used to leverage their insights and access to patients and clinical settings, and increase the impact of qualitative research through timely results. 8

Practical thematic analysis is a simplified approach to performing thematic analysis in health services research, a field where the experiences of patients, care partners, and clinicians are of inherent interest. We hope that it will be accessible to those individuals new to qualitative methods, including patients, care partners, clinicians, and other health services researchers. We intend to empower multidisciplinary research teams to explore unanswered questions and make new, important, and rigorous contributions to our understanding of important clinical and health systems research.

Acknowledgments

All members of the Coproduction Laboratory provided input that shaped this manuscript during laboratory meetings. We acknowledge advice from Elizabeth Carpenter-Song, an expert in qualitative methods.

Coproduction Laboratory group contributors: Stephanie C Acquilano ( http://orcid.org/0000-0002-1215-5531 ), Julie Doherty ( http://orcid.org/0000-0002-5279-6536 ), Rachel C Forcino ( http://orcid.org/0000-0001-9938-4830 ), Tina Foster ( http://orcid.org/0000-0001-6239-4031 ), Megan Holthoff, Christopher R Jacobs ( http://orcid.org/0000-0001-5324-8657 ), Lisa C Johnson ( http://orcid.org/0000-0001-7448-4931 ), Elaine T Kiriakopoulos, Kathryn Kirkland ( http://orcid.org/0000-0002-9851-926X ), Meredith A MacMartin ( http://orcid.org/0000-0002-6614-6091 ), Emily A Morgan, Eugene Nelson, Elizabeth O’Donnell, Brant Oliver ( http://orcid.org/0000-0002-7399-622X ), Danielle Schubbe ( http://orcid.org/0000-0002-9858-1805 ), Gabrielle Stevens ( http://orcid.org/0000-0001-9001-178X ), Rachael P Thomeer ( http://orcid.org/0000-0002-5974-3840 ).

Contributors: Practical thematic analysis, an approach designed for multidisciplinary health services teams new to qualitative research, was based on CHS’s experiences teaching thematic analysis to clinical teams and students. We have drawn heavily from qualitative methods literature. CHS is the guarantor of the article. CHS, AS, CvP, AMK, JRK, and JAP contributed to drafting the manuscript. AS, JG, CMM, JAP, and RWY provided feedback on their experiences using practical thematic analysis. CvP, LCL, SLB, AVC, GE, and JKL advised on qualitative methods in health services research, given extensive experience. All authors meaningfully edited the manuscript content, including AVC and RKS. The corresponding author attests that all listed authors meet authorship criteria and that no others meeting the criteria have been omitted.

Funding: This manuscript did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

Competing interests: All authors have completed the ICMJE uniform disclosure form at https://www.icmje.org/disclosure-of-interest/ and declare: no support from any organisation for the submitted work; no financial relationships with any organisations that might have an interest in the submitted work in the previous three years; no other relationships or activities that could appear to have influenced the submitted work.

Provenance and peer review: Not commissioned; externally peer reviewed.

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Qualitative Research Methods in Health Services Research

First Online: 30 August 2023

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Charlotte Ullrich 3 &
Regina Poß-Doering 3

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Qualitative research offers a unique contribution to health research by providing the opportunity to gain detailed insight into real-life situations, people’s experiences, perceptions, beliefs, behaviours and contextual factors. It can be conducted as a stand-alone study or as part of larger studies. Frequently used qualitative data collection methods include interviews, focus groups and observation. While there is a range of qualitative data analysis methods available, most overlap in combining inductive and deductive approaches. Typical challenges of qualitative research concern the sample size, saturation, interview guide, reach, maintaining anonymity and choice of analytical strategy. Strategies to address these issues are described in this chapter.

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Ullrich, C., Poß-Doering, R. (2023). Qualitative Research Methods in Health Services Research. In: Wensing, M., Ullrich, C. (eds) Foundations of Health Services Research. Springer, Cham. https://doi.org/10.1007/978-3-031-29998-8_7

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Collecting and Analyzing Qualitative Data

Brent Wolff, Frank Mahoney, Anna Leena Lohiniva, and Melissa Corkum

Choosing When to Apply Qualitative Methods
Commonly Used Qualitative Methods in Field Investigations
Sampling and Recruitment for Qualitative Research
Managing, Condensing, Displaying, and Interpreting Qualitative Data
Coding and Analysis Requirements

Qualitative research methods are a key component of field epidemiologic investigations because they can provide insight into the perceptions, values, opinions, and community norms where investigations are being conducted ( 1,2 ). Open-ended inquiry methods, the mainstay of qualitative interview techniques, are essential in formative research for exploring contextual factors and rationales for risk behaviors that do not fit neatly into predefined categories. For example, during the 2014–2015 Ebola virus disease outbreaks in parts of West Africa, understanding the cultural implications of burial practices within different communities was crucial to designing and monitoring interventions for safe burials ( Box 10.1 ). In program evaluations, qualitative methods can assist the investigator in diagnosing what went right or wrong as part of a process evaluation or in troubleshooting why a program might not be working as well as expected. When designing an intervention, qualitative methods can be useful in exploring dimensions of acceptability to increase the chances of intervention acceptance and success. When performed in conjunction with quantitative studies, qualitative methods can help the investigator confirm, challenge, or deepen the validity of conclusions than either component might have yielded alone ( 1,2 ).

Qualitative research was used extensively in response to the Ebola virus disease outbreaks in parts of West Africa to understand burial practices and to design culturally appropriate strategies to ensure safe burials. Qualitative studies were also used to monitor key aspects of the response.

In October 2014, Liberia experienced an abrupt and steady decrease in case counts and deaths in contrast with predicted disease models of an increased case count. At the time, communities were resistant to entering Ebola treatment centers, raising the possibility that patients were not being referred for care and communities might be conducting occult burials.

To assess what was happening at the community level, the Liberian Emergency Operations Center recruited epidemiologists from the US Department of Health and Human Services/Centers for Disease Control and Prevention and the African Union to investigate the problem.

Teams conducted in-depth interviews and focus group discussions with community leaders, local funeral directors, and coffin makers and learned that communities were not conducting occult burials and that the overall number of burials was less than what they had experienced in previous years. Other key findings included the willingness of funeral directors to cooperate with disease response efforts, the need for training of funeral home workers, and considerable community resistance to cremation practices. These findings prompted the Emergency Operations Center to open a burial ground for Ebola decedents, support enhanced testing of burials in the private sector, and train private-sector funeral workers regarding safe burial practices.

Source: Melissa Corkum, personal communication.

Similar to quantitative approaches, qualitative research seeks answers to specific questions by using rigorous approaches to collecting and compiling information and producing findings that can be applicable beyond the study population. The fundamental difference in approaches lies in how they translate real-life complexities of initial observations into units of analysis. Data collected in qualitative studies typically are in the form of text or visual images, which provide rich sources of insight but also tend to be bulky and time-consuming to code and analyze. Practically speaking, qualitative study designs tend to favor small, purposively selected samples ideal for case studies or in-depth analysis ( 1 ). The combination of purposive sampling and open-ended question formats deprive qualitative study designs of the power to quantify and generalize conclusions, one of the key limitations of this approach.

Qualitative scientists might argue, however, that the generalizability and precision possible through probabilistic sampling and categorical outcomes are achieved at the cost of enhanced validity, nuance, and naturalism that less structured approaches offer ( 3 ). Open-ended techniques are particularly useful for understanding subjective meanings and motivations underlying behavior. They enable investigators to be equally adept at exploring factors observed and unobserved, intentions as well as actions, internal meanings as well as external consequences, options considered but not taken, and unmeasurable as well as measurable outcomes. These methods are important when the source of or solution to a public health problem is rooted in local perceptions rather than objectively measurable characteristics selected by outside observers ( 3 ). Ultimately, such approaches have the ability to go beyond quantifying questions of how much or how many to take on questions of how or why from the perspective and in the words of the study subjects themselves ( 1,2 ).

Another key advantage of qualitative methods for field investigations is their flexibility ( 4 ). Qualitative designs not only enable but also encourage flexibility in the content and flow of questions to challenge and probe for deeper meanings or follow new leads if they lead to deeper understanding of an issue (5). It is not uncommon for topic guides to be adjusted in the course of fieldwork to investigate emerging themes relevant to answering the original study question. As discussed herein, qualitative study designs allow flexibility in sample size to accommodate the need for more or fewer interviews among particular groups to determine the root cause of an issue (see the section on Sampling and Recruitment in Qualitative Research). In the context of field investigations, such methods can be extremely useful for investigating complex or fast-moving situations where the dimensions of analysis cannot be fully anticipated.

Ultimately, the decision whether to include qualitative research in a particular field investigation depends mainly on the nature of the research question itself. Certain types of research topics lend themselves more naturally to qualitative rather than other approaches ( Table 10.1 ). These include exploratory investigations when not enough is known about a problem to formulate a hypothesis or develop a fixed set of questions and answer codes. They include research questions where intentions matter as much as actions and “why?” or “why not?” questions matter as much as precise estimation of measured outcomes. Qualitative approaches also work well when contextual influences, subjective meanings, stigma, or strong social desirability biases lower faith in the validity of responses coming from a relatively impersonal survey questionnaire interview.

The availability of personnel with training and experience in qualitative interviewing or observation is critical for obtaining the best quality data but is not absolutely required for rapid assessment in field settings. Qualitative interviewing requires a broader set of skills than survey interviewing. It is not enough to follow a topic guide like a questionnaire, in order, from top to bottom. A qualitative interviewer must exercise judgment to decide when to probe and when to move on, when to encourage, challenge, or follow relevant leads even if they are not written in the topic guide. Ability to engage with informants, connect ideas during the interview, and think on one’s feet are common characteristics of good qualitative interviewers. By far the most important qualification in conducting qualitative fieldwork is a firm grasp of the research objectives; with this qualification, a member of the research team armed with curiosity and a topic guide can learn on the job with successful results.

Semi-Structured Interviews

Semi-structured interviews can be conducted with single participants (in-depth or individual key informants) or with groups (focus group discussions [FGDs] or key informant groups). These interviews follow a suggested topic guide rather than a fixed questionnaire format. Topic guides typically consist of a limited number ( 10– 15 ) of broad, open-ended questions followed by bulleted points to facilitate optional probing. The conversational back-and-forth nature of a semi-structured format puts the researcher and researched (the interview participants) on more equal footing than allowed by more structured formats. Respondents, the term used in the case of quantitative questionnaire interviews, become informants in the case of individual semi-structured in-depth interviews (IDIs) or participants in the case of FGDs. Freedom to probe beyond initial responses enables interviewers to actively engage with the interviewee to seek clarity, openness, and depth by challenging informants to reach below layers of self-presentation and social desirability. In this respect, interviewing is sometimes compared with peeling an onion, with the first version of events accessible to the public, including survey interviewers, and deeper inner layers accessible to those who invest the time and effort to build rapport and gain trust. (The theory of the active interview suggests that all interviews involve staged social encounters where the interviewee is constantly assessing interviewer intentions and adjusting his or her responses accordingly [ 1 ]. Consequently good rapport is important for any type of interview. Survey formats give interviewers less freedom to divert from the preset script of questions and formal probes.)

Individual In-Depth Interviews and Key-Informant Interviews

The most common forms of individual semi-structured interviews are IDIs and key informant interviews (KIIs). IDIs are conducted among informants typically selected for first-hand experience (e.g., service users, participants, survivors) relevant to the research topic. These are typically conducted as one-on-one face-to-face interviews (two-on-one if translators are needed) to maximize rapport-building and confidentiality. KIIs are similar to IDIs but focus on individual persons with special knowledge or influence (e.g., community leaders or health authorities) that give them broader perspective or deeper insight into the topic area ( Box 10.2 ). Whereas IDIs tend to focus on personal experiences, context, meaning, and implications for informants, KIIs tend to steer away from personal questions in favor of expert insights or community perspectives. IDIs enable flexible sampling strategies and represent the interviewing reference standard for confidentiality, rapport, richness, and contextual detail. However, IDIs are time-and labor-intensive to collect and analyze. Because confidentiality is not a concern in KIIs, these interviews might be conducted as individual or group interviews, as required for the topic area.

Focus Group Discussions and Group Key Informant Interviews

FGDs are semi-structured group interviews in which six to eight participants, homogeneous with respect to a shared experience, behavior, or demographic characteristic, are guided through a topic guide by a trained moderator ( 6 ). (Advice on ideal group interview size varies. The principle is to convene a group large enough to foster an open, lively discussion of the topic, and small enough to ensure all participants stay fully engaged in the process.) Over the course of discussion, the moderator is expected to pose questions, foster group participation, and probe for clarity and depth. Long a staple of market research, focus groups have become a widely used social science technique with broad applications in public health, and they are especially popular as a rapid method for assessing community norms and shared perceptions.

Focus groups have certain useful advantages during field investigations. They are highly adaptable, inexpensive to arrange and conduct, and often enjoyable for participants. Group dynamics effectively tap into collective knowledge and experience to serve as a proxy informant for the community as a whole. They are also capable of recreating a microcosm of social norms where social, moral, and emotional dimensions of topics are allowed to emerge. Skilled moderators can also exploit the tendency of small groups to seek consensus to bring out disagreements that the participants will work to resolve in a way that can lead to deeper understanding. There are also limitations on focus group methods. Lack of confidentiality during group interviews means they should not be used to explore personal experiences of a sensitive nature on ethical grounds. Participants may take it on themselves to volunteer such information, but moderators are generally encouraged to steer the conversation back to general observations to avoid putting pressure on other participants to disclose in a similar way. Similarly, FGDs are subject by design to strong social desirability biases. Qualitative study designs using focus groups sometimes add individual interviews precisely to enable participants to describe personal experiences or personal views that would be difficult or inappropriate to share in a group setting. Focus groups run the risk of producing broad but shallow analyses of issues if groups reach comfortable but superficial consensus around complex topics. This weakness can be countered by training moderators to probe effectively and challenge any consensus that sounds too simplistic or contradictory with prior knowledge. However, FGDs are surprisingly robust against the influence of strongly opinionated participants, highly adaptable, and well suited to application in study designs where systematic comparisons across different groups are called for.

Like FGDs, group KIIs rely on positive chemistry and the stimulating effects of group discussion but aim to gather expert knowledge or oversight on a particular topic rather than lived experience of embedded social actors. Group KIIs have no minimum size requirements and can involve as few as two or three participants.

Egypt’s National Infection Prevention and Control (IPC) program undertook qualitative research to gain an understanding of the contextual behaviors and motivations of healthcare workers in complying with IPC guidelines. The study was undertaken to guide the development of effective behavior change interventions in healthcare settings to improve IPC compliance.

Key informant interviews and focus group discussions were conducted in two governorates among cleaning staff, nursing staff, and physicians in different types of healthcare facilities. The findings highlighted social and cultural barriers to IPC compliance, enabling the IPC program to design responses. For example,

Informants expressed difficulty in complying with IPC measures that forced them to act outside their normal roles in an ingrained hospital culture. Response: Role models and champions were introduced to help catalyze change.
Informants described fatalistic attitudes that undermined energy and interest in modifying behavior. Response: Accordingly, interventions affirming institutional commitment to change while challenging fatalistic assumptions were developed.
Informants did not perceive IPC as effective. Response: Trainings were amended to include scientific evidence justifying IPC practices.
Informants perceived hygiene as something they took pride in and were judged on. Response: Public recognition of optimal IPC practice was introduced to tap into positive social desirability and professional pride in maintaining hygiene in the work environment.

Qualitative research identified sources of resistance to quality clinical practice in Egypt’s healthcare settings and culturally appropriate responses to overcome that resistance.

____________________ Source: Anna Leena Lohiniva, personal communication.

Visualization Methods

Visualization methods have been developed as a way to enhance participation and empower interviewees relative to researchers during group data collection ( 7 ). Visualization methods involve asking participants to engage in collective problem- solving of challenges expressed through group production of maps, diagrams, or other images. For example, participants from the community might be asked to sketch a map of their community and to highlight features of relevance to the research topic (e.g., access to health facilities or sites of risk concentrations). Body diagramming is another visualization tool in which community members are asked to depict how and where a health threat affects the human body as a way of understanding folk conceptions of health, disease, treatment, and prevention. Ensuing debate and dialogue regarding construction of images can be recorded and analyzed in conjunction with the visual image itself. Visualization exercises were initially designed to accommodate groups the size of entire communities, but they can work equally well with smaller groups corresponding to the size of FGDs or group KIIs.

Selecting a Sample of Study Participants

Fundamental differences between qualitative and quantitative approaches to research emerge most clearly in the practice of sampling and recruitment of study participants. Qualitative samples are typically small and purposive. In-depth interview informants are usually selected on the basis of unique characteristics or personal experiences that make them exemplary for the study, if not typical in other respects. Key informants are selected for their unique knowledge or influence in the study domain. Focus group mobilization often seeks participants who are typical with respect to others in the community having similar exposure or shared characteristics. Often, however, participants in qualitative studies are selected because they are exceptional rather than simply representative. Their value lies not in their generalizability but in their ability to generate insight into the key questions driving the study.

Determining Sample Size

Sample size determination for qualitative studies also follows a different logic than that used for probability sample surveys. For example, whereas some qualitative methods specify ideal ranges of participants that constitute a valid observation (e.g., focus groups), there are no rules on how many observations it takes to attain valid results. In theory, sample size in qualitative designs should be determined by the saturation principle , where interviews are conducted until additional interviews yield no additional insights into the topic of research ( 8 ). Practically speaking, designing a study with a range in number of interviews is advisable for providing a level of flexibility if additional interviews are needed to reach clear conclusions.

Recruiting Study Participants

Recruitment strategies for qualitative studies typically involve some degree of participant self-selection (e.g., advertising in public spaces for interested participants) and purposive selection (e.g., identification of key informants). Purposive selection in community settings often requires authorization from local authorities and assistance from local mobilizers before the informed consent process can begin. Clearly specifying eligibility criteria is crucial for minimizing the tendency of study mobilizers to apply their own filters regarding who reflects the community in the best light. In addition to formal eligibility criteria, character traits (e.g., articulate and interested in participating) and convenience (e.g., not too far away) are legitimate considerations for whom to include in the sample. Accommodations to personality and convenience help to ensure the small number of interviews in a typical qualitative design yields maximum value for minimum investment. This is one reason why random sampling of qualitative informants is not only unnecessary but also potentially counterproductive.

Analysis of qualitative data can be divided into four stages: data management, data condensation, data display, and drawing and verifying conclusions ( 9 ).

Managing Qualitative Data

From the outset, developing a clear organization system for qualitative data is important. Ideally, naming conventions for original data files and subsequent analysis should be recorded in a data dictionary file that includes dates, locations, defining individual or group characteristics, interviewer characteristics, and other defining features. Digital recordings of interviews or visualization products should be reviewed to ensure fidelity of analyzed data to original observations. If ethics agreements require that no names or identifying characteristics be recorded, all individual names must be removed from final transcriptions before analysis begins. If data are analyzed by using textual data analysis software, maintaining careful version control over the data files is crucial, especially when multiple coders are involved.

Condensing Qualitative Data

Condensing refers to the process of selecting, focusing, simplifying, and abstracting the data available at the time of the original observation, then transforming the condensed data into a data set that can be analyzed. In qualitative research, most of the time investment required to complete a study comes after the fieldwork is complete. A single hour of taped individual interview can take a full day to transcribe and additional time to translate if necessary. Group interviews can take even longer because of the difficulty of transcribing active group input. Each stage of data condensation involves multiple decisions that require clear rules and close supervision. A typical challenge is finding the right balance between fidelity to the rhythm and texture of original language and clarity of the translated version in the language of analysis. For example, discussions among groups with little or no education should not emerge after the transcription (and translation) process sounding like university graduates. Judgment must be exercised about which terms should be translated and which terms should be kept in vernacular because there is no appropriate term in English to capture the richness of its meaning.

Displaying Qualitative Data

After the initial condensation, qualitative analysis depends on how the data are displayed. Decisions regarding how data are summarized and laid out to facilitate comparison influence the depth and detail of the investigation’s conclusions. Displays might range from full verbatim transcripts of interviews to bulleted summaries or distilled summaries of interview notes. In a field setting, a useful and commonly used display format is an overview chart in which key themes or research questions are listed in rows in a word processer table or in a spreadsheet and individual informant or group entry characteristics are listed across columns. Overview charts are useful because they allow easy, systematic comparison of results.

Drawing and Verifying Conclusions

Analyzing qualitative data is an iterative and ideally interactive process that leads to rigorous and systematic interpretation of textual or visual data. At least four common steps are involved:

Reading and rereading. The core of qualitative analysis is careful, systematic, and repeated reading of text to identify consistent themes and interconnections emerging from the data. The act of repeated reading inevitably yields new themes, connections, and deeper meanings from the first reading. Reading the full text of interviews multiple times before subdividing according to coded themes is key to appreciating the full context and flow of each interview before subdividing and extracting coded sections of text for separate analysis.
Coding. A common technique in qualitative analysis involves developing codes for labeling sections of text for selective retrieval in later stages of analysis and verification. Different approaches can be used for textual coding. One approach, structural coding , follows the structure of the interview guide. Another approach, thematic coding , labels common themes that appear across interviews, whether by design of the topic guide or emerging themes assigned based on further analysis. To avoid the problem of shift and drift in codes across time or multiple coders, qualitative investigators should develop a standard codebook with written definitions and rules about when codes should start and stop. Coding is also an iterative process in which new codes that emerge from repeated reading are layered on top of existing codes. Development and refinement of the codebook is inseparably part of the analysis.
Analyzing and writing memos. As codes are being developed and refined, answers to the original research question should begin to emerge. Coding can facilitate that process through selective text retrieval during which similarities within and between coding categories can be extracted and compared systematically. Because no p values can be derived in qualitative analyses to mark the transition from tentative to firm conclusions, standard practice is to write memos to record evolving insights and emerging patterns in the data and how they relate to the original research questions. Writing memos is intended to catalyze further thinking about the data, thus initiating new connections that can lead to further coding and deeper understanding.
Verifying conclusions. Analysis rigor depends as much on the thoroughness of the cross-examination and attempt to find alternative conclusions as on the quality of original conclusions. Cross-examining conclusions can occur in different ways. One way is encouraging regular interaction between analysts to challenge conclusions and pose alternative explanations for the same data. Another way is quizzing the data (i.e., retrieving coded segments by using Boolean logic to systematically compare code contents where they overlap with other codes or informant characteristics). If alternative explanations for initial conclusions are more difficult to justify, confidence in those conclusions is strengthened.

Above all, qualitative data analysis requires sufficient time and immersion in the data. Computer textual software programs can facilitate selective text retrieval and quizzing the data, but discerning patterns and arriving at conclusions can be done only by the analysts. This requirement involves intensive reading and rereading, developing codebooks and coding, discussing and debating, revising codebooks, and recoding as needed until clear patterns emerge from the data. Although quality and depth of analysis is usually proportional to the time invested, a number of techniques, including some mentioned earlier, can be used to expedite analysis under field conditions.

Detailed notes instead of full transcriptions. Assigning one or two note-takers to an interview can be considered where the time needed for full transcription and translation is not feasible. Even if plans are in place for full transcriptions after fieldwork, asking note-takers to submit organized summary notes is a useful technique for getting real-time feedback on interview content and making adjustments to topic guides or interviewer training as needed.
Summary overview charts for thematic coding. (See discussion under “Displaying Data.”) If there is limited time for full transcription and/or systematic coding of text interviews using textual analysis software in the field, an overview chart is a useful technique for rapid manual coding.
Thematic extract files. This is a slightly expanded version of manual thematic coding that is useful when full transcriptions of interviews are available. With use of a word processing program, files can be sectioned according to themes, or separate files can be created for each theme. Relevant extracts from transcripts or analyst notes can be copied and pasted into files or sections of files corresponding to each theme. This is particularly useful for storing appropriate quotes that can be used to illustrate thematic conclusions in final reports or manuscripts.
Teamwork. Qualitative analysis can be performed by a single analyst, but it is usually beneficial to involve more than one. Qualitative conclusions involve subjective judgment calls. Having more than one coder or analyst working on a project enables more interactive discussion and debate before reaching consensus on conclusions.
Systematic coding.
Selective retrieval of coded segments.
Verifying conclusions (“quizzing the data”).
Working on larger data sets with multiple separate files.
Working in teams with multiple coders to allow intercoder reliability to be measured and monitored.

The most widely used software packages (e.g., NVivo [QSR International Pty. Ltd., Melbourne, VIC, Australia] and ATLAS.ti [Scientific Software Development GmbH, Berlin, Germany]) evolved to include sophisticated analytic features covering a wide array of applications but are relatively expensive in terms of license cost and initial investment in time and training. A promising development is the advent of free or low-cost Web-based services (e.g., Dedoose [Sociocultural Research Consultants LLC, Manhattan Beach, CA]) that have many of the same analytic features on a more affordable subscription basis and that enable local research counterparts to remain engaged through the analysis phase (see Teamwork criteria). The start-up costs of computer-assisted analysis need to be weighed against their analytic benefits, which tend to decline with the volume and complexity of data to be analyzed. For rapid situational analyses or small scale qualitative studies (e.g. fewer than 30 observations as an informal rule of thumb), manual coding and analysis using word processing or spreadsheet programs is faster and sufficient to enable rigorous analysis and verification of conclusions.

Qualitative methods belong to a branch of social science inquiry that emphasizes the importance of context, subjective meanings, and motivations in understanding human behavior patterns. Qualitative approaches definitionally rely on open-ended, semistructured, non-numeric strategies for asking questions and recording responses. Conclusions are drawn from systematic visual or textual analysis involving repeated reading, coding, and organizing information into structured and emerging themes. Because textual analysis is relatively time-and skill-intensive, qualitative samples tend to be small and purposively selected to yield the maximum amount of information from the minimum amount of data collection. Although qualitative approaches cannot provide representative or generalizable findings in a statistical sense, they can offer an unparalleled level of detail, nuance, and naturalistic insight into the chosen subject of study. Qualitative methods enable investigators to “hear the voice” of the researched in a way that questionnaire methods, even with the occasional open-ended response option, cannot.

Whether or when to use qualitative methods in field epidemiology studies ultimately depends on the nature of the public health question to be answered. Qualitative approaches make sense when a study question about behavior patterns or program performance leads with why, why not , or how . Similarly, they are appropriate when the answer to the study question depends on understanding the problem from the perspective of social actors in real-life settings or when the object of study cannot be adequately captured, quantified, or categorized through a battery of closed-ended survey questions (e.g., stigma or the foundation of health beliefs). Another justification for qualitative methods occurs when the topic is especially sensitive or subject to strong social desirability biases that require developing trust with the informant and persistent probing to reach the truth. Finally, qualitative methods make sense when the study question is exploratory in nature, where this approach enables the investigator the freedom and flexibility to adjust topic guides and probe beyond the original topic guides.

Given that the conditions just described probably apply more often than not in everyday field epidemiology, it might be surprising that such approaches are not incorporated more routinely into standard epidemiologic training. Part of the answer might have to do with the subjective element in qualitative sampling and analysis that seems at odds with core scientific values of objectivity. Part of it might have to do with the skill requirements for good qualitative interviewing, which are generally more difficult to find than those required for routine survey interviewing.

For the field epidemiologist unfamiliar with qualitative study design, it is important to emphasize that obtaining important insights from applying basic approaches is possible, even without a seasoned team of qualitative researchers on hand to do the work. The flexibility of qualitative methods also tends to make them forgiving with practice and persistence. Beyond the required study approvals and ethical clearances, the basic essential requirements for collecting qualitative data in field settings start with an interviewer having a strong command of the research question, basic interactive and language skills, and a healthy sense of curiosity, armed with a simple open-ended topic guide and a tape recorder or note-taker to capture the key points of the discussion. Readily available manuals on qualitative study design, methods, and analysis can provide additional guidance to improve the quality of data collection and analysis.

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v.42(4); 2007 Aug

Qualitative Data Analysis for Health Services Research: Developing Taxonomy, Themes, and Theory

To provide practical strategies for conducting and evaluating analyses of qualitative data applicable for health services researchers.

Data Sources and Design

We draw on extant qualitative methodological literature to describe practical approaches to qualitative data analysis. Approaches to data analysis vary by discipline and analytic tradition; however, we focus on qualitative data analysis that has as a goal the generation of taxonomy, themes, and theory germane to health services research.

Principle Findings

We describe an approach to qualitative data analysis that applies the principles of inductive reasoning while also employing predetermined code types to guide data analysis and interpretation. These code types (conceptual, relationship, perspective, participant characteristics, and setting codes) define a structure that is appropriate for generation of taxonomy, themes, and theory. Conceptual codes and subcodes facilitate the development of taxonomies. Relationship and perspective codes facilitate the development of themes and theory. Intersectional analyses with data coded for participant characteristics and setting codes can facilitate comparative analyses.

Conclusions

Qualitative inquiry can improve the description and explanation of complex, real-world phenomena pertinent to health services research. Greater understanding of the processes of qualitative data analysis can be helpful for health services researchers as they use these methods themselves or collaborate with qualitative researchers from a wide range of disciplines.

Qualitative research is increasingly common in health services research ( Shortell 1999 ; Sofaer 1999 ). Qualitative studies have been used, for example, to study culture change ( Marshall et al. 2003 ; Craigie and Hobbs 2004 ), physician–patient relationships and primary care ( Flocke, Miller, and Crabtree 2002 ; Gallagher et al. 2003 ; Sobo, Seid, and Reyes Gelhard 2006 ), diffusion of innovations and quality improvement strategies ( Bradley et al. 2005 ; Crosson et al. 2005 ), novel interventions to improve care ( Koops and Lindley 2002 ; Stapleton, Kirkham, and Thomas 2002 ; Dy et al. 2005 ), and managed care market trends ( Scanlon et al. 2001 ; Devers et al. 2003 ). Despite substantial methodological papers and seminal texts ( Glaser and Strauss 1967 ; Miles and Huberman 1994 ; Mays and Pope 1995 ; Strauss and Corbin 1998 ; Crabtree and Miller 1999 ; Devers 1999 ; Patton 1999 ; Devers and Frankel 2000 ; Giacomini and Cook 2000 ; Morse and Richards 2002 ) about designing qualitative projects and collecting qualitative data, less attention has been paid to the data analysis aspects of qualitative research. The purpose of this paper is to offer practical strategies for the analysis of qualitative data that may be generated from in-depth interviewing, focus groups, field observations, primary or secondary qualitative data (e.g., diaries, meeting minutes, annual reports), or a combination of these data collection approaches.

WHY QUALITATIVE RESEARCH?

Qualitative research is well suited for understanding phenomena within their context, uncovering links among concepts and behaviors, and generating and refining theory ( Glaser and Strauss 1967 ; Miles and Huberman 1994 ; Crabtree and Miller 1999 ; Morse 1999 ; Ragin 1999 ; Sofaer 1999 ; Patton 2002 ; Campbell and Gregor 2004 ; Quinn 2005 ). Distinct from qualitative work, quantitative research seeks to count occurrences, establish statistical links among variables, and generalize findings to the population from which the sample was drawn. Although qualitative and quantitative methods have historically been viewed as mutually exclusive, rigid distinctions are increasingly recognized as inappropriate and counterproductive ( Ragin 1999 ; Sofaer 1999 ; Creswell 2003 ; Skocpol 2003 ). Mixed methods approaches ( Creswell 2003 ) may include both methods employed simultaneously or sequentially, as appropriate.

TYPES OF QUALITATIVE ANALYSIS

There is immense diversity in the disciplinary and theoretical orientation, methods, and types of findings generated by qualitative research ( Yardley 2000 ). The many traditions of qualitative research include, but are not limited to, cultural ethnography ( Agar 1996 ; Quinn 2005 ), institutional ethnography ( Campbell and Gregor 2004 ), comparative historical analyses ( Skocpol 2003 ), case studies ( Yin 1994 ), focus groups ( Krueger and Casey 2000 ), in-depth interviews ( Glaser and Strauss 1967 ; McCracken 1988 ; Patton 2002 ; Quinn 2005 ), participant and nonparticipant observations ( Spradley 1980 ), and hybrid approaches that include parts or wholes of multiple study types. Consistent with the pluralism in theoretical traditions, methods, and study designs, many experts ( Feldman 1995 ; Greenhalgh and Taylor 1997 ; Sofaer 1999 ; Yardley 2000 ; Morse and Richards 2002 ) have argued that there cannot and should not be a uniform approach to qualitative methods. Nevertheless, some approaches to qualitative data analysis are useful in health services research. In this paper, we focus on strategies for analysis of qualitative data that are especially applicable in the generation of taxonomy, themes, and theory ( Table 1 ). Taxonomy is a formal system for classifying multifaceted, complex phenomena ( Patton 2002 ) according to a set of common conceptual domains and dimensions. Taxonomies promote increased clarity in defining and hence comparing diverse, complex interventions ( Sofaer 1999 ), which are common in health policy and management. Themes are recurrent unifying concepts or statements ( Boyatzis 1998 ) about the subject of inquiry. Themes are fundamental concepts ( Ryan and Bernard 2003 ) that characterize specific experiences of individual participants by the more general insights that are apparent from the whole of the data. Theory is a set of general, modifiable propositions that help explain, predict, and interpret events or phenomena of interest ( Dubin 1969 ; Patton 2002 ). Theory is important for understanding potential causal links and confounding variables, for understanding the context within which a phenomenon occurs, and for providing a potential framework for guiding subsequent empirical research.

Selected Types of Results from Qualitative Data Analysis

CONDUCTING THE ANALYSIS

There is no singularly appropriate way to conduct qualitative data analysis, although there is general agreement that analysis is an ongoing, iterative process that begins in the early stages of data collection and continues throughout the study. Qualitative data analysis, wherein one is making sense of the data collected, may seem particularly mysterious ( Campbell and Gregor 2004 ). The following steps represent a systematic approach that allows for open discovery of emergent concepts with a focus on generating taxonomy, themes, or theory.

Reading for Overall Understanding

Immersion in the data to comprehend its meaning in its entirety ( Crabtree and Miller 1999 ; Pope, Ziebland, and Mays 2000 ) is an important first step in the analysis. Reviewing data without coding helps identify emergent themes without losing the connections between concepts and their context.

Coding Qualitative Data

Once the data have been reviewed and there is a general understanding of the scope and contexts of the key experiences under study, coding provides the analyst with a formal system to organize the data, uncovering and documenting additional links within and between concepts and experiences described in the data. Codes are tags ( Miles and Huberman 1994 ) or labels, which are assigned to whole documents or segments of documents (i.e., paragraphs, sentences, or words) to help catalogue key concepts while preserving the context in which these concepts occur.

The coding process includes development, finalization, and application of the code structure. Some experts ( Morse 1994 ; Morse and Richards 2002 ; Janesick 2003 ) argue that a single researcher conducting all the coding is both sufficient and preferred. This is particularly true in studies where being embedded in ongoing relationships with research participants is critical for the quality of the data collected. In such cases, the researcher is the instrument; data collection and analysis are so intertwined that they should be integrated in a single person who is the “choreographer” ( Janesick 2003 ) of his/her own “dance.” Such an analysis may not be possible to be repeated by others who have differing traditions and paradigms; therefore, disclosure ( Gubrium and Holstein 1997 ) of the researcher's biases and philosophical approaches is important. In contrast, other experts recommend that the coding process involve a team of researchers with differing backgrounds ( Denzin 1978 ; Mays and Pope 1995 ; Patton 1999 ; Pope, Ziebland, and Mays 2000 ) to improve the breadth and depth of the analysis and subsequent findings. Cross-training is important in the use of such teams.

Developing the Code Structure

The development of the code structure is an iterative and lengthy process, which begins in the data collection phase. There is substantial diversity in how to develop the code structure. This debate ( Glaser 1992 ; Heath and Cowley 2004 ) centers on whether coding should be more inductive or more deductive. Regardless of approach, a well-crafted, clear, and comprehensive code structure promotes the quality of subsequent analysis ( Miles and Huberman 1994 ).

Grounded Theory Approach to Developing Code Structure

For grounded theorists, the recommended approach to developing a set of codes is purely inductive. This approach limits researchers from erroneously “forcing” a preconceived result ( Glaser 1992 ). Data are reviewed line by line in detail and as a concept becomes apparent, a code is assigned. Upon further review of data, the analyst continues to assign codes that reflect the concepts that emerge, highlighting and coding lines, paragraphs, or segments that illustrate the chosen concept. As more data are reviewed, the specifications of codes are developed and refined to fit the data. To ascertain whether a code is appropriately assigned, the analyst compares text segments to segments that have been previously assigned the same code and decides whether they reflect the same concept. Using this “constant comparison” method ( Glaser and Strauss 1967 ), the researchers refine dimensions of existing codes and identify new codes. Through this process, the code structure evolves inductively, reflecting “the ground,” i.e., the experiences of participants.

More Deductive Approaches to Developing Code Structure

Some qualitative research experts ( Miles and Huberman 1994 ) describe a more deductive approach, which starts with an organizing framework for the codes. In this approach, the initial step defines a structure of initial codes before line-by-line review of the data. Preliminary codes can help researchers integrate concepts already well known in the extant literature. For example, a deductive approach of health service use might begin with predetermined codes for predisposing, enabling, and need factors based on the behavioral model ( Andersen 1995 ). Great care must be taken to avoid forcing data into these categories because a code exists for them; however such a “start list” ( Miles and Huberman 1994 ) does allow new inquiries to benefit from and build on previous insights in the field.

An Integrated Approach to Developing Code Structure

An integrated approach employs both inductive (ground-up) development of codes as well as a deductive organizing framework for code types (start list). Previous researchers have identified various code types ( Lofland 1971 ; Lincoln and Guba 1985 ; Strauss and Corbin 1990 ; Miles and Huberman 1994 ); however, five code types ( Table 2 ) are helpful in generating taxonomy, themes, and theory, all of which have practical relevance for health services research. These code types are (1) conceptual codes and subcodes identifying key concept domains and essential dimensions of these concept domains, (2) relationship codes identifying links between other concepts coded with conceptual codes, (3) participant perspective codes , which identify if the participant is positive, negative, or indifferent about a particular experience or part of an experience, (4) participant characteristic codes , and (5) setting codes .

Code Types and Applications

Finalizing and Applying the Code Structure

The codes and code structure can be considered finalized at the point of theoretical saturation ( Glaser and Strauss 1967 ; Glaser 1992 ; Patton 2002 ). This is the point at which no new concepts emerge from reviewing of successive data from a theoretically sensitive sample of participants, i.e., a sample that is diverse in pertinent characteristics and experiences. Theoretical saturation will take longer to accomplish for more multifaceted areas of inquiry with greater diversity among participants. If, during analysis, a conceptual gap is identified, the researcher should expand the sample to continue data collection to clarify and refine emerging concepts and codes. For instance, if an observation or interview elicits information about a concept that has not been heard or that contradicts previous understandings, the researchers should expand the sample to include participants and experiences to understand this new concept more fully. This use of the codes to guide data collection is known as theoretical sampling and is central to conducting qualitative research.

Applying the Finalized Code Structure

The application of the finalized code structure to the data is an important step of analysis. One approach to applying the finalized code structure to the data is to have two to three members of the research team re-review all the data, applying independently the codes from the finalized code structure. Then, the team meets in a group to review discrepancies, resolving differences by in-depth discussion and negotiated consensus. The result is a single, agreed upon application of the final codes to all parts of the data. This approach is reasonable and frequently used in the published literature. Another approach to applying the finalized code structure is to establish the reliability of multiple coders from the research team with a selected group of data. Once coders have been established to be reliable with one another, one of the coders completes the remainder of the coding independently. This approach can be more time efficient than the approach that requires the multiple coders to recode all data with the final code structure and then resolve disagreement by joint consensus. Intercoder reliability ( Miles and Huberman 1994 ) can be evaluated by selecting new data (for instance, two to three transcripts that were not analyzed as part of the code development phase before theoretical saturation) and having two researchers code these data, using the finalized code structure. The two researchers code the transcripts independently and compare the agreement on coding used. One calculates the percentage of all segments coded, which are coded with the same codes, and some experts ( Miles and Huberman 1994 ) have proposed 80 percent agreement as a rule of thumb for reasonable reliability.

The approach in each of the steps of qualitative data analysis reflects a balance of differing views among researchers. Formality, including quantifying intercoder reliability, may improve the ability of those less trained in qualitative methods to understand and value evidence generated from qualitative studies. However, overly mechanistic approaches or reliance on inexperienced qualitative analysts may dampen the insights from qualitative research ( Morgan 1997 ). Formal rules and processes should not replace analytic thought itself. In any project, if the codes are not conceptually rich and are oversimplified in their separation from the context of their occurrence, the insights from the inquiry will be limited.

GENERATING RESULTS

We focus on three types of output from qualitative studies—taxonomy, themes, and theory. These outputs can be helpful in a number of ways including, but not limited to, the fostering of improved measurement of multifaceted interventions; the generation of hypotheses about causal links among service quality, cost, or access; and the revealing of insights into how the context of an events might influence various health-related outcomes.

Taxonomy is a system for classifying multifaceted, complex phenomena according to common conceptual domains and dimensions. In health services research, we are often evaluating multifaceted interventions, implemented in the real world rather than controlled conditions. Qualitative methods provide a sophisticated approach to specifying the complexity rather than simple dichotomous characterizations of interventions (i.e., treatment versus control) common in quantitative research ( Sofaer 1999 ). Furthermore, a common language or taxonomy that distills complex interventions into their essential components is paramount to comparing alternative interventions and promoting clear communication. Examples of taxonomy include classification systems for health maintenance organizations ( Welch, Hillman, and Pauly 1990 ), integrated health systems ( Gillies et al. 1993 ; Bazzoli et al. 1999 ), goal-setting for older adults with dementia ( Bogardus, Bradley, and Tinetti 1998 ), and quality improvement efforts in the hospital setting ( Bradley et al. 2001 ).

How does one move from the phase of applying the finalized code structure to generating and reporting taxonomy? If one has applied the code types as described above, then the structure of the taxonomy will mirror closely the conceptual codes and subcodes. Conceptual codes define key domains that characterize the phenomenon; conceptual subcodes define common dimensions within those key domains. Within each dimension, there may be further subdimensions depending on the complexity of the inquiry. Importantly, taxonomies identify domains and dimensions that are broad in nature. For example, in a taxonomy classifying quality improvement ( Bradley et al. 2001 ), we defined six domains that comprise quality improvement efforts in the hospital setting: organizational goals, administrative support, clinician leadership, performance improvement initiatives, use of data, and contextual factors. Within the domain of organizational goals, there were four dimensions (i.e., content, specificity, challenge, sharedness of the goals). For each domain and dimension, the code represents the abstract concept, not the specific statement about that concept. For instance, a domain might be “nursing leadership,” as opposed to the statement, “there is strong nursing leadership here.” The difference is important to recognize as taxonomies describe a discrete set of axes or domains that characterize multifaceted phenomena.

Themes are general propositions that emerge from diverse and detail-rich experiences of participants and provide recurrent and unifying ideas regarding the subject of inquiry. Themes typically evolve not only from the conceptual codes and subcodes as in the case of taxonomy but also from the relationship codes, which tag data that link concepts to each other. For example, as in a study of health services integration ( Gillies et al. 1993 ), three concepts were identified that might form a taxonomy of integration approaches: functional integration, physician integration, and clinical integration. However, the study also suggests that clinical integration requires success in function and, ideally, physician integration before full clinical integration can be achieved. This latter statement might be called a theme, a statement or proposition about how health system integration proceeds. The statement does more than just identify conceptual domains; it also suggests a relationship among the concepts. Similarly, a study of managing a safety-net emergency department ( Dohan 2002 ) identified themes of patients using the emergency department for relief from social, not health, problems and the extreme financial stress that is part of every day in the department. The study also revealed how these tensions were managed, i.e., by defining patients as “interesting cases” and fostering an organizational obligation to provide uncompensated care.

Another approach to developing themes is to conduct a comparative analysis of concepts coded in different participant groups or setting codes. The researcher retrieves data coded with both a conceptual or relationship code and with a participant characteristic code (e.g., fee-for-service Medicare versus traditional Medicare). The comparison can assess whether certain concepts, relationships among concepts, or positive/negative perspectives are more apparent or are experienced differently in one group than in another. These kinds of comparisons are sometimes performed informally by researchers reading and comparing statements and observations; however, formal mechanisms including the use of truth tables ( Ragin 1987 , 1999 ) and explanatory effects matrices ( Miles and Huberman 1994 ) to catalogue the presence of selected concepts among comparisons groups have also been implemented.

Theory emphasizes the nature of correlative or causal relationships, often delving into the systematic reasons for the events, experiences, and phenomena of inquiry. Theory predicts and explains phenomena ( Kaplan 1964 ; Merton 1967 ; Weick 1995). Data tagged by relationship codes are essential to generating and reporting theory. A comprehensive theory will integrate data tagged with conceptual codes and subcodes as well as with relationship and perspective codes. Comparative analysis about group-specific differences is also sometimes used to develop theory.

Theory development can be less bewildering with consistent cataloguing of relationships among concepts, using the constant comparison method to generate inductively conceptual codes and subcodes as well as relationship codes. The process for developing theory is, nonetheless, diverse depending on the subject, the context, and the experience of the researcher. Illustrating theory development, a study of barriers to pediatric health care ( Sobo, Seid, and Reyes Gelhard 2006 ), parents identified a set of six barriers that can limit access and use of critical pediatric services. The study then linked these barriers into a theory about the interaction of necessary skills and prerequisites, realization of access, the site of care, and parent/patient outcomes. Through its theoretical development, the study also suggests a new paradigm for understanding the biomedical health care system, likening it to a cultural system in which parents and patients needed to learn (or be acculturated) to function competently.

Qualitative research methodologies can generate rich information about health care including, but not limited to, patient preferences, medical decision making, culturally determined values and health beliefs, consumer satisfaction, health-seeking behaviors, and health disparities. Furthermore, qualitative methods can reveal critical insights to inform development, translation, and dissemination of interventions to address health system shortcomings. A clear understanding of such methodologies can help the field adopt and integrate qualitative approaches when they are appropriate. Taxonomies, themes, and theory produced with rigorous qualitative methods can be particularly useful in health services research. Taxonomies improve our description and hence, measurement and evaluation, of real-world phenomena by allowing for multiple domains and dimensions of multifaceted interventions. Themes and theory guide our research to explain and predict various outcomes within diverse contexts of the health care system. In this paper, we highlight an integrated approach to qualitative data analysis, which applies the principles of inductive reasoning and the constant comparison method ( Glaser and Strauss 1967 ) while employing predetermined code types (conceptual, relationship, perspective, participant characteristics, and setting codes) to analyze data. A vast body of methodological work conducted over decades has produced impressive innovation and advancement in qualitative research techniques. This paper has sought to translate qualitative data analysis strategies and approaches from this methodological literature to enhance their accessibility and use for improving health services research.

Acknowledgments

Dr. Bradley is supported by the Patrick and Catherine Weldon Donaghue Medical Research Foundation and the Claude D. Pepper Older Americans Independence Center at Yale University. The authors are grateful to Emily Cherlin, MSW, for her research assistance on this project.

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Open access
Published: 15 April 2024

How would you describe a mentally healthy college student based on Chinese culture? A qualitative research from the perspective of college students

Mingjia Guo 1 ,
Xiaoming Jia 1 &
Wenqian Wang 1

BMC Psychology volume 12 , Article number: 207 ( 2024 ) Cite this article

Metrics details

Promoting college students’ mental health remains a significant concern, necessitating a clear understanding of what constitutes good mental health. Variations in the conceptualizations of mental health across cultures, typically derived from academic and authoritative perspectives, have overlooked insights from laypeople. This study aims to investigate the characteristics of mentally healthy college students within Chinese cultural contexts, emphasizing perspectives provided by college students themselves.

Undergraduates with self-reported mental health scores ≥ 7 were randomly selected for in-depth interviews. The sample ( N = 17, 59% female) had a mean age of 20.82 ± 1.33 years and represented diverse regions, backgrounds, and academic fields. Thematic analysis was used in the analysis of the qualitative data, involving initial coding to identify 168 manifestations of mental health among college students, followed by categorizing them into 18 characteristics through focused coding. These characteristics were then organized into five themes via core coding. The Delphi method was utilized to validate the themes with 3 experts, ensuring the trustworthiness of the final findings.

Eighteen characteristics of mentally healthy college students emerged from the interviews, categorized into 5 themes: (1)Value Pursuit (i.e. Having a sense of responsibility and mission and being willing to dedicate oneself to the country at any time.); (2)Life Attitude (i.e. Staying positive and having the ability and quality to cope with hardships.); (3)Interpersonal Ideals (i.e., Showing filial respect to parents appropriately.); (4)Behavior Ability(i.e., Studying diligently and learning well.); and (5)Self-cultivation (i.e., Possessing good qualities advocated by Confucianism, Buddhism, and Taoism coexist harmoniously.). Most of these characteristics directly reflect traditional Chinese culture or culture that has changed with the times. At the same time, some are a reflection of modern Chinese new culture.

Conclusions

On the whole, the characteristics of mentally healthy college students are diverse and with rich connotations, focusing on the individual’s relationship with the country, family, and others, and are good expressions of Chinese cultural features, such as the balance of Yin and Yang, the coexistence of Confucianism, Buddhism, and Taoism, and highlight moral attributes. In essence, these traits hold profound importance in advancing the mental health of Chinese college students.

Peer Review reports

The period of undergraduate study is vital for individual development, physical and mental growth, knowledge reserve, and health literacy development. For undergraduate students, they are in the process of transitioning from late adolescence to early adulthood, navigating various physical, psychological, and social changes [ 1 ]. After entering the university, undergraduates, especially first-year students, are prone to various maladaptation problems due to changes in their living and learning environments [ 2 ]. Notably, a recent nationwide survey of 48,789 undergraduate students from 31 provinces and cities of China showed that 24.17% of undergraduates were at risk of depression, and 49.58% were at risk of anxiety [ 3 ].

Some studies have shown that these psychological problems are related to culture. As a Chinese proverb goes, “Nothing is more important than learning.” Before university, Chinese students focused solely on their studies, with their parents managing all aspects of life [ 4 ]. Consequently, they may lack the ability to independently resolve problems, particularly when confronted with many challenges in university life, often feeling helpless. Furthermore, admission to university is considered an honor to ancestors and a source of pride for parents in Chinese culture [ 5 ]. Attaining good grades and securing an ideal career post-graduation are seen as ways for college students to fulfill their filial duties, like supporting their parents, thus imposing familial and communal pressures.

Cultural influences also play a role in the mental health of college students. Wang et al. (2016) investigated how traditional Chinese philosophies—such as relationship harmony (advocated by Confucianism), dialectical coping (from Taoism), and non-attachment (rooted in Buddhism)—impact college students’ mental health. Their research demonstrated these philosophies’ negative correlation with psychological distress and negative emotions while displaying positive correlations with self-esteem, positive emotions, meaning of life, and happiness [ 6 ]. Another study indicated that Chinese college students scoring higher in Zhongyong thinking exhibit lower anxiety and depressive symptoms, along with higher self-esteem and life satisfaction, versus those with lower scores [ 7 ].

Since culture and mental health are mutually embedded [ 8 ], different cultures may interpret the same things differently. For instance, in Western cultures, pursuing a college education is often viewed as an individual pursuit, whereas in collectivist China, but in China, higher education is commonly sought to elevate social status and offer enhanced financial support to parents, such as securing a comfortable retirement home. In times of conflict, individuals in Chinese society tend to adopt the principle of “taking a step back and yielding vastness and spaciousness to others” [ 9 ], prioritizing long-term harmony over immediate gains by favoring conflict avoidance over confrontation. The values of “harmony is precious” and the practice of “forbearance” are revered in China, whereas in Western societies, it may be considered unhealthy, with individuals opting for direct expression of discontent [ 10 ].

In China, only 8% of the population hold bachelor’s degrees [ 11 ], and college students are seen as the nation’s hope and future [ 12 ], underscoring a heightened focus on their mental health. To enhance the mental health of Chinese college students effectively, it is imperative to grasp the cultural nuances defining mental health across various contexts.

Mental health has always been a focus in the field of psychology. Researchers from diverse backgrounds have extensively investigated mental health within various cultural frameworks. This includes the development of nuanced interpretations and pertinent theories regarding mental health across different cultural settings [ 13 , 14 ]. Moreover, scholars have localized measurement tools through meticulous adaptations [ 1 , 15 , 16 , 17 ] and delved into understanding the impact mechanisms between mental health and its associated determinants [ 18 , 19 ]. In terms of the connotation of mental health, aside from the various approaches of counseling and psychotherapy have their interpretations and definitions of mental health, various organizations and scholars have also put forward different perspectives of mental health from multifaceted viewpoints, clearly demonstrating the impact of culture.

According to the Concise Encyclopaedia Britannica, mental health is defined as “the state of optimal functioning of the individual psyche within the limits of its own and environmental conditions, but not as an absolute state of perfection” [ 20 ]. Meeks and Heit describe mental health as “the ability to perceive and express one’s emotions and state of mind; mental health is the ability to accept reality as it is” [ 21 ]. Meanwhile, Ryan and Deci propose that mental health involves “the ability to feel effective and agile, e.g., to have full self-fulfillment” [ 22 ]. The World Health Organization defines mental health as “a state of well-being in which the individual realizes his or her abilities, can cope with the normal stresses of life, can work productively and fruitfully, and can make a contribution to his or her community” [ 23 ]. These definitions illustrate how Western culture emphasizes individual capabilities, states of being, and overall well-being, focusing on fulfilling potential, fostering self-esteem, and reflecting a culture centered on the individual.

In the Dictionary of Psychology (Chinese version), mental health was defined as “a good state in which the individual’s mental state (e.g., general adaptability, soundness of personality) remains normal or at a good level, and in which harmony is maintained within the self (e.g., self-awareness, self-control, self-experience) and between the self and the environment” [ 24 ]. According to Zhang and Yang, mental health contains objective and subjective components [ 25 ]. An individual’s mental health is mainly expressed by the relationship between the individual and others in a group, so it contains social meaning. Hu suggests that mental health is about “following one’s heart and not exceeding the rules,” which has both its individual (developmental and autonomous) and social (adaptive and normative) aspects [ 26 ]. Yip defines mental health as a direction that suggests self-discipline and obedience to social order to maintain inner balance and external harmony with others [ 27 ]. Specifically, individuals can maintain this balance and harmony across three levels: personal, interpersonal, and moral/ethical. These definitions underscore Chinese scholars’ emphasis on the social aspects of the individual in conjunction with the proper functioning of mental faculties. They highlight Chinese culture’s focus on harmony, interpersonal relationships, societal connections, and moral/ethical considerations.

In summary, concepts and understandings of mental health are closely tied to culture [ 28 ], reflecting that the connotations of mental health defined by different cultural contexts can vary to some extent. Then, how is mental health related to culture? The theory of sociocultural models (TSCM) provides a perspective on the interaction between culture and the individual mind [ 29 ].

The primary thesis of the theory of sociocultural models (TSCM) is that the human mind and culture mutually constitute each other. During continued interactions, individuals internalize the social culture into their psychological realities to regulate their actions and interactions. Conversely, community members will externalize the psychological reality through enactment and instantiation, creating new social cultures through social interactions and co-construction with the existing social culture. The dialectical interactions of these two aspects constitute the mechanism of the sociocultural regulation of human actions and the construction of the sociocultural reality [ 29 ]. Consequently, social culture dictates varying expectations for mental health standards, while the characteristics associated with mental health are also culturally rooted and reflect social culture. Simultaneously, societal depictions of mentally healthy individuals contribute to the evolution of novel cultural norms in a reciprocal manner.

The Chinese culture has a long history of rich mental health concepts deeply rooted in philosophies such as Confucianism, Buddhism, and Taoism. Confucianism seeks to go into the society( Rushi ), i.e., “To ordain conscience for Heaven and Earth, to secure life and fortune for the populace, to carry on lost teachings of ancient sages, to build peace for posterity” (Zhang Zai: Heng Qu Yi Shuo ). When encountering setbacks, Confucianism advocates being adaptable to circumstances and maintaining mental health by being resilient and motivated. Taoism seeks to transcend the world( Chaoshi ) and advocates “letting go.”When encountering difficulties, people maintain mental health by going with the flow and doing what they should do. The philosophy also underscores the importance of balancing Yin and Yang, enabling individuals to perceive challenges holistically by acknowledging both positive and negative aspects. Buddhism seeks to jump out of the material world( Chushi ) and advocate “being free of worried thoughts” when encountering difficulties. As Hui Neng(the Sixth Patriarch of Zen) said in the Tan Jing, “Since everything is naught, where can dust gather?” Individuals can cope better with difficulties if they have a mindset that looks down on gains and losses and that everything is nothingness.

Popular anecdotes and proverbs in Chinese culture also dictate criteria for individuals’ mental health. For instance, the “Three Feet of Space” tale narrates an incident from ancient China where the Guo family faced a boundary dispute with their neighbor during house construction. Upon hearing of this issue, patriarch Guo Pu wisely proposed, “Sending letters a thousand miles just for a wall; why not give him three feet?” This led to the Guo family’s compromise, and finally, both families conceded three feet of space from their walls. This narrative underscores the cultural emphasis on fostering interpersonal harmony through mutual accommodation, viewing discordant relationships as signs of poor mental health.

Contemporary scholars have also endeavored to directly integrate key concepts from Chinese traditional culture into psychological counseling and therapy. Yang and his colleagues(2002) [ 30 ] created Taoist Cognitive Therapy to facilitate cognitive restructuring in psychologically distressed individuals by directly applying the 32 characteristics of the Taoist principle of health, that is: “Benefit without harm, but not disputing; abstinent contentment with little selfishness and desire; under the knowledge and the place, let gentleness overcome rigidity; recover the original simplicity, let it be.” Liu(2023) posits that “unity of universe and human” in Chinese culture is a core idea of mental health [ 31 ]. He pointed out that the psychological phenomenon corresponding to this concept is psychological nothingness. By fusing modern psychotherapy with the concept of “unity of universe and human,” Liu developed the technique of “Moving symptom’s symbol to nothingness” to fulfill the healing role of Chinese culture. These endeavors establish a robust framework for comprehending mental health through the lens of Chinese cultural perspectives.

Over the years, numerous scholars have delved into the attributes of mentally healthy college students. Prominent among these is Wang and Zhang’s widely recognized framework, which outlines eight characteristics drawing from personal experience: understanding and accepting oneself; accepting others and dealing well with them; facing reality squarely and accepting it; loving life and enjoying work; being able to coordinate and control emotions and being in a good state of mind; having a complete and harmonious personality; having normal intelligence; and having age-appropriate mental behavior [ 32 ]. However, this work has predominantly focused on psychological cognition, emotion, and intention, with limited consideration of the cultural context, particularly the influence of Chinese culture on mental health.

Subsequently, scholars such as Zeng and Lei, incorporating social, ethical, and moral perspectives, proposed a culturally nuanced framework emphasizing four main traits in mentally healthy college students: positive and controllable emotions, good moral values, comfortable coping with schoolwork, and healthy social interaction [ 33 ]. While valuable, this perspective primarily mirrors researchers’ subjective experiences and authority-driven viewpoints. It neglects insights from laypeople, omits identification of the aspects of Chinese culture showcasing characteristics of mentally healthy college students, and lacks differentiation between mentally healthy college students and other demographic groups. Consequently, there is a demand for exploring innovative methodologies to scrutinize the attributes of mentally healthy college students, particularly focusing on characteristics within Chinese culture.

Currently, there are various research paradigms for the study of mental health. Jiang (2004) categorized them and concluded that there are two main principles in evaluating mental health: the majority principle and the elite principle [ 34 ]. The majority principle refers to a research paradigm that selects research subjects through large samples and measures whether individuals deviate from the norm through the principle of statistical normal distribution [ 35 ]. An example is applying the Chinese version of Symptom Checklist-90 (SCL-90), one of the most often used self-report symptom inventories to measure the mental health of college students, and individuals scoring exceeding the norm were considered abnormal [ 36 ].

The elite principle refers to a research paradigm that focuses on elite samples, namely a small number of relatively outstanding individuals in the whole population who are at the tip of one side of the normal distribution, and primarily employs qualitative research methods to derive research findings [ 35 ]. For example, Maslow researched some great people in Western history( i.e., self-actualized people) using qualitative research methods such as biographical analysis, depicted 15 characteristics of self-actualized people, that is, “more efficient perception of reality and more comfortable relations with it,” “acceptance (self, others, nature),” “spontaneity; simplicity; naturalness,” “problem centering,” “the quality of detachment; the need for privacy,” “continued freshness of appreciation,” “autonomy; independence of culture and environment; will; active agents,” “the mystic experience: the peak experience,” “gemeinschaftsgefuhl,” “interpersonal relations,” “the democratic character structure,” “discrimination between means and ends, between good and evil,” “philosophical, unhostile sense of humor,” “creativeness,” “resistance to enculturation; the transcendence of any particular culture” [ 37 ].

Maslow’s findings profoundly influenced research on mental health definitions, standards, and interventions. While some researchers have embraced the characteristics of self-actualized people as an ideal standard of mental health [ 38 ], others have leveraged these characteristics by focusing on exceptional psychological qualities rather than normative behavioral performance [ 39 ], and many of these characteristics have been used as ideal indicators of mental health for the promotion of mental health among college students [ 40 ]. Additionally, these characteristics and the conditions that promote or inhibit self-actualization are also applied in methods and paths of healthy human development [ 41 ]. Furthermore, specific characteristics such as a “philosophical, unhostile sense of humor” have been directly applied by researchers to enhance humor quality among college students facing stress and embarrassment, aiming to uphold their mental well-being [ 42 ].

Despite significant value in both theory and practice, Maslow’s study is based on the Western culture and is not aimed at a specific group of college students. Consequently, its direct relevance to enhancing the mental well-being of Chinese college students may be limited, necessitating further investigation into mental health within the framework of Chinese culture. Nonetheless, Maslow’s study of the elite samples of self-actualized people also provides a new research paradigm for mental health research, which has greatly inspired this study.

In the past, most studies on the mental health of college students used quantitative studies based on the majority principle. While some qualitative studies inquiries delved into the characteristics of mentally healthy college students, these studies often focused on specific subgroups like those who experienced being left behind [ 43 ] or childhood trauma [ 44 ]. A gap exists in the mental health characteristics based on the Chinese culture of college students who are the elite samples, i.e., those who exhibit very good mental health. By utilizing the elite principle paradigm, researchers can gain insights into and depict the mental health characteristics of college students within the context of Chinese culture, with the ultimate aim of delineating the mental health characteristics of college students specific to this cultural framework.

This study will apply the elite principle to examine college students with very good mental health. Through a distinctly Chinese cultural lens, this research aims to delineate what mentally healthy college students look like and what characteristics they show. By focusing on college students’ personal experiences and Chinese culture, this study positions college students as knowledge generators, employing a qualitative research approach to uncover the characteristics of mentally healthy college students. The objective is to achieve a new understanding of college students’ mental health based on Chinese culture and provide a theoretical basis for new mental health standards and a reference for promoting, cultivating, and intervening in college students’ mental health.

In this study, mental health refers to the good psychological state of an individual. College students refer to the group of students who are receiving professional higher education. Chinese culture refers to the culture created by the Chinese over thousands of years of development, from ancient times to the present [ 45 ].

The study applied a participatory, exploratory, qualitative design. Qualitative methods are suitable for exploring the meaning of phenomena or life events to the interviewees and their inherent experiences from the subjectivity of the interviewees [ 46 ]. It also emphasizes the participants as a generator of knowledge and the acquisition of significant experiences from the participants [ 47 ]. Thus, it can help researchers to gain a deeper understanding of community members in a specific cultural-historical context. Moreover, qualitative methods hold particular promise for prioritizing participants’ voices, and they contribute to understanding human interaction with the environment in development and helping researchers build and expand new concepts and theories in specific cultural-historical contexts [ 48 ]. This study used semi-structured individual in-depth interviews to explore the characteristics of mentally healthy college students based on Chinese culture. Moreover, the procedure of the study is shown in Fig. 1 .

The procedure of the study

The development of the interview outline

The qualitative data for this study was collected through semi-structured interviews. Interviews serve as a tool to help reveal and understand participants’ perspectives and experiences. The interview outline for this study was based on the theory of sociocultural models [ 29 ], focusing on how the interviewed college students understood Chinese culture and which cultures were internalized as characteristics of mentally healthy college students.

The interview outline in the pre-interview includes questions such as “What do you think is mental health? What do you think a ‘mentally healthy’ college student is like? You can use yourself or your classmates as examples.” “What do you think is Chinese culture? What is your understanding of Chinese culture?” “What do you think is related to college students’ mental health in Chinese culture?” (Appendix 1 ).

Participant recruitment and selection

The selection criteria for the participants were: i) undergraduate students enrolled in colleges; ii) having a very good psychological status, with a self-assessment of mental health of 7 or more (out of 10); and iii) self-assessment anxiety/depression scores within the normal range.

The study recruited participants through postings in contact groups and forums among different colleges. Undergraduates who satisfied the selection criteria volunteered to participate in the study. At the time of self-referral, enrolled students rated their mental health with the term “Out of ten, how would you rate your mental health?” as well as filled out self-rated anxiety and depression scales [ 49 , 50 ].

The reasons for considering selection criteria are as follows. Firstly, the research objective is to identify the mental health characteristics of college students with good mental health. Therefore, following the elite principle and referencing Maslow’s self-actualization research paradigm [ 37 ], we have chosen exceptionally mentally healthy college students as elite samples for study. Given that statistical analysis commonly regards the top 27% as the criterion for high-score groups [ 51 , 52 ], a score of 7 out of 10 indicates high mental health levels. Consequently, the study interviewed college students scoring at least 7 points. Secondly, to eliminate individuals with significant biases in the self-assessment of mental health and those potentially experiencing psychological issues, we utilized scores from self-rating scales for depression and anxiety to exclude possible candidates with underlying psychological disorders.

Eventually, 17 college students who met the criteria were selected for interviews in this study. The selection of participants considered factors that might influence college students to develop different understandings of Chinese cultures, such as upbringing, family environment, and educational experiences. The total number of participants was determined based on thematic saturation, i.e., no significant themes emerged with new respondents [ 53 , 54 ]. Finally, 17 undergraduate students volunteered to participate in the formal interviews, and the self-reported mental health score of the interviewees was 8.11(SD = 0.90) (out of 10). Among the participants, seven were male, and ten were female. Their ages ranged from 19 to 23 years old (mean age = 20.82, SD = 1.33 years), five interviewees were from Double World-Class Project Universities in China, and 5 were first-year students, two sophomores, eight juniors, and two seniors. Participants came from different regions of China; 4 grew up in north China, 1 in northwest China, 2 in southwest China, 2 in south China, 1 in east China, and 7 in central China; 1 from an ethnic minority. 65% were from urban areas, and 29% had no siblings. Additional information on parents’ education level and occupation is shown in Table 1 .

After the interviews, participants were thanked for their participation and contribution and were offered 30 RMB (about 4 dollars) for participating.

The finalization of the interview outline

Before the formal interviews, three college students (one male and two female) who met the selection criteria were pre-interviewed, and the interview outline was adjusted based on the pre-interviews. Specifically, the researchers adjusted ambiguous expressions. For example, in the pre-interview, the researchers found that if they asked the interviewees, “What do you think is related to college students’ mental health in Chinese culture?” They answered how Chinese culture affects college students’ mental health rather than the characteristics of mentally healthy college students based on Chinese culture. Therefore, we adjusted the question to “What a ‘mentally healthy’ college student is like based on Chinese culture? You can take yourself or your classmates as an example” to obtain the characteristics of mental health that reflect Chinese culture. A formal interview outline was eventually formed (Appendix 2 ).

Data collection and analysis

The qualitative data was collected through in-depth personal interviews with eligible college students. Each interview lasted between 50- 100 min and was conducted by the researcher (MG), who possessed a doctoral background in psychology, had received training in qualitative research methods, and had three years of experience working in mental health education in universities. All participants signed informed consent forms prior to the interviews. In total, 1252 min of interviews were conducted with 17 participants, which were then manually transcribed by MG, resulting in 289,000 words of interview transcripts.

To accurately ascertain the true meaning expressed by the participants, this study employed manual analysis within the research team to code and analyze the interview transcripts word by word and sentence by sentence. Under the guidance of XJ (a clinical and counseling psychology professor), the research team completed all data analysis work. In addition to MG and WW, the team members included two doctoral students who are also full-time university psychological counselors and two master’s students specializing in mental health education.

The data analysis was conducted using thematic analysis [ 55 ]. The steps are as follows: first, the researcher transcribed each of the digitally recorded interviews, immersed within the data, and repeatedly read through the 289,000-word interview transcripts. Second, researchers identified meaningful texts and created open codes. Each meaningful sentence was marked with a “code number,” totaling 1,889. The study used “F” to represent female interviewees and “M” for male participants. The first number represents the interview orders of interviewees; the second number represents the order of the meaningful statements in the interview. For example, “M5-40” represents the 40th word, sentence, or paragraph spoken by the fifth male interviewee. Third, after contemplating the open codes repeatedly, 168 manifestations of mentally healthy college students were derived through initial coding. These manifestations were then summarized to establish 18 characteristics of psychologically healthy university students via focused coding. Subsequently, these 18 characteristics were further classified through core coding to derive five main themes. Fourth, we checked the themes and adjusted their structure until they met internal homogeneity and external heterogeneity criteria. Fifth, we defined and named the themes; 18 characteristics were obtained and coded into five themes.

The Delphi expert evaluation

Subsequently, three experts were invited to assess the appropriateness of naming, defining, and classifying the identified 18 characteristics and five themes above. These experts are professors in clinical and counseling psychology from institutions such as Beijing University of Chinese Medicine, with in-depth research in Chinese culture and mental health. They have published numerous related monographs and academic papers, such as “When Psychological Counseling Meets Traditional Culture” and “Mind Operations in Meditation.”

The evaluation comprised two rounds. The first round involved a focused group interview where the three experts individually reviewed each theme, characteristic, and original interview data, offering suggestions for revision. They generally approved of the theme divisions and most characteristics, with two main modifications: 1) the integration and categorization of specific characteristics, such as the initial characteristic “Having a pleasant disposition,” which was deemed by experts to contribute to a comfortable interpersonal state and thus was incorporated into “Interpersonal harmony and comfort.” 2) Adjustments to specific nomenclature, such as refining “Showing filial respect to parents” to “Showing filial respect to parents appropriately” to better emphasize the nuance of the characteristic.

The revised results were resent to the three experts for a second round of evaluation, leading to a consensus with no further modifications suggested, thus finalizing the research findings.

The trustworthiness of the data

Trustworthiness was achieved in several ways.

First, to minimize personal biases to the greatest extent possible, the researchers continuously reflect at each stage of the research project, remaining attentive to the influence of their own experiences and biases throughout all research and analysis phases. For instance, MG utilized a reflective journal [ 56 ] to document personal perspectives after each interview, consistently reminding herself to avoid preconceived notions.

Second, the selection of participants considered factors that might influence college students to develop different understandings of Chinese cultures to ensure the diversity of the participants. And, the total number of participants was determined based on thematic saturation [ 53 , 54 ]. In this study, after interviewing the F8(the 14th interviewee), no new significant themes emerged. Then, three more interviews were conducted (F9, F10, M7), and no significant themes emerged with the new respondents.

Third, the research performed investigator triangulation [ 57 ]. Independent researchers completed comparative analyses of individual findings, organized regular research team meetings to compare the analyses, and identified relevant themes. Moreover, XJ frequently reviewed interviews conducted by MG, her reactions to interviews, and the formulation of results. All the researchers discussed the coding and the corresponding original text until a consensus was obtained to bolster the study’s credibility and dependability.

Fourth, external audits are conducted to foster the accuracy or validity of a research study [ 57 ]. The research invited three experts above who have made achievements in Chinese culture and mental health to assess the appropriateness of naming, defining, and classifying the characteristics and themes in order to enhance the reliability of research findings.

College students’ understanding of Chinese culture

The interviewees’ understanding of Chinese culture was focused on the following four main aspects, and the participant’s identifier follows quotations.

Firstly, Chinese culture is undoubtedly distinct from other countries. For example, F1 believes that “Chinese culture is not just some fixed dynasties in history, or language, or what some literati or educators or some people said, it refers to some patterns of behavior or some ideas that distinguish people from other countries” (F1-66) and is unique to China (M3-110).

Secondly, Chinese culture includes both traditional and modern Chinese new cultures (e.g., revolutionary spirit, M2-95, M4-151, M7-85). Moreover, it is argued that Chinese culture is the essence of what has been left behind through history, including all aspects that have been handed down from ancient times to the present (M1-99; M5-128), and that it is a continuous transmission (F2-72, F4-92, F5-170, F7-137; F9-181; M6-132) and a fusion of the old and the new (F7-142). Chinese culture is implicitly formed and constantly influences and permeates everyone or their lives (F3-134; F7-138; M1-102; M3-111).

Thirdly, Chinese culture is a macro concept, encompassing both intangible and physical aspects. Intangible aspects include thoughts, spirits, and qualities (M2-95, M4-151, M5-131). The physical component includes not only literary works such as poetry (as perceived by all respondents) but also Chinese language and writing (Chinese characters, F2-75; oracle bone inscriptions, F9-184; calligraphy, F2-77, F5-170, F8-94), architecture (F3-148; F10-98), costume (F3-141; F10-101), and folkloric performances (drama, F2 -74; shadow puppets, F5-168; martial arts, F7-141), gastronomy (M5-132), art (painting, F8-93; paper-cutting, M1-100, M2-96, F5-169; china, M2-97; F2-75), traditional festivals and customs (M3-107; F3-138; F5-166; F7-140; F0-97. M7-87) and many others.

Fourthly, some important historical and modern figures mainly reflect Chinese culture’s ideological and spiritual aspects. For example, the famous statesman and literary figure Wen Tianxiang of the late Southern Song dynasty, whose poems “Everyone must die; let me but leave a loyal heart shining in the pages of history books” showed the interviewees his righteousness (M4-122), resilient, his moral integrity (F6-77), and his fearlessness in dedicating his life to his country (M2-72). There is also Zhou Enlai’s ambitious pursuit of “Reading for the rise of China” (M4-62), Mao Zedong’s sense of family and country and the importance he attached to learning (M5-43), and Qian Xuesen’s strict demands on himself during his research (M4-126). The interviewees also made many references to literary figures, such as Li Bai, a poet of the Tang dynasty, whom several interviewees mentioned for his free and ease in the face of frustration (M2-92, M6-30), and his ability to show his spontaneous side in life and learn things spontaneously(M5-54). As well as the ambition of Du Fu showed in his poem “When you are standing on the peak, you are on top of the world” (M5-36), and his sense of responsibility (M1-91, F3-56) reflected in his other poem, “To Emperor Yao and Shun, and to make the customs simple again” (M1-91, F3-56). They also talked about Su Shi’s open-mindedness (F8-79; M6-9) and cheerfulness (M5-29) in the face of adversity, who is a famous poet, calligrapher, gourmet, and hydraulic expert in the Northern Song Dynasty; and also the inner peace(M6-15) and indifference (F3-53) of Tao Yuanming (a famous idyllic poet in the Eastern Jin Dynasty) from his poem “I pick fence side asters at will; carefree I see the southern hill,” and so on.

In addition, the spirit of Chinese culture is also reflected in some allusions and some historical events in ancient and modern times, for example, “Mencius’ mother moves her home three times to better her son’s education” (F1-60), “Che Yin makes use of the light of fireflies or the reflected light by the snow to study” and “Kuang Heng dug a small hole on the wall in order to get some light from the neighbor’s house to read books” (F1-61; F8-34). These allusions convey the importance of studying hard even when conditions are limited. Also, the revolutionary spirit of the May Fourth Movement shows that young people are not afraid of sacrifice (M4-29), and the New Democratic and Industrial Revolution embodied the unity of the Chinese people (M7-91).

Characteristics of mentally healthy college students based on Chinese culture

There are eighteen characteristics of mentally healthy college students based on participants’ understanding of Chinese culture as described above, which is coded into five core themes: (1) value pursuit, (2) life attitude, (3) interpersonal ideal, (4) behavior ability, and (5) self-cultivation. It can be seen that the vast majority of the mental health characteristics reflect traditional Chinese culture, which is constantly being passed down and changed, with the remainder reflecting the influence of modern Chinese culture. The five themes and corresponding characteristics are shown in Table 2 . The results are presented below, and the participant’s identifier follows quotations.

Value pursuit

Value pursuit refers to an individual’s understanding and practice of life ideals and beliefs after integrating social consciousness, such as worldview, life view, and values. Participants described that mentally healthy college students based on Chinese culture have strong beliefs and goal pursuits of contributing to the motherland. They exhibit profound loyalty towards their motherland, viewing its service as their sacred duty, and are steadfast in their resolve to contribute through bold exploration, even in the face of daunting challenges or the prospect of personal sacrifice. This theme directly reflects the Chinese Confucian culture of “Self-cultivation is the starting point of several steps moving outward. The next step is managing family affairs, followed by governing the state. The final step is moving to provide peace and sound governance to all under heaven” and “To be the first in the country to worry about the affairs of the state and the last to enjoy oneself.” The following three subthemes were identified regarding students’ value pursuit.

(1) Loving their motherland and identifying with their culture

First and foremost, mentally healthy college students love their country and are firmly convinced that they want to identify with it. Twelve interviewees emphasize that mentally healthy college students should embody love for their country, cultural identification, and a profound sense of belonging and national pride. On the one hand, they are patriotic and loyal to their motherland and have high moral characters. For example, one participant said, “ like the patriotism in Yue Fei (a famous military man, strategist, calligrapher, poet, and national hero in Chinese history, and was the first of the Four generals rebuilding the Song dynasty). His patriotism and loyalty are also what a mentally healthy college student should have ” (#M6-54).

On the other hand, they identify with the country, nation, and culture from the heart and are proud of the motherland. Another participant said, “ Mentally healthy college students should have a real sense of cultural identity. Furthermore, a Chinese should identify with the traditional Chinese culture …… ” (#F3-110).

(2) Having a sense of responsibility and mission and being willing to dedicate oneself to the country at any time

In addition, mentally healthy college students have a firm sense of mission and responsibility to the motherland. Ten interviewees assert that mentally healthy college students should exhibit a sense of national responsibility, ambitious aspirations, and a readiness to devote themselves to their homeland wholeheartedly. Mentally healthy college students should have ambitious ambitions. As M1-75 said: “ ‘To ordain conscience for Heaven and Earth, to secure life and fortune for the populace, to carry on lost teachings of ancient sages, to build peace for posterity’ (Zhang Zai: Heng Qu Yi Shuo), which can also reflect the looks of a mentally healthy college student. ”

The most important thing is to be willing to contribute to their motherland, even at the expense of oneself. Another participant said, “ Mentally healthy college students do not think about personal gains and losses too much but put their country and nation before themselves, ……, ‘Death is not my concern should it benefit the country. How can I pick and choose for my loss or gains?’ (Lin Zexu) …… ” (#M7-22).

(3) Daring to criticize, explore, and innovate

At the same time, mentally healthy college students have the quest and conviction to keep climbing to the top. Sixteen interviewees believe that mentally healthy college students are enterprising, daring to criticize, explore, and innovate to contribute to their country’s development. Mentally healthy college students are active, enterprising, and have goals and plans. One participant said, “ I think mentally healthy college students should have goals and plans for themselves ” (#M6-3). They also have critical thinking and exploratory spirit and will keep innovating. As F7 said, “ If you are a mentally healthy college student, you also need some innovative spirit to break through …… ” (#F7-59). Also, they are willing to explore and contribute to the country’s development, as M4 said: “ Mentally healthy college students should be like Qian Xuesen (also known as Tsien Hsue-she), who has a strong spirit of patriotism. He devoted himself to scientific research, and after countless attempts and explorations, he finally launched the first atomic bomb for China …… ” (#M4-124).

Life Attitude

Life attitude is an individual’s understanding and reaction to things that happen in daily life. Participants highlighted that maintaining a positive, optimistic, dialectical, and open-minded stance towards setbacks and challenges is a key characteristic of mentally healthy college students. This theme directly reflects Chinese culture: “Someday, with my sail piercing the clouds, I will mount the wind, break the waves, and traverse the vast, rolling sea.” and “It is blessed to suffer losses.” The following four subthemes regarding students’ life attitudes were identified.

(1) Loving life and being positive

Mentally healthy college students hold positive attitudes about life. Fourteen interviewees believe that mentally healthy college students exhibit optimistic attitudes toward life. Mentally healthy college students approach life optimistically, viewing it as brimming with hope. As F9 mentioned, “ I think I am mentally healthy because I am quite positive and optimistic about life, and I will face it positively even if there are some bad things ” (#F9-149). Moreover, they love life and experience life from their heart, “ I think mentally healthy college students can live a good life. Particularly, they can still maintain a love for life, have something they want to do, have the energy to fight or to live. ” (#M2-2). They always think life is full of meaning. As F1 said, “ I think some of the cases (of mental ill health) are because they have lost hope in life and do not want to do anything ” (#F1-47).

(2) Staying positive and having the ability and quality to cope with hardships

Mentally healthy college students possess a positive attitude towards suffering and setbacks. All interviewees believe that mentally healthy college students have a positive view and the qualities of coping with suffering when facing life difficulties. They will not shy away from adversity; instead, they proactively address issues, surmount obstacles, and manage them with composure. When facing difficulties or setbacks, mentally healthy college students maintain constructive beliefs. As one participant said: “ ‘Just as heaven keeps moving forward vigorously, a man of virtue should strive continuously to strengthen himself’ (The Change of Book). And ‘When Heaven intends to confer a great responsibility upon a person, it first visits his mind and will with suffering, toils his sinews and bones, subjects his body to hunger, exposes him to poverty and confounds his projects. Through this, his mind is stimulated, his nature strengthened, and his inadequacies repaired’ (Mencius). A mentally healthy college student should be like as described in these statements. ” (#F9-25).

They also exhibit the qualities to cope with hardships, such as striving continuously to strengthen themselves, being indomitable, resilient, enterprising, and so on. “ I think indomitable also reflects the self-control mentioned earlier, that is, they will not give up even after experiencing more difficulties ” (#M4-136).

Furthermore, they can analyze and resolve problems amid adversity and challenges, effectively overcoming them. “ For a long time, when my friends and I encounter setbacks, crises, or challenges, I always use this phrase to encourage myself and others to handle it calmly, ‘to be unchanged in front of the collapse of the mountain Tai, and to face danger without being surprised when it suddenly comes in front of you.’ ” (#M7-6).

(3) Being flexible and dialectical

Mentally healthy college students have a dialectical attitude towards life. Ten interviewees noted that mentally healthy college students demonstrate critical thinking skills by approaching situations objectively, comprehensively, and dialectically. These dialectical concepts, attitudes, and behaviors when facing negative things in life are also characteristics of mentally healthy college students. One participant said, “ Mentally healthy college students should be as objective and comprehensive as possible when dealing with things ” (#F3-118). They do not dwell on the present and have a positive attitude toward the future, “ There are plenty of fish in the sea. Do not miss the whole forest because of a tree. Even if you are sad about a breakup, do not cling to the past, but try to live a new life ” (#M7-12).

Furthermore, they think dialectically and believe that all sufferings have its reward. As F1 said: “ A saying goes that ‘Someday This Pain Will Be Useful to You,’ which means that it is not always bad to suffer Loss; think long term. For example, one may sometimes feel that their interests are being threatened in interpersonal relationships. However, if they are particularly concerned about this, it will make them uncomfortable, while if they are generous or forgiving, their heart will become more open ” (#F1-24).

(4) Being inclusive and broad-minded

Mentally healthy college students have an open-minded attitude toward life. Sixteen interviewees believe mentally healthy college students are tolerant, broad-minded, and open-minded. Both for themselves and others, mentally healthy college students hold tolerant attitudes. A participant said, “ I may lack a little tolerance for others because I am always strict with myself, so I may sometimes be strict with others. So, from this point of view, I think my mental health level needs to be further improved ” (#M2-79). They are broad-minded (“ Be magnanimous, as the saying goes, ‘A prime minister’s mind should be broad enough for poling a boat,’ which is a sign of college students’ mental health, advising people to look at whatever things a little more openly ”, #F6-34).

Moreover, even in the face of life’s misfortunes, they are also very liberal and open-minded, able to accept them openly. As M6 mentioned, “ One should also have positive and healthy perceptions. Su Shi, a famous poet, calligrapher, gourmet, and hydraulic expert in the Northern Song Dynasty, openly accepted the fact that he was deprived of his official position. Instead of being depressed daily, he lived an easy and interesting life, free and relaxed ” (#M6-9).

Interpersonal ideal

Interpersonal ideals refer to the pursuit and aspiration of individuals to achieve the best in interpersonal communication and good relationships. According to these interviewees, the characteristics of mentally healthy college students can be divided into general and specific interpersonal relationships. Regarding general interpersonal relationships, mentally healthy college students are friendly and kind, and their interactions with others are harmonious and comfortable. When navigating specific relationships like those with parents, they are filial but have rational thinking; in terms of friendship and romantic partnerships, they pursue ideal and pure relationships. This theme is a direct reflection of Chinese culture: “benevolence,” “harmony is precious,” “The relations between men of virtue are plain like water,” “filial piety,” and so on. The following four subthemes were identified regarding students’ interpersonal ideals.

1） Being benevolent and kind

Mentally healthy college students are benevolent and kind in their interactions with others. Thirteen interviewees believe mentally healthy college students are kind-hearted, compassionate, sincere, caring, and helping others without discrimination. Mentally healthy college students are benevolent and have compassion for others; as M7 mentioned, “ When I met beggars on the road, …… whether they are pretending or be, I am always willing to give them some money…… ” (#M7-54). They are kind-hearted (“ I think a person should be at least kind-hearted; he may have that kind of empathy inside, have that kind of emotion for either other people or animals, ……, and have a softer heart, which also reflects the mental health of college students ,” #F6-45). They treat people gently and friendly (“ Laozi and Confucius look gentler than others, I feel that this characteristic in them also indicates the mental health of college students ,” #M3-73).

Furthermore, they are helpful and kind to others. As one participant said, “ Imagine this: You’re in a crowd, and a bike tumbles to the ground. Everyone is looking around, unsure of what happened. Now, you’re caught in a bind: Should you lend a hand or stay back to avoid being wrongly accused? Despite the chance of misunderstanding, I feel it’s crucial to step up and help. Ignoring the situation just doesn’t sit right with me—it goes against everything I believe in. ” (#F5-161).

2） Interpersonal harmony and comfort

Mentally healthy college students have a harmonious and comfortable interpersonal state. All interviewees agree that mentally healthy college students exhibit pleasant character and interpersonal adeptness, adhere to fundamental Chinese cultural values, and maintain a more harmonious and comfortable relational environment compared to their peers. Mentally healthy college students experience interpersonal harmony and comfort; one interviewee said, “ A mentally healthy college student has better interpersonal relationships, ……and has a comfortable social state ” (#F1-17). In interpersonal interaction, they prioritize harmony (“ I quite agree with the saying ‘Peace is of paramount importance. Since we are studying together, it is important to take care of each other and try to understand each other ”, #M3-49). Besides, they have good interpersonal interactions (“ ones’ mental health, I think, also shows more in whether they can deal with interpersonal relationships with people around them, …… whatever kind of people may meet, they can deal with the relationship well ”, #F6-9).

Moreover, they appreciate others (“ If other people have gained a certain amount of academic achievement, …… if he is (mentally) healthy, he may be happy for others’ success, achievement ”, #M7-33). Also, they can resolve conflicts or contradictions in interpersonal relationships (“ There is no perfect person; for example, if they cause harm to others, they can recognize their mistakes and apologize timely and honestly ,” #M6-101).

Furthermore, they follow many guidelines to create a harmonious and comfortable interpersonal state. As F3 mentioned, “ I think, when it comes to some unimportant things, it is important not to bother others like that…… one should have the sense of proportion ” (#F3-39).

3） Having a soul mate

Mentally healthy college students seek to have a soul mate in specific friendships or romantic partnerships. Nine interviewees suggest that mentally healthy college students possess the ability and quality to communicate and empathize with others on a deep spiritual level and form corresponding friendships or romantic relationships. Whether in friendship or romantic relationships, mentally healthy college students have the correct attitude toward interaction, as F8 said, “ For example, Zeng Gong and Wang Anshi (both politicians of the Northern Song Dynasty), …… They become good friends for life not based on interests, but on their appreciation of each other, and the same values, which I think mental health of college students should always be ” (#F8-67).

They emphasize the spiritual level of communication more than pursuing each other’s company. They have a more high-quality and pure relationship, in friendship or romantic relationships. As F6 said: “ ‘The friendship of a noble person is as pure as water.’ (Chuang-Tzu). Put simply, relationships should be genuine and straightforward, free from fame-seeking or ulterior motives; Just like the story of Boya and Ziqi, mentally healthy students might find a companion who truly gets them, connecting on a spiritual and empathetic level…… ” (#F6-38). It is the same with romantic relationships, as M6 mentioned, “ When you read the poem of Su Shi, for example, ‘Ten years parted, one living, one dead; Not thinking; Yet never forgetting; A thousand Li from her lonely grave; I have nowhere to tell my grief……’ The affection between him and his wife is so deep that it is enviable ” (#M6-42).

4） Showing filial respect to parents appropriately

Mentally healthy college students have rational conceptions of filial piety towards their parents and appropriate, respectful behavior. Eleven interviewees believe mentally healthy college students are filial and rational in their interactions with their parents. Mentally healthy college students show filial piety to their parents appropriately. On the one hand, they practice filial piety by accompanying their parents, communicating more with them, caring for them, repaying them, and so on. As F5 mentioned, “ ‘Our bodies—to every hair and bit of skin—are received by us from our parents’ (Xiao Jing). Mentally healthy college students are grateful and respectful, often care for their parents, and spend more time with them ” (#F5-109).

On the other hand, they also have rational thinking rather than unprincipled obedience regarding filial piety’s “cognition” aspect. As one participant said, “ Not just any kind of filial piety, that is, you should have your thinking and judgment…… ” (#F3-105). Another participant said, “ Proper filial piety is an aspect of college students’ mental health, not that they are obedient to their parents. When they disagree with parents, they can communicate more with parents and let themselves be understood ” (#M5-102).

Behavior ability

Behavior ability refers to the ability of an individual to behave appropriately. According to these interviewees, mentally healthy college students have a variety of behavioral abilities, such as adapting to different environments, learning well, and regulating their emotions. This theme directly reflects the Chinese culture: “Those who obey heaven survive, and those who defy heaven perish,” “learn without thinking is reckless, think without learning is dangerous,” and “When joy, anger, sorrow, and happiness are not yet expressed as a response to other things, they are in a state of balance. When they are expressed in words and deeds by the rites, harmony is achieved. “The following three subthemes were identified regarding students’ behavior ability.

(1) Adapting to the environment

Mentally healthy college students can adapt to the environment. Seven interviewees believe that mentally healthy college students can adapt to different environments. Adaptability is reflected on the one hand in the interpersonal aspects (“ There is also the adaptation to the university environment. Mentally healthy college students can integrate into groups and clubs, and actively participate in club activities ”, #F2-16). Also, they can adapt to different environments (“ I think social adaptability is quite important…… I went to work part-time this summer, but I feel that I have just been exposed to it ”, #F9-10). Moreover, they also show adaptability to adversity (“ I think mentally healthy college students also can adapt to adversity…… ”, #M5-70).

(2) Studying diligently and learning well

Mentally healthy college students can learn well. Thirteen interviewees suggest that mentally healthy college students exhibit a positive learning attitude, take ownership of their learning, maintain a continuous learning process, and demonstrate good study habits. They learn earnestly and diligently and have good learning attitudes (“ College students with good mental health will keep learning, have the initiative to learn, down-to-earth. Moreover, if they work by fits and starts (Cao Xueqin: The Dream of Red Mansions), there will not be a good result ”, #F5-64).

They also actively take responsibility for learning. As F10 said, “ Responsibility is fundamental. The primary task for students is studying. One should stay in one’s lane ” (#F10-83). Besides, they are good at learning (“ I think Lu Xun, who gave up medicine to pursue literature, …… has a powerful ability to learn ”, #F9-71). In addition, they study diligently and accumulate knowledge. As M2 mentioned, “ Since I have to prepare for the entrance examination, I have to memorize words and take lessons every day. That is, ‘But unless you pile up little steps, you can never journey a thousand li; unless you pile up tiny streams, you can never make a river or a sea.’ (Hsun-Tzu: Encouraging Learning), …… I realized that what I do daily is important ”, #M2-93).

(3) Being emotionally appropriate and can regulate emotions

Mentally healthy college students can regulate and manage their emotions. Nine interviewees posit that mentally healthy students display emotional appropriateness and stability, promptly and effectively managing their emotions. Emotions are often regarded as the signal light of mental health. Thus, mentally healthy college students are emotionally appropriate and relatively stable, “ A mentally healthy college student should be emotionally stable, …… ‘The master was mild, and yet dignified; majestic, and yet not fierce; respectful, and yet easy’ (The Analects). One should have a suitable emotion in which state ” (#F3-78).

Moreover, when encountering adverse events, they have the ability to regulate their emotions. As one participant mentioned, “ A mentally healthy college student can control his emotions and regulate his emotions ” (#F6-1). At the same time, they can adjust themselves in appropriate and healthy ways in time, “ when he meets some bad things, he can just communicate with others, exercise…… instead of drinking or even hurting himself ” (#F8-10).

Self-cultivation

Self-cultivation refers to the inner quality or state an individual constantly improves or achieves through long-term efforts and cultivation. According to the interviewees, mentally healthy college students advocate the continuous improvement of self-cultivation. They try to possess many excellent qualities of Confucianism, Buddhism, and Taoism and perfect them daily by having clear and objective self-knowledge and constantly reflecting on themselves to improve their cultivation. This is a direct reflection of the Chinese culture of “no end to learning” and “Seeing the virtuous and thinking of the wise, seeing the unwise and introspecting”, and so on. The following four subthemes regarding students’ self-cultivation were identified.

(1) Having an objective, positive perception of oneself and can accept one’s mediocrity

The constant improvement of mentally healthy college students’ self-cultivation first requires a clear perception of oneself. Eleven interviewees believe mentally healthy college students have a positive, comprehensive, and clear understanding of themselves. They know their strengths and weaknesses and can accept their mediocre and weak sides, “ For example, an Olympic weightlifter, he can only lift 50 pounds, but he had to go lift 100 pounds…… A mentally healthy person should clearly understand themselves and do according to one’s abilities… ”, #F8-33). They also have a positive view of themselves, “ ‘All things in their being are good for something’ (Li Bai: Invitation to Wine); one should not think too lightly of themselves when disillusioned. They can certainly play their usefulness in life, cannot improperly belittle oneself ” (#F9-35). Furthermore, they can also accept their mediocrity and weakness, “ I think there is also a significant point, which is to accept their mediocrity gradually…… ” (#F1-8).

(2) Being confident and also modest

The constant improvement of mentally healthy college students’ self-cultivation also requires an objective perception of oneself. Thirteen interviewees believe that mentally healthy college students are confident and able to stick to what they believe is correct while also being modest. According to a participant, mentally healthy college students believe in themselves, “ This point of believing in oneself in Qian Xuesen is probably also what a mentally healthy college student should have…… ”, #M4-128). They are assertive and can stand firm on their ideas (“ When faced with two choices, mentally healthy college students listen to others’ opinions and at the same time stick to their ow n,” #F4-77). At the same time, they are also modest (“ A saying goes that, ‘Modesty helps one go forward, whereas conceit makes one lag.’ In my opinion, mentally healthy students may not be so proud of themselves……”, #F5-36). Furthermore, they are not overly confident or modest (“Both confidence and modesty in a mentally healthy college student are appropriate and balanced, that is, I think it is necessary to be confident but also modest……, ” #F7-109).

(3) Focusing on introspection and contemplation to align with the sages

Mentally healthy college students improve themselves through constant introspection. Ten interviewees believe mentally healthy college students focus on introspection and are strict with themselves. They constantly check the gaps to seek progress and expand their horizon. Specifically, mentally healthy college students often reflect on themselves (“ ‘I daily examine myself on three points……’ (The Analects) which I think reflects the mental health of college students, that is, whether you are doing your best in the team…… ”, F2-35). They are also strict with themselves, “ As the sayings go, ‘You cannot expect a better world without cleaning your room first,’ although Du Fu (a famous poet of the Tang Dynasty) is said to be very talented, if one cannot do small things well, like cleaning the house, he can do nothing else well ” (#M5-52).

Moreover, they make constant progress and look to the virtuous, “ ‘When you see a person of virtue and capability, you should think of emulating and equaling the person; when you see a person of low caliber, you should reflect on your weak points’ (The Analects). Mentally healthy people also constantly learn from the strengths of others and reflect on their weaknesses ” (#M2-34).

(4) Possessing good qualities advocated by Confucianism, Buddhism, and Taoism, which coexist harmoniously

The highest level of self-cultivation for mentally healthy college students is to possess many good qualities of Confucianism, Buddhism, and Taoism, which together become the characteristics of mentally healthy college students. Sixteen interviewees suggest that mentally healthy college students exhibit strong moral characteristics and virtues from Confucianism, Buddhism, and Taoism, all coexisting harmoniously. Mentally healthy college students have the excellent qualities of Taoism, such as being calm and bland, indifferent to fame and fortune, and peaceful and happy. As the participants said, “ This sense of ordinariness, which I think may also be a necessity for mental health…… ” (#F7- 34); “ Mentally healthy college students are calm and relaxed, take the rough with the smooth; they have confidence in themselves and take it easy ” (#M7-35).

Moreover, they have the excellent virtues of Confucianism, such as benevolence, righteousness, rites, wisdom, and good faith. As F3 said, “ Mentally healthy college students must be good in these virtues, like ‘loyalty, filial piety, rites, wisdom, good faith, and courage’…… ” (#F3-90). Another participant mentioned, “ After comparing so many fictional characters, it is hard for me to use words to describe him (Qiao Feng), …… very filial and loyal, very righteous, …… doing things very fairly, … … ”, #M6-59).

Besides, they also obtain the main qualities of Buddhism, such as gratitude and kindness (“ ‘Moral character can be built by accumulating goodness’ (Hsun-Tzu: Encouraging Learning). A mentally healthy college student does good deeds, such as attending activities as a volunteer…… ” #F2-30). As F9 said, “ Also, mentally healthy college students often remember others’ kindness and are grateful, and then be nice to others, as the saying goes, ‘You throw a peach to me, I give you a white jade for friendship.’ (The Book of Songs) ”, #F9 -112).

The study identified five themes and 18 characteristics of mentally healthy college students within Chinese culture. These characteristics are deeply rooted in Chinese traditions, highlighting yin-yang balance and moral cultivation. They related closely to college students’ identity, learning stage, and age. Contrasting with characteristics of other cultural backgrounds, they showcase the impact of Chinese culture on college students, validating and expanding the theory of sociocultural models.

Comparison with previous studies

Firstly, compared to existing research on the characteristics of mentally healthy college students, this study presents novel findings and unique insights. Consistent with other related studies rooted in Chinese culture, both this study and previous research accentuate that the characteristics of mentally healthy college students encompass facets such as self-awareness, interpersonal relationships, emotional regulation, and positive learning traits. For instance, Wang (1992) posited that mentally healthy college students exhibit characteristics focusing on self-awareness, interpersonal adeptness, and emotional regulation [ 32 ]. Similarly, Zeng (2021) described the characteristics of mentally healthy college students, highlighting their emotional state, academic performance, and interpersonal skills [ 33 ].

Some characteristics revealed in our study diverge from those proposed in prior research concerning their specific connotations. Taking emotional regulation as an example, the research of Zeng (2021) and Wang (1992) primarily emphasized affirming positive emotions. They depicted mentally healthy college students as “positively emotional and controllable” or “possess the capacity to coordinate and manage emotions effectively, sustaining a positive mood.” In contrast, the characteristic identified in this study of “being emotionally appropriate and can regulate emotions” not only encompasses positive emotions but also includes negative feelings, emphasizing the timely and moderate expression of both. This directly reflects the Confucian concept of “Zhongyong” (doctrine of the mean) in Chinese culture, which advocates for moderation in all things, whether positive or negative. Therefore, it is evident that college students’ mental health is closely intertwined with the concept of moderation. Individuals can achieve mental health in various aspects by expressing emotions moderately, whether positive or negative.

Furthermore, this study has identified characteristics not previously mentioned by Chinese scholars, such as “showing filial respect to parents appropriately.” Filial piety is a unique social behavior within Chinese culture, embodying a comprehensive and intricate ethical framework [ 58 ]. Chinese society dramatically emphasizes family values, where treating parents well and acknowledging their upbringing is paramount. Therefore, if one is not filial, one cannot be said to be mentally healthy. However, with the evolution of societal norms, the essence of filial piety has transformed. Recent research reveals that contemporary society no longer adheres to traditional interpretations of filial piety solely through obedience to parents [ 59 ]. This shift signifies that mentally healthy college students now approach filial piety differently, manifesting altered perspectives, attitudes, and behaviors toward this concept. In ancient China, departing from one’s hometown to pursue education and personal growth was discouraged, as staying by one’s parents’ side was deemed the epitome of filial piety. As Confucius stated, “While the father and mother are living, do not wander afar” ( The Analects ). However, today, individuals are encouraged to venture afar to contribute meaningfully to their country and society [ 60 ]. As a result, modern manifestations of filial piety among mentally healthy college students involve not just reverence, care, and support for their parents but also underscore the significance of preserving autonomy and independence while fulfilling their familial duties.

Secondly, upon comparing our findings with research from other cultural backgrounds, it becomes apparent that our results diverge significantly from those of Western culture but align closely with research outcomes from Africa and Asia.

In the West, the understanding of mental health emphasizes enhancing personal belonging, satisfaction, and well-being, which is very different from Chinese culture, which emphasizes self-sacrifice and self-elimination [ 61 ]. Although this study was conducted in a qualitative study of a group of college students in very good mental health, a research perspective similar to Maslow’s research on self-actualizers, there were significant differences in the specific characteristics of these healthy individuals in different cultures. In particular, this study did not address the characteristics of self-actualizers noted by Maslow, such as “the mystic experience: the peak experience” and “philosophical, unhostile sense of humor,” which emphasize excellent personal features. The characteristics identified from this study emphasize individuals’ relationships with the country and family. Such as “loving their motherland and identifying with their culture,” “having a sense of responsibility and mission and being willing to dedicate oneself to the country at any time,” and “Showing filial respect to parents appropriately.” These characteristics are the direct expression of Chinese culture in terms of devoting oneself to the country and being filial to parents, which were not found in the results of Maslow’s study.

On the other hand, this study aligns more closely with research findings from African and Asian cultural backgrounds. For example, in the view of caregivers in Africa and Asia, mentally healthy individuals are people who contribute to the community and spend an enjoyable time in groups [ 28 ]. Thus, college students with good mental health can meet precise requirements at different levels: the individual and others, the individual and the family, and the individual and the nation, which is more of a relationship-oriented “big self” [ 62 ].

Thirdly, this research’s findings correspond with certain facets of the 24 character strengths and 6 virtues outlined in positive psychology, yet they also reveal disparities in specific aspects.

With the burgeoning of the positive psychology movement, some researchers have suggested that people with good mental health are not articulated merely as the absence of mental illness but as people who possess positive qualities, such as being highly resilient and well-being [ 63 ]. Seligman and colleagues summarized 6 virtues and 24 character strengths contributing to a good life [ 64 ], which have garnered wide attention. A point of convergence is that some positive psychological qualities emphasized by the characteristics identified in this study align with those highlighted in positive psychology. For instance, the characteristic of “being benevolent and kind” identified in this study emphasizes that mentally healthy college students are compassionate and kind. Similarly, one of the 6 virtues in positive psychology is humanity, which also focuses on kindness.

Nonetheless, notable distinctions exist between this study and the character strengths or virtues proposed by positive psychology. Firstly, in terms of the connotation of similar qualities, there are variations between the two. For example, the quality of “modesty” as a traditional Chinese virtue holds different implications than the Western perspective on “humility.” Modesty in Chinese culture carries much richer connotations than in the West, and core characteristics such as being open-minded, down-to-earth, and striving for improvement are unique to Chinese culture [ 65 ]. Additionally, while positive psychology views humility as an important but standalone character strength, this study found that mentally healthy college students are “being confident and also modest,” with modesty and confidence blending and coexisting harmoniously. This aligns with the encouragement of self-esteem, confidence, and self-improvement among the younger generation in China in recent years [ 66 ]. However, Chinese people still highly value modesty as a virtue while simultaneously emphasizing confidence. These seemingly contradictory qualities of confidence and modesty are valued, reflecting the dynamic balance of “yin and yang” in Chinese culture [ 67 ].

More importantly, this study has uncovered additional positive qualities beyond the 24 character strengths, such as “being inclusive and broad-minded”.These qualities carry strong moral attributes; in other words, possessing these moral qualities is essential for mental health. Confucianism emphasizes social morality, self-cultivation, and the development of a gentleman-like sage personality [ 68 ]. Self-cultivation is the basis for the ethical construction of family and society to perfect the ideal personality of governing the state and pacifying the world. The concept of “sageliness within and kingliness without” underscores this philosophy [ 69 ]. The characteristic “being inclusive and broad-minded” implies that mentally healthy college students exhibit tolerant and open-minded attitudes, embracing the principles of “Harmony, but Not Uniformity” and “The sea admits hundreds of rivers for its capacity to hold”(Chinese idioms) when encountering diverse viewpoints or adversity. Therefore, a mentally healthy college student possesses virtues such as tolerance and open-mindedness, showcasing solid moral values. In essence, college students’ mental health is intertwined with their moral attributes. A mentally healthy individual must embody essential moral qualities, which serve as markers of their overall well-being. Acknowledging the significance of moral virtues in defining and nurturing mental health among college students is crucial.

Validation and extension to the theory of sociocultural models

Firstly, this study validates the theory of sociocultural models. On one hand, this study confirms how culture influences individual psychology as proposed in the theory of sociocultural models. In this study, psychological entities represent the characteristics of mentally healthy college students that guide their thoughts, behaviors, and attitudes. According to the findings of this study, Chinese traditional culture plays a significant role in shaping these characteristics. For example, the patriotic sentiments of important historical figures such as Wen Tianxiang and Yue Fei, as well as the thoughts of traditional Chinese culture such as “Death is not my concern should it benefit the country. How can I pick and choose for my loss or gains?” (Lin Zexu: Two poems for family members on the way to the garrison ”) and “To ordain conscience for Heaven and Earth, to secure life and fortune for the populace, to carry on lost teachings of ancient sages, to build peace for posterity’ (Zhang Zai: Heng Qu Yi Shuo ) are internalized in the characteristics of “Having a sense of responsibility and mission and being willing to dedicate oneself to the country at any time.” The country cultivates college students as pillars of talent, and Confucianism teaches “To be the first in the country to worry about the affairs of the state and the last to enjoy oneself.” (Fan Zhongyan: The Yueyang Tower ). Thus, studying is not only for personal development but also for a sense of responsibility and contribution to the country, which arguably demonstrates the mental health characteristics of the specific group of college students with distinct traditional Chinese cultural connotations. Such findings align with the theory of sociocultural models, emphasizing how people internalize societal culture into their psychological entities to regulate their psychological activities.

On the other hand, this study validates how individual psychology externalizes and promotes the generation of new culture as proposed in the theory of sociocultural models. During China’s modernization, people have realized that only by daring to break through the shackles of existing ideas and exploring innovative development opportunities can the country move forward and develop sustainably. Many people have overcome difficulties and carried out the revolution, construction, and innovation in constructing Chinese socialism. Their love for the country and their sense of mission made them always meet the challenges of national reconstruction with high morale and perseverance [ 70 ]. Especially since the reform and opening-up, people’s minds have been fundamentally liberated, and the spring of scientific and technological progress has been ushered in. Their precious spiritual wealth, such as the characteristic of “daring to criticize, explore, and innovate,” has facilitated the development of new cultures like Chinese revolutionary and socialist cultures in modern times. Such findings align with the theory of sociocultural models, highlighting how group members externalize their psychological entities and transform them into new social cultures through social interactions and co-construction with existing social cultures.

Secondly, this study expands the content of the theory of sociocultural models. Due to a lack of specific pathways depicting the interaction between culture and psychology in the theory of sociocultural models, this study found that the significant carriers of interaction between culture and individual psychology are the spiritual world presented by historical and modern figures mentioned by the interviewees, as well as tangible worlds such as Chinese characters, poetry, martial arts, and art. These aspects of Chinese culture are internalized by college students as part of their psychological entities, guiding their words and actions and also shaping their perception of mental health. Conversely, the psychological entities of college students, such as the emergence of new concepts like “daring to criticize, explore, and innovate” in the construction of a new China, are transformed into emerging cultures, such as Chinese socialist culture through the role of figures like Qian Xuesen and stories as carriers.

Strengths, limitations, and future research

This study possesses several strengths. Firstly, it is the first attempt to systematically explore the characteristics of college students’ mental health entirely based on Chinese culture. The 18 identified characteristics directly convey or reflect aspects of Chinese culture, significantly enriching the comprehension of college students’ mental well-being within the context of Chinese culture. Secondly, the study adheres to the elite principle research paradigm by using elite samples as participants. Consequently, the outcomes comprehensively delineate the characteristics of mentally healthy college students possessing an excellent psychological state rooted in Chinese culture. These findings not only provide an ideal model for nurturing mental health among college students but also engender fresh insights into mental well-being, culminating in a novel benchmark for mental health standards. Thirdly, this study delves into the unique characteristics of mentally healthy college students within Chinese culture from the students’ firsthand experiences. In contrast, prior scholars predominantly offered personal opinions on the characteristics of mentally healthy individuals based on their experiences, lacking the direct perspectives of college students.

This study also has some limitations. As a qualitative study, the nature of this research inherently limits the applications of its conclusions. Focused primarily on college students, generalizing the findings to other groups in China (such as civil servants) may be constrained. Moreover, this study exclusively examines Chinese college students without conducting cross-cultural research. The absence of direct comparative studies fails to highlight variations in mentally healthy characteristics across diverse cultures. For instance, the absence of a comparative study between Chinese and students from other cultures (such as American college students) hindered exploration into the distinctive characteristics and differences of mentally healthy college students from varying cultures. Consequently, extrapolating the results of this study to other cultural contexts also has its limitations. Despite some similarities between Chinese culture and certain cultures in Asia and Africa, direct inferences also have significant constraints.

Furthermore, in terms of understanding culture, there is no conclusive definition of what culture is and what Chinese culture is. Scholars have put forward many understandings and definitions of Chinese culture from different perspectives. Understanding and defining Chinese culture are still in the exploratory stage, which challenges this study. The researcher’s understanding and mastery of existing relevant knowledge are somewhat limited regarding the formation of research results and the depth of analysis and discussion.

Future research could consider the following aspects. Firstly, a comparative study of the characteristics of mentally healthy people in different cultural groups can be conducted. Since individualistic/collectivistic cultures influence Americans and Chinese to be more expressive of private selves/collective selves, and religious cultures also influence individual self-esteem [ 71 ] and form religious selves [ 72 ]. Therefore, some comparative studies with students from different cultural backgrounds can be conducted in the future. For example, a comparative study with three groups of college students from the United States, China, and India can be considered to compare whether there are differences in the characteristics of mentally healthy college students from different cultures. Secondly, some quantitative studies can be considered. For example, future research could refine specific characteristics identified in the study, like “being flexible and dialectical,” for more specific operational definitions and develop a scale to measure the mental health of different groups to validate how these characteristics are manifested in university students or other groups so that more further research could be conducted using this new scale, which may help facilitate replication of the findings. Thirdly, based on continuous learning and accumulation of Chinese culture, future research can do in-depth excavation and exploration of the manifestation and nature of these mental health characteristics. For example, future research could select the characteristics reflecting the culture of filial piety or Zhongyong culture and explore how these cultures change and develop into mental health characteristics with the development of science and technology, the change of social structure, and the collision of Chinese and Western cultures, which may also be of great significance.

Practical implications

The Chinese culture has rich treasure resources and cultivated Chinese character traits, characteristics, and lifestyles. The results of this study show that many attitudes, ideas, and behaviors espoused by Chinese culture are manifestations of mental health. In particular, this study found the characteristics of mentally healthy college students based on Chinese culture, which is culturally applicable and more suitable for promoting the mental health of Chinese college students and can provide essential references and bases for mental health education and clinical practice.

On the one hand, this study can provide an overall theoretical framework for developing mental health courses for college students. Mental health courses are the most important and direct form of mental health education for college students in China, and they are also the primary way to improve the psychological quality of college students. The Ministry of Education requires colleges and universities to offer mandatory public courses on mental health for undergraduate students [ 73 ]. However, current mental health courses for Chinese college students rely mainly on Western mental health-related definitions, theories, and techniques for delivery [ 74 , 75 ]. The five themes and 18 characteristics discovered in this study are systematic, providing a comprehensive and systematic theoretical basis for college students’ mental health courses.

In particular, the five themes discovered in this study—values pursuit, life attitude, interpersonal ideals, behavioral ability, and self-cultivation—can be employed as the central pillars for teaching and setting objectives in a college student mental health course rooted in Chinese culture. Furthermore, the 18 identified characteristics can form each lesson’s fundamental content and learning goals, establishing a comprehensive framework. For instance, the characteristics “being confident and also modest” can be one of the key topics under the theme of “self-cultivation.” By comparing Western views of mental health (focused on confidence) with Chinese beliefs (valuing both confidence and modesty) and blending students’ self-awareness with Chinese cultural insights, the course can delve into the importance of confidence and modesty in Chinese culture. Strategies for cultivating these characteristics can be discussed, shedding light on the unique aspects of mental health development among college students within Chinese cultural contexts.

Secondly, this research offers valuable insights for fostering healthy personalities among college students in psychological counseling methods from the perspective of Chinese culture. On the one hand, this study has a guiding significance for setting goals in psychological counseling. Psychological counseling has traditionally emphasized decreasing negative emotions and boosting positive ones. Nevertheless, this study serves as a reminder for counselors to reassess this counseling objective. Throughout the counseling process, counselors should not only focus on diminishing negative emotions but also be wary of potential complications stemming from excessive positive emotions, stressing the importance of a moderate expression of positive and negative emotions.

On the other hand, the discoveries of this study could serve as a wellspring of inspiration for crafting indigenous approaches to psychological counseling. This research reveals that mentally healthy college students possess the characteristic “possessing good qualities advocated by Confucianism, Buddhism, and Taoism coexist harmoniously.” Within Chinese culture, the symbiotic interplay among Confucianism, Buddhism, and Taoism stands out as a cornerstone [ 76 ], where these philosophies coexist compatibly and mutually influence each other in shaping Chinese characters [ 77 ]. Future scholars might devise counseling methodologies rooted in the principle of harmonious coexistence found within Confucianism, Buddhism, and Taoism, potentially empowering individuals to bolster their mental health through these culturally embedded psychological counseling approaches.

This study explores the characteristics of mental health of college students with good psychological states from the perspective of Chinese culture and finds 18 characteristics, based on which five themes are formed: value pursuit, life attitude, interpersonal ideal, behavior ability, and self-cultivation. The 18 characteristics are typical of Chinese culture or its features, focusing on multi-level relationships with others, parents, and the country. They are also typical of Chinese culture with moral attributes, an emphasis on self-cultivation, a balance of Yin and Yang, and the coexistence of Confucianism, Buddhism, and Taoism. These findings help enrich the research on culture and mental health, highlight the Chinese cultural connotations of mental health, and help form an ideal standard of mental health for college students. Findings can serve as a theoretical foundation for improving the mental well-being of Chinese college students, act as a guiding light for enhancing students’ mental health, and be integrated directly into the mental health curriculum as course content. Mental health education activities based on these findings can help promote, maintain, and cultivate college students’ mental health literacy and healthy personalities to fulfill their potential and become the pillars of the nation.

Availability of data and materials

The datasets for this study are not readily available because they consist of interview data, for which confidentiality cannot be safeguarded. Therefore, the data will not be made available. Requests to access the datasets should be directed to XJ, [email protected].

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Acknowledgements

We appreciate Professor Tianjun Liu from Beijing University of Chinese Medicine, Professor Jianjun Zhu, and Professor Ming Li from Beijing Forestry University for their support in assessing the appropriateness of naming, defining, and classifying the 18 characteristics and five themes. We thank our research team and participants who shared their experiences and made this study possible. We thank Dr. Xiaofang Yao at Federation University Australia and Dr. Lixian Tu at Shanghai University of Political Science and Law for their support throughout the English translation.

This study is support by the BIT Research and Innovation Promoting Project (Grant No. 2022YCXY053).

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MG conducted the interviews, analyzed the data and wrote the manuscript under the guidance of XJ. XJ formulated this study and contributed to editing of the manuscript and critical revisions. WW assisted with the writing and editing of the final manuscript. All authors contributed to manuscript revision, read, and approved the submitted version.

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Guo, M., Jia, X. & Wang, W. How would you describe a mentally healthy college student based on Chinese culture? A qualitative research from the perspective of college students. BMC Psychol 12 , 207 (2024). https://doi.org/10.1186/s40359-024-01689-7

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Although the importance of context in implementation science is not disputed, knowledge about the actual impact of external context variables on implementation processes remains rather fragmented. Current frameworks, models, and studies merely describe macro-level barriers and facilitators, without acknowledging their dynamic character and how they impact and steer implementation. Including organizational theories in implementation frameworks could be a way of tackling this problem. In this study, we therefore investigate how organizational theories can contribute to our understanding of the ways in which external context variables shape implementation processes. We use the implementation process of goal-oriented primary care in Belgium as a case.

A qualitative study using in-depth semi-structured interviews was conducted with actors from a variety of primary care organizations. Data was collected and analyzed with an iterative approach. We assessed the potential of four organizational theories to enrich our understanding of the impact of external context variables on implementation processes. The organizational theories assessed are as follows: institutional theory, resource dependency theory, network theory, and contingency theory. Data analysis was based on a combination of inductive and deductive thematic analysis techniques using NVivo 12.

Institutional theory helps to understand mechanisms that steer and facilitate the implementation of goal-oriented care through regulatory and policy measures. For example, the Flemish government issued policy for facilitating more integrated, person-centered care by means of newly created institutions, incentives, expectations, and other regulatory factors. The three other organizational theories describe both counteracting or reinforcing mechanisms. The financial system hampers interprofessional collaboration, which is key for GOC. Networks between primary care providers and health and/or social care organizations on the one hand facilitate GOC, while on the other hand, technology to support interprofessional collaboration is lacking. Contingent variables such as the aging population and increasing workload and complexity within primary care create circumstances in which GOC is presented as a possible answer.

Conclusions

Insights and propositions that derive from organizational theories can be utilized to expand our knowledge on how external context variables affect implementation processes. These insights can be combined with or integrated into existing implementation frameworks and models to increase their explanatory power.

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Contributions to literature

Knowledge on how external context variables affect implementation processes tends to be rather fragmented. Insights on external context in implementation research often remain limited to merely describing macro-context barriers and facilitators.

Organizational theories contribute to our understanding on the impact of external context to an implementation process by explaining the complex interactions between organizations and their environments.

Findings can be utilized to help explain the mechanism of change in an implementation process and can be combined with or integrated into existing implementation frameworks and models to gain a broader picture on how external context affects implementation processes.

In this study, we integrate organizational theories to provide a profound analysis on how external context influences the implementation of complex interventions. There is a growing recognition that the context in which an intervention takes place highly influences implementation outcomes [ 1 , 2 ]. Despite its importance, researchers are challenged by the lack of a clear definition of context. Most implementation frameworks and models do not define context as such, but describe categories or elements of context, without capturing it as a whole [ 2 , 3 ]. Studies often distinguish between internal and external context: micro- and meso-level internal context variables are specific to a person, team, or organization. Macro-level external context variables consist of variables on a broader, socio-economic and policy level that are beyond one’s control [ 4 ].

Overall, literature provides a rather fragmented and limited perspective on how external context influences the implementation process of a complex intervention. Attempts are made to define, categorize, and conceptualize external context [ 5 , 6 ]. Certain implementation frameworks and models specifically mention external context, such as the conceptual model of evidence-based practice implementation in public service sectors [ 7 ], the Consolidated Framework for Implementation Research [ 8 ], or the i-PARiHS framework [ 9 ]. However, they remain limited to identifying and describing external context variables. Few studies are conducted that specifically point towards the actual impact of macro-level barriers and facilitators [ 10 , 11 , 12 ] but only provide limited insights in how these shape an implementation process. Nonetheless, external contextual variables can be highly disruptive for an organization’s implementation efforts, for example, when fluctuations in funding occur or when new legislation or technology is introduced [ 13 ]. In order to build a more comprehensive view on external context influences, we need an elaborative theoretical perspective.

Organizational theories as a frame of reference

To better understand how the external context affects the implementation process of a primary care intervention, we build upon research of Birken et al. [ 13 ] who demonstrate the explanatory power of organizational theories. Organizational theories can help explain the complex interactions between organizations and their environments [ 13 ], providing understanding on the impact of external context on the mechanism of change in an implementation process. We focus on three of the theories Birken et al. [ 8 ] put forward: institutional theory, resource dependency theory, and contingency theory. We also include network theory in recognition of the importance of interorganizational context and social ties between various actors, especially in primary care settings which are characterized by a multitude of diverse actors (meaning: participants of a process).

These four organizational theories demonstrate the ways in which organizations interact with their external environment in order to sustain and fulfill their core activities. All four of them do this with a different lens. Institutional theory states that an organization will aim to fulfil the expectations, values, or norms that are posed upon them in order to achieve a fit with their environment [ 14 ]. This theory helps to understand the relationships between organizations and actors and the institutional context in which they operate. Institutions can broadly be defined as a set of expectations for social or organizational behavior that can take the form formal structures such as regulatory entities, legislation, or procedures [ 15 ]. Resource dependency theory explains actions and decisions of organizations in terms of their dependence on critical and important resources. It postulates that organizations will respond to their external environment to secure the resources they need to operate [ 16 , 17 ]. This theory helps to gain insight in how fiscal variables can shape the adoption of an innovation. Contingency theory presupposes that an organizations’ effectiveness depends on the congruence between situational factors and organizational characteristics [ 18 ]. External context variables such as social and economic change and pressure can impact the way in which an innovation will be integrated. Lastly, network theory in its broader sense underlines the strength of networks: collaborating in networks can establish an effectiveness in which outcomes are achieved that could not be realized by individual organizations acting independently. Networks are about connecting or sharing information, resources, activities, and competences of three or more organizations aiming to achieve a shared goal or outcome [ 19 , 20 ]. Investigating networks helps to gain understanding of the importance of the interorganizational context and how social ties between organizations affect the implementation process of a complex intervention.

Goal-oriented care in Flanders as a case

In this study, we focus on the implementation of the approach goal-oriented care (GOC) in primary care in Flanders, the Dutch-speaking region in Belgium. Primary care is a highly institutionalized and regulated setting with a high level of professionalism. Healthcare organizations can be viewed as complex adaptive systems that are increasingly interdependent [ 21 ]. The primary care landscape in Flanders is characterized by many primary care providers (PCPs) being either self-employed or working in group practices or community health centers. They are organized and financed at different levels (federal, regional, local). In 2015–2019, a primary care reform was initiated in Flanders in which the region was geographically divided into 60 primary care zones that are governed by care councils. The Flemish Institute of Primary Care was created as a supporting institution aiming to strengthen the collaboration between primary care health and welfare actors. The complex and multisectoral nature of primary care in Flanders forms an interesting setting to gain understanding in how macro-level context variables affect implementation processes.

The concept of GOC implies a paradigm shift [ 22 ] that shifts away from a disease or problem-oriented focus towards a person-centered focus that departs from “what matters to the patient.” Boeykens et al. [ 23 ] state in their concept analysis that GOC could be described as a healthcare approach encompassing a multifaceted, dynamic, and iterative process underpinned by the patient’s context and values. The process is characterized by three stages: goal elicitations, goal setting, and goal evaluation in which patients’ needs and preferences form the common thread. It is an approach in which PCPs and patients collaborate to identify personal life goals and to align care with those goals [ 23 ]. An illustration of how this manifests at individual level can be found in Table 1 . The concept of GOC was incorporated in Flemish policies and included in the primary care reform in 2015–2019. It has gained interest in research and policy as a potential catalyst for integrated care [ 24 ]. As such, the implementation of GOC in Flanders provides an opportunity to investigate the external context of a complex primary care intervention. Our main research question is as follows: what can organizational theories tell us about the influence of external context variables on the implementation process of GOC?

We assess the potential of four organizational theories to enrich our understanding of the impact of external context variables on implementation processes. The organizational theories assessed are as follows: institutional theory, resource dependency theory, network theory, and contingency theory. Qualitative research methods are most suitable to investigate such complex matters, as they can help answer “how” and “why” questions on implementation [ 25 ]. We conducted online, semi-structured in-depth interviews with various primary care actors. These actors all had some level of experience at either meso- or micro-level with GOC implementation efforts.

Sample selection

For our purposive sample, we used the following inclusion criteria: 1) working in a Flemish health/social care context in which initiatives are taken to implement GOC and 2) having at least 6 months of experience. For recruitment, we made an overview of all possible stakeholders that are active in GOC by calling upon the network of the Primary Care Academy (PCA) Footnote 1 . Additionally, a snowballing approach was used in which respondents could refer to other relevant stakeholders at the end of each interview. This leads to respondents with different backgrounds (not only medical) and varying roles, such as being a staff member, project coordinator, or policy maker. We aimed at a maximum variation in the type of organizations which were represented by respondents, such as different governmental institutions and a variety of healthcare/social care organizations. In some cases, paired interviews were conducted [ 26 ] if the respondents were considered complementary in terms of expertise, background, and experience with the topic. An information letter and a request to participate was send to each stakeholder by e-mail. One reminder was sent in case of nonresponse.

Data collection

Interviews were conducted between January and June 2022 by a sociologist trained in qualitative research methods. Interviewing took place online using the software Microsoft Teams and were audio-recorded and transcribed verbatim. A semi-structured interview guide was used, which included (1) an exploration of the concept of GOC and how the respondent relates to this topic, (2) questions on how GOC became a topic of interest and initiatives within the respondent’s setting, and (3) the perceived barriers and facilitators for implementation. An iterative approach was used between data collection and data analysis, meaning that the interview guide underwent minor adjustments based on proceeding insights from earlier interviews in order to get richer data.

Data analysis

All data were thematically analyzed, both inductively and deductively, supported by the software NVivo 12©. For the inductive part, implicit and explicit ideas within the qualitative data were identified and described [ 27 ]. The broader research team, with backgrounds in sociology, medical sciences, and social work, discussed these initial analyses and results. The main researcher then further elaborated this into a broad understanding. This was followed by a deductive part, in which characteristics and perspectives from organizational theories were used as sensitizing concepts, inspired by research from Birken et al. [ 13 ]. This provided a frame of reference and direction, adding interpretive value to our analysis [ 28 ]. These analyses were subject of peer debriefing with our cooperating research team to validate whether these results aligned with their knowledge of GOC processes. This enhances the trustworthiness and credibility of our results [ 29 , 30 ]. Data analysis was done in Dutch, but illustrative quotes were translated into English.

In-depth interviews were performed with n = 23 respondents (see Table 2 ): five interviews were duo interviews, and one interview took place with n = 3 respondents representing one organization. We had n = 6 refusals: n = 3 because of time restraints, n = 1 did not feel sufficiently knowledgeable about the topic, n = 1 changed professional function, and there was n = 1 nonresponse. Respondents had various ways in which they related towards the macro-context: we included actors that formed part of external context (e.g., the Flemish Agency of Care and Health), actors that facilitate and strengthen organizations in the implementation of GOC (e.g., the umbrella organization for community health centers), and actors that actively convey GOC inside and outside their setting (e.g., an autonomous and integral home care service). Interviews lasted between 47 and 72 min. Table 3 gives an overview on the main findings of our deductive analysis with their respective links to the propositions of each of the organizational theories that we applied as a lens.

Institutional theory: laying foundations for a shift towards GOC

For the implementation of GOC in primary care, looking at the data with an institutional theory lens helps us understand the way in which primary care organizations will respond to social structures surrounding them. Institutional theory describes the influence of institutions, which give shape to organizational fields: “organizations that, in the aggregate, constitute a recognized area of institutional life [ 31 ], p. 148. Prevailing institutions within primary care in Flanders can affect how organizations within such organizational fields fulfil their activities. Throughout our interviews, we recognized several dynamics that are being described in institutional theory.

First of all, the changing landscape of primary care in Flanders (see 1.2) was often brought up as a dynamic in which GOC is intertwined with other changes. Respondents mention an overall tendency to reform primary care to becoming more integrated and the ideas of person-centered care becoming more upfront. These expectations in how primary care should be approached seem to affect the organizational field of primary care: “You could tell that in people’s minds they are ready to look into what it actually means to put the patient, the person central. — INT01” Various policy actors are committed to further steer towards these approaches: “the government has called it the direction that we all have to move towards. — INT23” It was part of the foundations for the most recent primary care reform, leading to the creation of demographic primary care zones governed by care councils and the Flemish Institute of Primary Care as supporting institution.

These newly established actors were viewed by our respondents as catalysts of GOC. They pushed towards the aims to depart from local settings and to establish connections between local actors. Overall, respondents emphasized their added value as they are close to the field and they truly connect primary care actors. “They [care councils] have picked up these concepts and have started working on it. At the moment they are truly the incubators and ecosystems, as they would call it in management slang. — INT04” For an innovation such as GOC to be diffused, they are viewed as the ideal actors who can function as a facilitator or conduit. They are uniquely positioned as they are closely in contact with the practice field and can be a top-down conduit for governmental actors but also are able to address the needs from bottom-up. “In this respect, people look at the primary care zones as the ideal partners. […] We can start bringing people together and have that helicopter view: what is it that truly connects you? — INT23” However, some respondents also mentioned their difficult governance structure due to representation of many disciplines and organizations.

Other regulatory factors were mentioned by respondents were other innovations or changes in primary care that were intentionally linked to GOC: e.g., the BelRAI Footnote 2 or Flemish Social Protection Footnote 3 . “The government also provides incentives. For example, family care services will gradually be obliged to work with the BelRAI screener. This way, you actually force them to start taking up GOC. — INT23” For GOC to be embedded in primary care, links with other regulatory requirements can steer PCPs towards GOC. Furthermore, it was sometimes mentioned that an important step would be for the policy level to acknowledge GOC as quality of care and to include the concept in quality standards. This would further formalize and enforce the institutional expectation to go towards person-centered care.

Currently, a challenge on institutional level as viewed by most respondents is that GOC is not or only to a limited extent incorporated in the basic education of most primary care disciplines. This leads to most of PCPs only having a limited understanding of GOC and different disciplines not having a shared language in this matter. “You have these primary health and welfare actors who each have their own approach, history and culture. To bring them together and to align them is challenging. — INT10” The absence of GOC as a topic in basic education is mentioned by various respondents as a current shortcoming in effectively implementing GOC in the wider primary care landscape.

Overall, GOC is viewed as our respondents as a topic that has recently gained a lot interest, both by individual PCPS, organizations, and governmental actors. The Flemish government has laid some foundations to facilitate this change with newly created institutions and incentives. However, other external context variables can interfere in how the concept of GOC is currently being picked up and what challenges arise.

Resource dependency theory: in search for a financial system that accommodates interprofessional collaboration

Another external context variable that affects how GOC can be introduced is the financial system that is at place. To analyze themes that were raised during the interviews with regard to finances, we utilized a resource dependency perspective. This theory presumes that organizations are dependent on financial resources and are seeking ways to ensure their continued functioning [ 16 , 17 ]. To a certain extent, this collides with the assumptions of institutional theory that foregrounds organization’s conformity to institutional pressures [ 32 ]. Resource dependency theory in contrast highlights differentiation of organizations that seek out competitive advantages [ 32 ].

In this context, respondents mention that their interest and willingness to move towards a GOC approach are held back by the current dominant system of pay for performance in the healthcare system. This financial system is experienced as restrictive, as it does not provide any incentive to PCPs for interprofessional collaboration, which is key for GOC. A switch to a flat fee system (in which a fixed fee is charged for each patient) or bundled payment was often mentioned as desirable. PCPs and health/social care organizations working in a context where they are financially rewarded for a trajectory or treatment of a patient in its entirety ensure that there is no tension with their necessity to obtain financial resources, as described in the resource dependency theory. Many of our respondents voice that community health centers are a good example. They cover different healthcare disciplines and operate with a fixed price per enrolled patient, regardless of the number of services for that patient. This promotes setting up preventive and health-promoting actions, which confirms our finding on the relevance of dedicated funding.

At the governmental level, the best way to finance and give incentives is said to be a point of discussion: “For years, we have been arguing about how to finance. Are we going to fund counsel coordination? Or counsel organization? Or care coordination? — INT04” Macro-level respondents do however mention financial incentives that are already in place to stimulate interprofessional collaboration: fees for multidisciplinary consultation being the most prominent. Other examples were given in which certain requirements were set for funding (e.g., Impulseo Footnote 4 , VIPA Footnote 5 ) that stimulate actors or settings in taking steps towards more interprofessional collaboration.

Nowadays, financial incentives to support organizations to engage in GOC tend to be project grants. However, a structural way to finance GOC approaches is currently lacking, according to our respondents. As a consequence, a long-term perspective for organizations is lacking; there is no stable financing and organizations are obliged to focus on projects instead of normalizing GOC in routine practice. According to a resource dependency perspective, the absence of financial incentives for practicing GOC hinders organizations in engaging with the approach, as they are focused on seeking out resources in order to fulfil their core activities.

A network-theory perspective: the importance of connectedness for the diffusion of an innovation

Throughout the interviews, interorganizational contextual elements were often addressed. A network theory lens states that collaborating in networks can lead to outcomes that could not be realized by individual organizations acting independently [ 19 , 20 ]. Networks consist of a set of actors such as PCPs or health/social care organizations along with a set of ties that link them [ 33 ]. These ties can be state-type ties (e.g., role based, cognitive) or event-type ties (e.g., through interactions, transactions). Both type of ties can enable a flow in which information or innovations can pass, as actors interact [ 33 ]. To analyze the implementation process of GOC and how this is diffused through various actors, a network theory perspective can help understand the importance of the connection between actors.

A first observation throughout the interviews in which we notice the importance of networks was in the mentioning of local initiatives that already existed before the creation of the primary care zones/care councils. In the area around Ghent, local multidisciplinary networks already organized community meetings, bringing together different PCPs on overarching topics relating to long-term care for patients with chronic conditions. These regions have a tradition of collaboration and connectedness of PCPs, which respondents mention to be highly valuable: “This ensures that we are more decisive, speaking from one voice with regards to what we want to stand for. — INT23” Respondents voice that the existence of such local networks has had a positive effect on the diffusion of ideas such as GOC, as trust between different actors was already established.

Further mentioning of the importance of networks could be found in respondents acknowledging one of the presumptions of network theory: working collaboratively towards a specific objective leads to outcomes that cannot be realized independently. This is especially true for GOC, an approach that in essence requires different disciplines to work together: “When only one GP, nurse or social worker starts working on it, it makes no sense. Everyone who is involved with that person needs to be on board. Actually, you need to finetune teams surrounding a person — INT11.” This is why several policy-level respondents mentioned that emphasis was placed on organizing GOC initiatives in a neighborhood-oriented way, in which accessible, inclusive care is aimed at by strengthening social cohesion. This way, different types of PCPs got to know each other through these sessions an GOC and would start to get aligned on what it means to provide GOC. However, in particular, self-employed PCPs are hard to reach. According to our respondents, occupational groups and care councils are suitable actors to engage these self-employed PCPs, but they are not always much involved in such a network .

To better connect PCPs and health/social care organizations, the absence of connectedness through the technological landscape is also mentioned. Current technological systems and platforms for documenting patient information do not allow for aligning and sharing between disciplines. In Flanders, there is a history of each discipline developing its own software, which lacks centralization or unification: “For years, they have decided to just leave it to the market, in such a way that you ended up with a proliferation of software, each discipline having its own package. — INT06” Most of the respondents mentioning this were aware that Flanders government is currently working on a unified digital care and support platform and were optimistic about its development.

Contingency theory: how environmental pressure can be a trigger for change

Our interviews were conducted during a rather dynamic and unique period of time in which the impact of social change and pressure was clearly visible: the Flemish primary care reform was ongoing which leads to the creation of care councils and VIVEL (see 3.1.1), and the COVID crisis impacted the functioning of these and other primary care actors. These observed effects of societal changes are reminiscent of the assumptions that are made in contingency theory. In essence, contingency theory presupposes that “organizational effectiveness results from fitting characteristics of the organization, such as its structure, to contingencies that reflect the situation of the organization [ 34 ], p. 1.” When it comes to the effects of the primary care reform and the COVID crisis, there were several mentions on how primary care actors reorganized their activities to adapt to these circumstances. Representatives of care councils/primary care zones whom we interviewed underlined that they were just at the point where they could again engage with their original action plans, not having to take up so many COVID-related tasks anymore. On the one hand, the COVID crisis had however forced them to immediately become functional and has also contributed that various primary care actors quickly got to know them. On the other hand, the COVID crisis has also kept them from their core activities for a while. On top of that, the crisis has also triggered a change the overall view towards data sharing. Some respondents mention a rather protectionist approach towards data sharing, while data sharing has become more normalized during the COVID crisis. This discussion was also relevant for the creation of a unified shared patient record in terms of documenting and sharing patient goals.

Other societal factors that were mentioned having an impact on the uptake of GOC are the demographic composition of a certain area. It was suggested that areas that are characterized by a patient population with more chronic care needs will be more likely to steer towards GOC as a way of coping with these complex cases. “You always have these GPs who blow it away immediately and question whether this is truly necessary. They will only become receptive to this when they experience needs for which GOC can be a solution — INT11.” On a macro-level, several respondents have mentioned how a driver for change is to have the necessity for change becoming very tangible. As PCPs are confronted with increasing numbers of patients with complex, chronic needs and their work becomes more demanding, the need for change becomes more acute. This finding is in line with what contingency theory underlines: changes in contingency (e.g., the population that is increasingly characterized by aging and multimorbidity) are an impetus for change for health/social care organizations to resolve this by adopting a structure that better fits the current environmental characteristics [ 34 ].

Our research demonstrates the applicability of organizational theories to help explain the impact that macro-level context variables have on an implementation process. These insights can be integrated into existing implementation frameworks and models to add the explanatory power of macro-level context variables, which is to date often neglected. The organizational theories demonstrate the ways in which organizations interact with their external environment in order to sustain and fulfill their core activities. As demonstrated in Fig. 1 , institutional theory largely explains how social expectations in the form of institutions lead towards the adoption or implementation of innovation, such as GOC. However, other organizational theories demonstrate how other macro-context elements on different areas can either strengthen or hamper the implementation process.

How organizational theories can help explain the way in which macro-level context variables affect implementation of an intervention

Departing from the mechanisms that are postulated by institutional theory, we observed that the shift towards GOC is part of a larger Flemish primary care reform in which and new institutions have been established and polices have been drawn up to go towards more integrated, person-centered care. To achieve this, governmental actors have placed emphasis on socialization of care, the local context, and establishing ties between organizations in order to become more complementary in providing primary health care [ 35 ]. With various initiatives surrounding this aim, the Flemish government is steering towards GOC. This is reminiscent of the mechanisms that are posed within institutional theory: organizations adapt to prevailing norms and expectations and mimic behaviors that are surrounding them [ 15 , 36 ].

Throughout our data, we came across concrete examples of how institutionalization takes place. DiMaggio and Powell [ 31 ] describe the subsequent process of isomorphism: organizations start to resemble each other as they are conforming to their institutional environment. A first mechanism through which this change occurs is coercive isomorphism and is clearly noticeable in our data. This type of isomorphism results from both formal and informal pressure coming from organizations from which a dependency relationship exists and from cultural expectations in the society [ 31 ]. Person-centered, GOC care is both formally propagated by governmental institutions and procedures and informally expected by current social tendencies. Care councils within primary care zones explicitly propagate and disseminate ideas and approaches that are desirable on policy level. Another form of isomorphism is professional isomorphism and relates to our finding that incorporation of GOC in basic education is currently lacking. The presumptions of professional isomorphism back up the importance of this: values, norms, and ideas that are developed during education are bound to find entrance within organizations as professionals start operating along these views.

Although many observations in our data back up the assumptions of institutional theory, it should be noticed that new initiatives such as the promotion of person-centered care and GOC can collide with earlier policy trends. Martens et al. [ 12 ] have examined the Belgian policy process relating three integrated care projects and concluded that although there is a strong support for a change towards a more patient-centered system, the current provider-driven system and institutional design complicate this objective. Furthermore, institutional theory tends to simplify actors as passive adopters of institutional norms and expectations and overlook the human agency and sensemaking that come with it [ 37 ]. For GOC, it is particularly true that PCPs will actively have to seek out their own style and fit the approach in their own way of working. Moreover, GOC was not just addressed as a governmental expectation but for many PCPs something they inherently stood behind.

Resources dependency theory poses that organizations are dependent on critical resources and adapt their way of working in response to those resources [ 17 ]. From our findings, it seems that the current financial system does not promote GOC, meaning that the mechanisms that are put forward in resources dependency theory are not set in motion. A macro-level analysis of barriers and facilitators in the implementation of integrated care in Belgium by Danhieux et al. [ 10 ] also points towards the financial system and data sharing as two of the main contextual determinants that affect implementation.

Throughout our data, the importance of a network approach was frequently mentioned. Interprofessional collaboration came forward as a prerequisite to make GOC happen, as well as active commitment on different levels. Burns, Nembhard, and Shortell [ 38 ] argue that research efforts on implementing person-centered, integrated care should have more focus on the use of social networks to study relational coordination. In terms of interprofessional collaboration, to date, Belgium has a limited tradition of working team-based with different disciplines [ 35 ]. However, when it comes to strengthening a cohesive primary care network, the recently established care councils have become an important facilitator. As a network governance structure, they resemble mostly a Network Administrative Organization (NAO): a separate, centralized administrative entity that is externally governed and not another member providing its own services [ 19 ]. According to Provan and Kenis [ 19 ], this type of governance form is most effective in a rather dense network with many participants, when the goal consensus is moderately high, characteristics that are indeed representative for the Flemish primary care landscape. This strengthens our observation that care councils have favorable characteristics and are well-positioned to facilitate the interorganizational context to implement GOC.

Lastly, the presumptions within contingency theory became apparent as respondents talked about how the need for change needs to become tangible for PCPs and organizations to take action, as they are increasingly faced with a shortage of time and means and more complex patient profiles. Furthermore, De Maeseneer [ 39 ] affirms our findings that the COVID-19 crisis could be employed as an opportunity to strengthen primary health care, as health becomes prioritized and its functioning becomes re-evaluated. Overall, contingency theory can help gain insight in how and why certain policy trends or decisions are made. A study of Bruns et al. [ 40 ] found that modifiable external context variables such as interagency collaboration were predictive for policy support for intervention adoption, while unmodifiable external context variable such as socio-economic composition of a region was more predictive for fiscal investments that are made.

Strengths and limitations

This study contributes to our overall understanding of implementation processes by looking into real-life implementation efforts for GOC in Flanders. It goes beyond a mere description of external context variables that affect implementation processes but aims to grasp which and how external context variables influence implementation processes. A variety of respondents from different organizations, with different backgrounds and perspectives, were interviewed, and results were analyzed by researchers with backgrounds in sociology, social work, and medical sciences. Results can not only be applied to further develop sustainable implementation plans for GOC but also enhance our understanding of how the external context influences and shapes implementation processes. As most research on contextual variables in implementation processes has until now mainly focused on internal context variables, knowledge on external context variables contributes to gaining a bigger picture of the mechanism of change.

However, this study is limited to the Flemish landscape, and external context variables and their dynamics might differ from other regions or countries. Furthermore, our study has examined and described how macro-level context variables affect the overall implementation processes of GOC. Further research is needed on the link between outer and inner contexts during implementation and sustainment, as explored by Lengninck-Hall et al. [ 41 ]. Another important consideration is that our sample only includes the “believers” in GOC and those who are already taking steps towards its implementation. It is possible that PCPs themselves or other relevant actors who are more skeptical about GOC have a different view on the policy and organizational processes that we explored. Furthermore, data triangulations in which this data is complemented with document analysis could have expanded our understanding and verified subjective perceptions of respondents.

Insights and propositions that derive from organizational theories can be utilized to expand our knowledge on how external context variables affect implementation processes. Our research demonstrates that the implementation of GOC in Flanders is steered and facilitated by regulatory and policy variables, which sets in motion mechanisms that are described in institutional theory. However, other external context variables interact with the implementation process and can further facilitate or hinder the overall implementation process. Assumptions and mechanisms explained within resource dependency theory, network theory, and contingency theory contribute to our understanding on how fiscal, technological, socio-economic, and interorganizational context variables affect an implementation process.

Availability of data and materials

The datasets generated and/or analyzed during the current study are not publicly available due to confidentiality guaranteed to participants but are available from the corresponding author on reasonable request.

The Primary Care Academy (PCA) is a research and teaching network of four Flemish universities, six university colleges, the White and Yellow Cross (an organization for home nursing), and patient representatives that have included GOC as one of their main research domains.

BelRAI, the Belgian implementation of the interRAI assessment tools; these are scientific, internationally validated instruments enabling an assessment of social, psychological, and physical needs and possibilities of individuals in different care settings. The data follows the person and is shared between care professionals and care organizations.

The Flemish Social Protection is a mandatory insurance established by the Flemish government to provide a range of concessions to individuals with long-term care and support needs due to illness or disability.

Impulseo, financial support for general practitioners who start an individual practice or join a group practice

VIPA, grants for the realization of sustainable, accessible, and affordable healthcare infrastructure

Abbreviations

Goal-oriented care

Primary care provider

Primary Care Academy

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Acknowledgements

We are grateful for the partnership with the Primary Care Academy (academie-eerstelijn.be) and want to thank the King Baudouin Foundation and Fund Daniël De Coninck for the opportunity they offer us for conducting research and have impact on the primary care of Flanders, Belgium. The consortium of the Primary Care Academy consists of the following: lead author: Roy Remmen—[email protected]—Department of Primary Care and Interdisciplinary Care, Faculty of Medicine and Health Sciences, University of Antwerp, Antwerp, Belgium; Emily Verté—Department of Primary Care and Interdisciplinary Care, Faculty of Medicine and Health Sciences, University of Antwerp, Antwerp, Belgium, and Department of Family Medicine and Chronic Care, Faculty of Medicine and Pharmacy, Vrije Universiteit Brussel, Brussel, Belgium; Muhammed Mustafa Sirimsi—Centre for Research and Innovation in Care, Faculty of Medicine and Health Sciences, University of Antwerp, Antwerp, Belgium; Peter Van Bogaert—Workforce Management and Outcomes Research in Care, Faculty of Medicine and Health Sciences, University of Antwerp, Belgium; Hans De Loof—Laboratory of Physio-Pharmacology, Faculty of Pharmaceutical Biomedical and Veterinary Sciences, University of Antwerp, Belgium; Kris Van den Broeck—Department of Primary Care and Interdisciplinary Care, Faculty of Medicine and Health Sciences, University of Antwerp, Antwerp, Belgium; Sibyl Anthierens—Department of Primary Care and Interdisciplinary Care, Faculty of Medicine and Health Sciences, University of Antwerp, Antwerp, Belgium; Ine Huybrechts—Department of Primary Care and Interdisciplinary Care, Faculty of Medicine and Health Sciences, University of Antwerp, Antwerp, Belgium; Peter Raeymaeckers—Department of Sociology, Faculty of Social Sciences, University of Antwerp, Belgium; Veerle Bufel—Department of Sociology, Centre for Population, Family and Health, Faculty of Social Sciences, University of Antwerp, Belgium; Dirk Devroey—Department of Family Medicine and Chronic Care, Faculty of Medicine and Pharmacy, Vrije Universiteit Brussel, Brussel; Bert Aertgeerts—Academic Centre for General Practice, Faculty of Medicine, KU Leuven, Leuven, and Department of Public Health and Primary Care, Faculty of Medicine, KU Leuven, Leuven; Birgitte Schoenmakers—Department of Public Health and Primary Care, Faculty of Medicine, KU Leuven, Leuven, Belgium; Lotte Timmermans—Department of Public Health and Primary Care, Faculty of Medicine, KU Leuven, Leuven, Belgium; Veerle Foulon—Department of Pharmaceutical and Pharmacological Sciences, Faculty Pharmaceutical Sciences, KU Leuven, Leuven, Belgium; Anja Declercq—LUCAS-Centre for Care Research and Consultancy, Faculty of Social Sciences, KU Leuven, Leuven, Belgium; Dominique Van de Velde, Department of Rehabilitation Sciences, Occupational Therapy, Faculty of Medicine and Health Sciences, University of Ghent, Belgium, and Department of Occupational Therapy, Artevelde University of Applied Sciences, Ghent, Belgium; Pauline Boeckxstaens—Department of Public Health and Primary Care, Faculty of Medicine and Health Sciences, University of Ghent, Belgium; An De Sutter—Department of Public Health and Primary Care, Faculty of Medicine and Health Sciences, University of Ghent, Belgium; Patricia De Vriendt—Department of Rehabilitation Sciences, Occupational Therapy, Faculty of Medicine and Health Sciences, University of Ghent, Belgium, and Frailty in Ageing (FRIA) Research Group, Department of Gerontology and Mental Health and Wellbeing (MENT) Research Group, Faculty of Medicine and Pharmacy, Vrije Universiteit, Brussels, Belgium, and Department of Occupational Therapy, Artevelde University of Applied Sciences, Ghent, Belgium; Lies Lahousse—Department of Bioanalysis, Faculty of Pharmaceutical Sciences, Ghent University, Ghent, Belgium; Peter Pype—Department of Public Health and Primary Care, Faculty of Medicine and Health Sciences, University of Ghent, Belgium, End-of-Life Care Research Group, Faculty of Medicine and Health Sciences, Vrije Universiteit Brussel and Ghent University, Ghent, Belgium; Dagje Boeykens—Department of Rehabilitation Sciences, Occupational Therapy, Faculty of Medicine and Health Sciences, University of Ghent, Belgium, and Department of Public Health and Primary Care, Faculty of Medicine and Health Sciences, University of Ghent, Belgium; Ann Van Hecke—Department of Public Health and Primary Care, Faculty of Medicine and Health Sciences, University of Ghent, Belgium, University Centre of Nursing and Midwifery, Faculty of Medicine and Health Sciences, University of Ghent, Belgium; Peter Decat—Department of Public Health and Primary Care, Faculty of Medicine and Health Sciences, University of Ghent, Belgium; Rudi Roose—Department of Social Work and Social Pedagogy, Faculty of Psychology and Educational Sciences, University Ghent, Belgium; Sandra Martin—Expertise Centre Health Innovation, University College Leuven-Limburg, Leuven, Belgium; Erica Rutten—Expertise Centre Health Innovation, University College Leuven-Limburg, Leuven, Belgium; Sam Pless—Expertise Centre Health Innovation, University College Leuven-Limburg, Leuven, Belgium; Anouk Tuinstra—Expertise Centre Health Innovation, University College Leuven-Limburg, Leuven, Belgium; Vanessa Gauwe—Department of Occupational Therapy, Artevelde University of Applied Sciences, Ghent, Belgium; Didier ReynaertE-QUAL, University College of Applied Sciences Ghent, Ghent, Belgium; Leen Van Landschoot—Department of Nursing, University of Applied Sciences Ghent, Ghent, Belgium; Maja Lopez Hartmann—Department of Welfare and Health, Karel de Grote University of Applied Sciences and Arts, Antwerp, Belgium; Tony Claeys—LiveLab, VIVES University of Applied Sciences, Kortrijk, Belgium; Hilde Vandenhoudt—LiCalab, Thomas University of Applied Sciences, Turnhout, Belgium; Kristel De Vliegher—Department of Nursing–Homecare, White-Yellow Cross, Brussels, Belgium; and Susanne Op de Beeck—Flemish Patient Platform, Heverlee, Belgium.

This research was funded by fund Daniël De Coninck, King Baudouin Foundation, Belgium. The funder had no involvement in this study. Grant number: 2019-J5170820-211,588.

Author information

Peter Raeymaeckers and Sibyl Anthierens have contributed equally to this work and share senior last authorship.

Authors and Affiliations

Department of Family Medicine and Population Health, University of Antwerp, Doornstraat 331, 2610, Antwerp, Belgium

Ine Huybrechts, Emily Verté & Sibyl Anthierens

Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel, Laarbeeklaan 103, 1090, Jette/Brussels, Belgium

Ine Huybrechts & Emily Verté

LUCAS — Centre for Care Research and Consultancy, KU Leuven, Minderbroedersstraat 8/5310, 3000, Leuven, Belgium

Anja Declercq

Center for Sociological Research, Faculty of Social Sciences, KU Leuven, Parkstraat 45/3601, 3000, Leuven, Belgium

Department of Social Work, University of Antwerp, St-Jacobstraat 2, 2000, Antwerp, Belgium

Peter Raeymaeckers

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, Emily Verté
, Muhammed Mustafa Sirimsi
, Peter Van Bogaert
, Hans De Loof
, Kris Van den Broeck
, Sibyl Anthierens
, Ine Huybrechts
, Peter Raeymaeckers
, Veerle Bufel
, Dirk Devroey
, Bert Aertgeerts
, Birgitte Schoenmakers
, Lotte Timmermans
, Veerle Foulon
, Anja Declerq
, Dominique Van de Velde
, Pauline Boeckxstaens
, An De Sutter
, Patricia De Vriendt
, Lies Lahousse
, Peter Pype
, Dagje Boeykens
, Ann Van Hecke
, Peter Decat
, Rudi Roose
, Sandra Martin
, Erica Rutten
, Sam Pless
, Anouk Tuinstra
, Vanessa Gauwe
, Leen Van Landschoot
, Maja Lopez Hartmann
, Tony Claeys
, Hilde Vandenhoudt
, Kristel De Vliegher
& Susanne Op de Beeck

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IH wrote the main manuscript text. AD, EV, PR, and SA contributed to the different steps of the making of this manuscript. All authors reviewed the manuscript.

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Correspondence to Ine Huybrechts .

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Huybrechts, I., Declercq, A., Verté, E. et al. How does the external context affect an implementation processes? A qualitative study investigating the impact of macro-level variables on the implementation of goal-oriented primary care. Implementation Sci 19 , 32 (2024). https://doi.org/10.1186/s13012-024-01360-0

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Facilitators and barriers for lifestyle change in people with prediabetes: a meta-synthesis of qualitative studies

Gyri Skoglund 1 ,
Birgitta Blakstad Nilsson 1 , 2 ,
Cecilie Fromholt Olsen 1 ,
Astrid Bergland 1 &
Gunvor Hilde 1

BMC Public Health volume 22 , Article number: 553 ( 2022 ) Cite this article

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The increasing prevalence of type 2 diabetes worldwide is a major global public health concern. Prediabetes is a reversible condition and is seen as the critical phase for the prevention of type 2 diabetes. The aim of this study is to identify and synthesize current evidence on the perceived barriers and facilitators of lifestyle change among people with prediabetes in terms of both initial change and lifestyle change maintenance.

A systematic literature search in six bibliographic databases was conducted in April 2021. Potential studies were assessed for eligibility based on pre-set criteria. Quality appraisal was done on the included studies, and the thematic synthesis approach was applied to synthesize and analyse the data from the included studies.

Twenty primary studies were included, containing the experiences of 552 individuals. Thirteen studies reported participants perceived facilitators and barriers of lifestyle change when taking part in community-based lifestyle intervention programs, while seven studies reported on perceived facilitators and barriers of lifestyle change through consultations with health care professionals (no intervention involved).

Three analytical themes illuminating perceived barriers and facilitators for lifestyle change were identified: 1) the individual’s evaluation of the importance of initiating lifestyle change , 2) the second theme was strategies and coping mechanisms for maintaining lifestyle changes and 3) the last theme was the significance of supportive relations and environments in initiating and maintaining lifestyle change .

Awareness of prediabetes and the perception of its related risks affects the motivation for lifestyle change in people at risk of type 2 diabetes; but this does not necessarily lead to lifestyle changes. Facilitators and barriers of lifestyle change are found to be in a complex interplay within multiple ecological levels, including the interpersonal, intrapersonal, environmental and policy level. An integrated understanding and analysis of the perceived barriers and facilitators of lifestyle change might inform people with prediabetes, healthcare professionals, and policy makers in terms of the need for psychological, social, and environmental support for this population.

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Type 2 diabetes represents a significant global health burden, with great impact on individuals, families, and societies. The prevalence of type 2 diabetes is increasing worldwide. Reports estimate that 578 million people will have diabetes in 2030, and the number will increase by 51% (700 million) in 2045 without urgent and sufficient action [ 1 ]. Considering the growing epidemic of diabetes and its complications, the increasing prevalence of prediabetes is a major global public health concern [ 2 ]. The term prediabetes is used to identify those individuals who are at risk of future diabetes and it is also associated with an increased cardiometabolic risk [ 2 ]. Prediabetes is a condition characterized by elevated blood glucose levels, below the threshold limit for type 2 diabetes but above normal levels, and it is estimated that 70% of individuals with prediabetes will eventually develop diabetes [ 2 , 3 ]. Prediabetes is seen as the critical phase for prevention, as the patients’ condition at this stage is reversible and could therefore serve as a window of opportunity to combat type 2 diabetes [ 3 ].

The risk of developing prediabetes increases with being overweight, living a sedentary lifestyle, age, and having a family history of diabetes [ 4 ]. Lifestyle changes aiming for healthy behaviour in terms of healthy diet, regular physical activity, and maintaining a healthy body weight are the cornerstones of prevention or the delayed onset of type 2 diabetes [ 4 , 5 ]. Weight reduction is shown to be the single-most important factor in reducing diabetes incidence: for every kilogram of weight loss, diabetes incidence has been reduced by 16 percent [ 6 ]. Several studies have shown the efficacy of lifestyle intervention with regards to diabetes prevention, with a relative risk reduction of 36–54% in those with prediabetes [ 7 ]. The positive outcomes of lifestyle changes have been observed in diverse populations [ 7 , 8 ], and diabetes prevention has therefore become a key priority for many nations, forming the basis of many national and international practice guidelines [ 9 , 10 , 11 ]. Although research has shown that lifestyle intervention programs are effective [ 7 , 8 , 12 , 13 ], improvements over the long term have been shown to deteriorate, highlighting challenges with long-term adherence and the maintenance of lifestyle changes [ 5 ]. A systematic review of obesity-related lifestyle change interventions, has shown that health behaviours that are initiated and regulated via autonomous motivation are more likely to be maintained over time through autonomous motivation, self-efficacy, and self-regulation skills [ 14 ].

Theoretical framework

In addition to previous research, the theoretical understanding of lifestyle and behavior change is important. A systematic review by Kwasnicka et al. [ 15 ] identified and synthesized 100 current theoretical explanations for behavioral change and maintenance. The review stated that there are distinct patterns of theoretical explanation for initial change and change maintenance and they highlighted the differential nature and role of five overarching, interconnected themes: maintenance motives, self-regulation, resources (psychological and physical), habits, and environmental and social influences. The individual’s motivation is crucial for behaviour change and maintenance, and motives that initiate change may differ from those maintaining change [ 15 ]. Approaches to initiate behaviour change can include motivation in the form of external pressure or control or the positive use of incentives or rewards, but these approaches are often insufficient in order to enhance maintenance of lifestyle change [ 16 ].

The ecological model

In addition to the theoretical explanations of Kwasnicka et al. [ 15 ] the ecological model can be a helpful framework in understanding the facilitators and barriers of lifestyle change in people with prediabetes in a larger context, and within a comprehensive understanding of the multiple determinants of health behaviours [ 17 ]. Health behaviours are dynamic, varying over individual’s lifespans, across settings, and over time [ 18 ], and the complex interplay of facilitators and barriers for healthy behaviours make lifestyle changes challenging to perform [ 19 , 20 ]. According to ecological models of health there are multiple levels that influence on health behaviour and these are the intrapersonal, interpersonal, environmental, and societal level [ 21 ] and the barriers and facilitators for healthy behaviours constantly interact across all these levels [ 17 ]. In addition to the individual motivation and skills for lifestyle change, the ecological perspective further addresses the environmental aspect in understanding the facilitators and barriers in play, and how they impact on lifestyle change and maintenance [ 21 ].

In a review of qualitative studies by Kelly et al. [ 22 ] on the facilitators and barriers for healthy behaviours in midlife (40–64 years), they found that examples of consistent barriers included entrenched attitudes and behaviours, a lack of knowledge, a lack of time, lack of access to transport to facilities and resources, restrictions in the physical environment, and financial costs. The facilitators of healthy behaviour included enjoyment, health benefits, social support, and clear messages. Among the included qualitative studies, however, there were none specifically addressing those with prediabetes.

Former research has found that people who were aware of their prediabetes status were more likely to report a perceived threat of developing diabetes, but they did not report increased engagement in health behaviours [ 23 , 24 , 25 ]. This indicates the need to better understand what characterizes the facilitators and barriers for lifestyle change and maintenance in people with prediabetes, and by identifying this, research on lifestyle change and the implementation of health interventions can be optimally tailored and effective.

Aim of the meta-synthesis

To our knowledge, no previous meta-syntheses examining perceived barriers and facilitators of lifestyle change among people at risk of developing type 2 diabetes have been performed. Hence, the current study aimed to identify and synthesize current qualitative evidence on facilitators and barriers of initial lifestyle change and maintenance based on the experiences of people with prediabetes.

Meta-synthesis, or qualitative evidence synthesis, is the synthesis of primary research studies that relate to a specific topic in order to arrive at a new or enhanced understanding of a specific phenomenon being explored [ 26 ]. One approach to the synthesis of the findings of qualitative research is thematic synthesis as described by Thomas and Harden [ 27 ]. This method combines approaches from both meta-ethnography and grounded theory and was originally developed to guide review of intervention needs, appropriateness, and effectiveness [ 26 , 28 ]. The approach of thematic synthesis is based on the method of thematic analysis used in primary qualitative research, however thematic synthesis enables new insights, interpretations and theories to be developed that has not been seen in the primary studies [ 29 ]. This meta-synthesis was prospectively registered with the International Prospective Register of Systematic Reviews (PROSPERO) (ID: CRD42020180051). We followed the Enhancing Transparency of Reporting the Synthesis of Qualitative Research (ENTREQ) framework [ 30 ].

Search strategy

Systematic comprehensive literature searches were conducted in six bibliographical databases: Medline, Embase PsychInfo, CINAHL, Web of Science, and Cochrane. This choice of databases is in line with suggestions presented in the systematic review on optimal database combinations for literature searches in systematic reviews [ 31 ]. The searches were done by the first author (GS) with close assistance from a health research librarian. The search strategy aimed to cover primary studies addressing the study population of interest, phenomena of interest, and setting of interest; we limited the search to qualitative studies (see Additional file 1 ). The literature search was initially developed in Medline and afterwards translated to the other databases’ search syntax with both text words and adapted thesaurus terms. We also screened the reference lists of the included studies and related systematic reviews to identify further papers. Non-English studies were excluded to prevent cultural and linguistic bias in translations, and there was no publication year limit. The review includes data for studies identified in searches up to April 21st, 2021.

Selection criteria

The primary studies were selected according to the study population, phenomenon of interest, setting and study design. An explicit description of criteria for inclusion and exclusion is presented in Table 1 . The phenomenon of interest of this meta-synthesis was facilitators and barriers to lifestyle change and maintenance in people with prediabetes. When selecting the primary studies, we presumed that the facilitators and barriers could be identified from the data in the studies, but it did not necessarily have to be explicitly mentioned. The primary studies included according to the setting criteria, involved several studies where experiences from participation in a structured lifestyle intervention program were reported. The lifestyle interventions described in these studies mainly focused on physical activity and dietary change and weight loss.

One researcher (GS) screened all titles and abstracts retrieved from the literature search results, excluding studies that did not meet the inclusion criteria. The full texts of potentially relevant articles were then screened independently by two authors in groups of pairs (GS and AB, GS and GH, GS and BBN), and additional information was sought from the authors of the full text articles where necessary. If consensus was not reached between the two researchers, a third reviewer was consulted.

Quality appraisal

Two authors in groups of pairs (GS and AB, GS and GH, GS and BBN) conducted a quality assessment of the included studies independently according to the Critical Appraisal Skills Program (CASP) checklist for qualitative research [ 33 ]. The checklist of ten questions allowed for the systematic appraisal of the qualitative research evidence included in our review (Table 2 ). The checklist guides the reviewer when assessing the validity, result and relevance of each study. After this initial independent assessment, the results of the appraisal were discussed, and a third reviewer was consulted to resolve any disagreements. There was an agreement that no studies were to be excluded based on the quality appraisal. However, an assessment of methodological quality would provide transparency and understanding of the relative strength and weaknesses of the body of evidence included [ 29 ].

Data extraction and synthesis

The data extracted from the primary studies included all the text in the studies’ results chapters, including participant quotations. The extracted text was entered verbatim into NVivo Pro 12 (NVivo qualitative data analysis software; Melbourne, Australia: QSR International Pty Ltd., 2018). Each study was read several times to ensure that all the extracted text was related to the perspectives and experiences of people with prediabetes.

We used the thematic synthesis approach by Thomas and Harden [ 27 ], and this involved three main stages:

1) Line-by-line coding of the findings of the primary studies:

Two independent reviewers performed an inductive line-by-line coding of the extracted material. New codes were generated independently of the original codes used in the primary studies. The codes were compared, and all codes that represented similarities across the primary studies and belonged to the same concept were organized into categories.

2) Development of descriptive themes:

Descriptive subthemes were formed through the merging and grouping of categories in an iterative process, staying close to the primary data in the included studies. The primary studies were read and reviewed by GS to ensure that the descriptive themes captured and reflected the depth of the data reported in the primary studies.

3) Development of analytical themes:

The descriptive themes were discussed in the research team in relation to the research question and organized within the main analytical themes. This was an iterative and cyclic process. In the analytical stage of the synthesis, we wanted to go beyond the descriptive findings trying to generate new understanding. After the development of the analytical themes, we related this to a higher-level theoretical framework to illuminate the central themes in the synthesis.

Meta-synthesis researchers’ background and preconceptions

The research team consisted of two PhD students (GS and CFO) and three researchers with a clinical and academic background, all of whom were physiotherapists (AB, GH, and BBN). Although the authors acknowledge that there has been much debate regarding the definition of prediabetes and share some of the expressed concerns in the literature regarding the usefulness of this label [ 54 , 55 ], the present analysis did not assume a critical stance toward this diagnosis, as our main aim was to use it as a descriptive category that would allow us to identify and review the existing literature in this area and on this population. It was the first author’s preunderstanding that risk perception is crucial in the initiation of lifestyle changes and that prediabetes might be a particularly challenging state in this respect. Furthermore, the researchers shared the preunderstanding that lifestyle change is complex and cannot be completely understood within a biomedical perspective. We used reflexive discussions to become aware of these preconceptions and reduce their influence on the analysis. However, in line with the qualitative research paradigm [ 56 ], we also acknowledge that they inevitably influenced the synthesis.

Literature search results

The literature search resulted in 9058 identified studies and, after duplicates were removed, 6035 studies. Titles and abstracts were screened by the first author (GS), and, of these, 54 full-text articles were found to be considered eligible. These were screened by two independent reviewers according to pre-set criteria for inclusion and exclusion, and 20 studies were finally included; see PRISMA flow diagram (Fig. 1 ).

PRISMA Flow Diagram-identification and selection of studies [ 57 ]

Study characteristics

The 20 included studies were published between 2008 and 2021 and involved 552 participants in total. The age of the participants ranged from 21–79 years; 312 participants were women and 240 were men. All participants had been diagnosed with prediabetes within the last year (when the data was collected). Eight studies were from Europe, three from Asia, two from the South Pacific, four from the USA, two from Canada, and one from Africa. Each study was systematically assessed for its research question or statement of purpose, research method, theoretical framework, sample size, and setting. The characteristics of the 20 studies included in the thematic synthesis are presented in Table 3 .

Thirteen studies reported on the participant perceived facilitators and barriers of lifestyle change when taking part in community-based lifestyle intervention programs [ 34 , 36 , 37 , 38 , 39 , 40 , 46 , 47 , 48 , 49 , 50 , 51 , 53 ], while seven studies reported on the participants perceived facilitators and barriers of lifestyle change through consultations with health care providers (no intervention involved) [ 35 , 41 , 42 , 43 , 44 , 45 , 52 ]. Thirteen studies [ 35 , 36 , 37 , 39 , 41 , 45 , 46 , 47 , 48 , 49 , 50 , 52 , 53 ] reported on the barriers and facilitators of lifestyle change and behavioural change maintenance, addressing both exercise and diet (participants exposed to an lifestyle intervention in nine studies, whereas no intervention in four studies), four studies [ 38 , 40 , 42 , 43 ] reported on exercise only (participants exposed to an lifestyle intervention in two studies, whereas no intervention in two), and three studies [ 34 , 44 , 51 ] reported on diet only (participants exposed to an lifestyle intervention in two studies, whereas no intervention in one).

Quality assessment

Of the then criteria used to assess the methodological quality [ 33 ], all the included studies met seven or more of these criteria. Two studies [ 36 , 51 ] were graded with seven out of ten points, three studies [ 37 , 38 , 53 ] were graded with eight points, six studies [ 39 , 41 , 45 , 46 , 47 , 52 ] were graded with nine points and nine studies [ 34 , 35 , 40 , 42 , 43 , 44 , 48 , 49 , 50 ] with ten points (Table 2 ). The relationship between the researcher and participants were one domain that was assessed not to be adequately described in several of the included studies [ 37 , 38 , 39 , 41 , 45 , 47 , 51 , 52 , 53 ].

Thematic synthesis of the qualitative studies

In total 986 codes were recorded from the extracted data, from which eight descriptive themes emerged. From the synthesis and analysis of the included primary studies, three main themes illuminating the perceived barriers and facilitators of lifestyle change among people with prediabetes were identified: 1) the individual’s evaluation of the importance of initiating lifestyle change; 2) strategies and coping mechanisms for maintaining lifestyle change; and 3) the significance of supportive relations and environments in initiating and maintaining lifestyle change (Fig. 2 ).

Emergent descriptive and analytical themes

In general, the primary studies demonstrated that there are multiple barriers and facilitators in the process of lifestyle change, and they exist in a complex interplay. Table 4 presents how the different primary studies are distributed across the main themes and subthemes based on whether they included lifestyle intervention programs or not, and the area of lifestyle change, being exercise or diet, or both. The presentation of the results is supplemented with quotes from participants in the included primary studies.

Theme 1: The individual’s evaluation of the importance of initiating lifestyle change

The first theme focused on the impact of the awareness and perception of risk on the individual’s evaluation of the importance of initiating lifestyle change, specifically considering reactions to the diagnosis of prediabetes and the internal struggle during the process of lifestyle change.

The impact of the awareness and perception of risk when diagnosed with prediabetes

Our analysis revealed that a vital facilitator in healthy lifestyle changes was when people became aware of being at a high risk of developing type 2 diabetes and realized the potential threat to their health. They experienced fear regarding the consequences of disease and facing an uncertain future [ 34 , 36 , 38 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 50 , 52 , 53 ]. Several participants in the primary studies reflected on the experience of having family members diagnosed with diabetes and expressed the desire to stay healthy and alive for their children and grandchildren to not become a burden to their family [ 34 , 36 , 38 , 41 , 43 , 44 , 46 , 47 , 48 ]. For example, one individual said:

There’s a big element of worry . . . like I’m on the train and I can’t stop it. You get that worry of ‘are you going to be able to stop this from getting worse?’ . . . like ‘whoa, what’s going on here?’ . . . I don’t want to become diabetic, that would be my main concern, I don’t want what comes with that. [ 48 ]

Several participants in the reviewed studies were aware of the increased risk of the progression to type 2 diabetes if lifestyle changes were not made and they were determined to stay ahead of their disease development [ 34 , 36 , 38 , 41 , 42 , 43 , 44 , 46 , 47 , 48 , 50 , 53 ]. In one of the included studies, participants reported that, at the time of their prediabetes diagnosis, their health care consultations provided little to no information on how to comprehend and understand the impact of its risk [ 52 ]. Several participants described shock when diagnosed with prediabetes [ 34 , 36 , 38 , 49 , 50 , 52 , 53 ]. For some participants this shock motivated them for lifestyle change, others found it difficult to identify themselves as being in an ‘at risk state’, as this conflicted with their own perceptions of having a healthy lifestyle creating a distance to future risk [ 42 , 45 , 48 , 52 , 53 ]. Hence, the findings illustrated how the recognition of prediabetes as asymptomatic and not associated with a medical condition or equated with severe illness led to a downplaying of the risk by the participants in the reviewed studies [ 42 , 45 , 48 , 52 , 53 ].

The internal struggle in the process of lifestyle change

Feelings of both guilt and self-blame arose with a diagnosis of prediabetes. The findings illustrated this phenomenon by describing how participants in our included studies accepted a personal responsibility for their outcomes [ 34 , 35 , 38 , 39 , 42 , 47 , 48 , 50 , 51 , 52 , 53 ]. In one study, a participant expressed a sense of commitment and personal responsibility to society in terms of lifestyle change and preventive behaviours [ 50 ]. Internal struggles with self-criticism and self-blame, especially when it came to dietary changes, were described by several participants in the included studies as leading to lower self-esteem and a lack of confidence, which, in turn, inhibited the driving force for change [ 35 , 39 , 42 , 47 , 48 , 53 ]. An individual described this feeling in the following way:

How am I going to do this? It seems so overwhelming. I know I should ideally lose a hundred pounds to get back to…my ideal weight, but it seems like such an insurmountable mountain to climb that why even try? [ 48 ]

A recurrent theme in our findings was how the gap between behavioural intentions and actual behaviour change amplified the negative feelings of guilt and self-blame that, in turn, lead to stress [ 34 , 35 , 39 , 48 , 52 , 53 ]. One of the studies demonstrated that stress affected behaviour change in terms of different emotional and cognitive responses for the participants in the included studies, with participants describing how this challenged their self-control, decision-making, and self-regulation [ 53 ]. One participant stated:

Sometimes I get very angry at myself because I don’t have the self-control to say: ‘stop eating that and go and exercise.’ Typically, I intend to do it, but then I feel anxious and I go and eat a pastry or something like that. Then after I feel terrible and I start thinking, how is it possible that I cannot get over this stress? [ 53 ]

Several of the studies described how temptation for sweet foods challenged the participants’ sense of self-control, making it difficult for them to implement healthy changes in their diet [ 34 , 36 , 44 , 45 , 47 , 51 , 52 , 53 ]. One study described how increased awareness regarding the necessity of dietary change created new cravings and temptations [ 53 ]. For some participants, having to reduce sugar and missing the sweet taste of foods were particularly challenging [ 34 , 36 , 45 , 48 , 51 , 53 ], describing it as a feeling of sacrificing the good life [ 45 ].

In some studies, the participants described that the stress and energy involved in making lifestyle changes would compromise their quality of life, also noting that they had greater concerns than progressing to diabetes [ 34 , 39 , 40 , 42 , 47 , 48 , 52 , 53 ]. One participant expressed the following:

I think there’s always a risk, I think there’s always some sort of risk, but it’s a very . . . I put it really on the backburner. If you think of priorities, it’s falling downstairs or tripping over, and I do try and eliminate risk. This is why I’ve started off with this Pilates teacher, which is definitely making me more aware of balance. Diabetes, it doesn’t worry me particularly. [ 52 ]

The importance of internal motivation and positive health feedback

Our findings demonstrated that experienced positive health feedback among the participants facilitated lifestyle change. For example, participants from several of the studies experienced benefits from exercising, such as improved physical condition and mental well-being. This encouraged them and led to a sense of accomplishment [ 41 , 43 , 47 , 49 , 53 ]. Improved physical condition, mental well-being, the enjoyment of different activities, and taking pleasure in nature were described as drivers of the maintenance of exercise change [ 38 , 40 , 41 , 43 , 46 , 47 , 49 , 52 , 53 ]. This sense of overall well-being and enjoyment was depicted as a central autonomous motivation for exercise, and, for many participants, exercise was also connected with being outdoors and taking pleasure in nature [ 38 , 40 , 41 , 43 , 49 ]. Accordingly, one individual described the following:

So, when you go outside to exercise, you feel the sunshine, you breathe in the fresh air, your body will then be good. It is for our wellbeing. [ 43 ]

Several participants in the included studies highlighted the value of former experience with exercise and how this facilitated their self-confidence to seek new activities that gave them further positive experiences with exercise [ 40 , 42 , 43 , 46 , 49 , 52 , 53 ]. Some participants explained that exercise also became integrated into their sense of self when it became a routine and a habit. Being able to identify oneself as a person with an active lifestyle and the desire to be a good role model for one’s children were facilitators for lifestyle change [ 38 , 40 , 47 , 49 ]. Participants also reported experiencing a sense of self-control that strengthened their motivation to adhere to a regular exercise regimen [ 43 , 46 , 50 , 51 ].

As with exercise, receiving positive health feedback from dietary change was described as giving a sense of mastery and self-control that facilitated maintenance. The participants in some of the studies experienced weight loss, a decrease in blood pressure, and a reduction in medication use in terms of dosage, as well as increased energy and improved sleep [ 34 , 42 , 44 , 46 , 51 , 53 ].

Theme 2: Strategies and coping mechanisms for maintaining lifestyle change

The focus in the second theme was on the strategies and coping mechanisms involved in lifestyle change maintenance, including making plans and setting attainable goals and the importance of knowledge and skills in mastering lifestyle change maintenance.

The motivation in making plans and setting goals

Making plans and setting goals were helpful facilitators of initiating and maintaining lifestyle change. Several studies emphasized that the process of guiding one’s own thoughts, behaviours, and feelings was important in order to make more concrete plans and set realistic and specific goals [ 34 , 36 , 38 , 39 , 40 , 41 , 47 , 49 , 51 , 53 ]. One participant noted:

I established a goal. I force myself to run three laps no matter how sluggish I feel. . . If I run today, I feel that I have paid attention to my health and I feel at peace. [ 39 ]

In two of the studies, self-compassion was highlighted as a strategy for making plans and setting goals [ 48 , 49 ]. Being kind to oneself was also put forward as making it easier to set attainable goals and prioritize oneself in finding the space, energy, and time for healthy changes [ 48 , 49 , 52 , 53 ]. Making time for lifestyle change was presented as a challenge in the process of making plans and reaching goals. Obligations regarding time, such as family commitments and workload, were often mentioned as barriers to participants being more physically active [ 34 , 38 , 40 , 41 , 42 , 43 , 46 , 47 , 49 , 50 , 51 , 53 ]. In several studies, female participants described how they found it difficult to find the time for and prioritize exercise when fulfilling their various responsibilities as wives, mothers, daughters, and, in some cases, caregivers [ 42 , 43 , 46 , 47 , 51 , 53 ]. One participant described their obligations as follows:

From Monday to Friday, I’m working . . . then Saturday and weekend I need to run errands for my children, my husband, and on top of that there is the housework. I also need to spend some time to visit my parents. Time is very important to me, I have so many duties and roles to fulfil, my first priority is always my family. [ 43 ]

Male participants, however, more often cited work as their reason for having ‘no time’ [ 43 ]. For example, one explained:

I am always so busy . . . in the evenings there are always papers to look at, I have no time for exercise. . . I simply don’t have the time. [ 41 ]

Knowledge and skills in mastering lifestyle change maintenance

The included studies presented a broad range of accounts about how one strategy for coping with lifestyle changes involves attaining knowledge, competence, and skills regarding exercise and a healthy diet for managing change [ 34 , 35 , 36 , 39 , 41 , 44 , 46 , 47 , 49 , 50 , 51 , 52 , 53 ]. Some of the studies demonstrated how knowledge and understanding affected how the participants behaved, enabling them to re-evaluate former habits [ 35 , 41 , 43 , 44 , 49 , 51 , 52 ].

The importance of skills and competence was highlighted in our included studies [ 43 , 44 , 46 , 47 , 49 , 51 , 53 ], with one woman describing the following:

. . . my cooking is all standard, you add the oil, the salt, and the sauce. But if you ask me to cook healthy food, like reduce the oil, reduce the salt, don’t use the sauce, then I don’t know how to cook already. Also, I have been cooking white rice all my life, now you tell me change to brown or red rice, I don’t know how to cook, how to make it tasty like white rice. [ 44 ]

Health care providers can help people with prediabetes by supplying them with information and guidance that will equip them with the knowledge, competence, and skills they need to facilitate and manage lifestyle changes and the risk they are facing [ 34 , 36 , 37 , 41 , 42 , 46 , 47 , 49 , 50 ]. Specifically, one participant mentioned the following:

It wasn’t stop this, stop that. It was cut down on this, cut down, little steps. . .The favourite saying is ‘little steps.’ And that’s probably one of the most helpful sayings I’ve ever heard. Not trying to do it in a week or two weeks, or two months or three months. It’s over a period of time, you know? [ 34 ]

Because of the perceived complexity of information regarding lifestyle change, several participants emphasized the importance of clarity and simplicity as well as pedagogical and empowering dialogue [ 34 , 35 , 36 , 37 , 41 , 46 , 47 , 49 , 50 ]. Access to information and guidance in developing manageable strategies were also deemed vital for coping with lifestyle changes [ 34 , 35 , 36 , 37 , 41 , 46 , 47 , 49 , 50 ].

Theme 3: The significance of supportive relations and environments in initiating and maintaining lifestyle change

The third theme focuses on the role of supportive relations being support from family, health care providers and peers in initiating and maintaining lifestyle change. In this final theme, supportive environments include external monitoring and support from lifestyle intervention programs, facilitating surroundings, and the availability of health promoting options for lifestyle change.

Family as allies for change and the importance of support from health care providers and peers

In the included studies, the spouse or children of the participants were described as important allies when it came to motivation for initiating and continuing lifestyle changes. Several participants highlighted how support from family members acted as a form of supervision, with family members checking up on them and encouraging shared decisions in facilitating healthy behaviours [ 40 , 42 , 49 , 51 , 53 ]. In terms of making dietary changes, the influence of one’s spouse and children was also noted as playing an important role in whether recommendations from health care providers were met or not. This influence could take the form of informative reminders from family members in meal situations [ 34 , 36 , 44 , 47 , 51 , 53 ]. For example, one woman mentioned:

My children will say, ‘mom that’s salty, don’t eat’ or you know, they will say ‘this is too fat, don’t eat’, you know what I mean? They will remind me and keep a look-out on my diet. [ 44 ]

Acceptance of the necessity of change within the family was another important factor for participants. A mutual understanding of the process of change was described as leading to increased involvement and support from family members, which, in turn motivated and encouraged participants [ 34 , 36 , 42 , 44 , 51 , 53 ]. Some studies also pointed out that family norms regarding being active could be part of participants’ identities and family cultures. In our findings, this was demonstrated to facilitate attempts to make lifestyle changes [ 41 , 43 , 51 , 53 ]. On the other hand, family norms, traditions, and culture could sometimes be barriers to lifestyle change, especially in terms of dietary changes [ 34 , 36 , 44 , 45 , 46 , 51 , 53 ]. The studies found that the participants described social expectations and pressure around providing and being offered foods as a challenge, with family gatherings and parties presented as examples of challenging settings with fewer healthy food options [ 34 , 36 , 44 , 45 , 46 , 51 , 53 ]. In the context of everyday life, food traditions and eating norms in families could also sometimes make dietary change difficult [ 34 , 36 , 44 , 51 , 53 ]. One individual described the following:

My whole family eats white rice since young, it has become a habit, a culture in us. Now say change to brown rice, not easy, it takes time for us to adjust to the new taste of brown rice. [ 44 ]

Receiving support and encouragement and not feeling alone in making lifestyle changes were described as positive effects of joining a group with other people with prediabetes [ 34 , 36 , 37 , 39 , 41 , 48 , 50 ]. Participants specifically described the benefits of sharing their experiences, exchanging ideas and strategies, and being motivated by each other [ 34 , 36 , 37 , 39 , 41 , 48 , 49 , 50 ]. Some participants highlighted that, when participating in a lifestyle program and joining a group with peers, external support from peers led to more physical activity and exercise on their part [ 39 , 41 ]. In one study, female participants described the importance of support from other women in a female-only setting, emphasizing the mutual understanding of barriers and other experiences that are specific to women [ 37 ].

Empowering communication was highlighted by participants in all studies as a key factor facilitating the supportive function of health care providers [ 34 , 36 , 37 , 39 , 41 , 44 , 46 , 47 , 49 , 51 ]. Participants in most of the studies emphasized how health care providers could facilitate lifestyle change [ 34 , 36 , 37 , 39 , 41 , 44 , 46 , 47 , 51 ]. Feeling accountable, receiving trusted communication and care, and being addressed with respect and empathy were also identified as important characteristics of this support [ 34 , 36 , 37 , 38 , 41 , 44 , 46 , 47 ]. One woman, when explaining how her health care professional helped her, stated the following:

It was the way she encouraged me, how she uplifted me. I am so grateful . . . So, I think having the right people at the forefront there just to open you up, you know, and acknowledging where I am at. [ 34 ]

The motivation of external monitoring in maintaining lifestyle change

In several studies, the participants highlighted that a successful facilitator they strongly valued was being monitored in intervention programs during the process of lifestyle change [ 34 , 36 , 37 , 38 , 39 , 40 , 46 , 47 , 49 , 50 ]. Participating in a program imparted a sense of commitment on them, and the participants were held accountable for their attempts to make healthy changes [ 34 , 36 , 37 , 38 , 39 , 40 , 46 , 47 , 49 , 50 ]. Having to report on their progress to a supervisor or having official measurements of their weight loss or improved physical condition taken in the near future, were described as strong motivators encouraging the participants to push themselves [ 36 , 37 , 38 , 40 , 46 , 47 ]. Tailoring lifestyle interventions to individuals also seemed to facilitate the process of making healthy changes. The freedom of choice and flexibility in a tailored program was seen to allow participants to set personalized and meaningful goals [ 34 , 37 , 46 , 47 , 50 ].

Five studies highlighted the importance of technological devices in monitoring healthy lifestyle change and how such devices could provide support for those not participating in a lifestyle intervention program. The data from step-counter technology and the feedback provided from this was described as motivating and inspiring [ 37 , 41 , 49 , 53 ]. For example, a user of a Fitbit stated:

I have a Fitbit that makes it easier, because I like to challenge myself to make sure I get my steps every day. So, lots of times, I’ll get home in the evening and I’ll see them at 9000 steps, and I’ll like go out and walk up and down the driveway. [ 41 ]

The value of using digital tracking and apps to document the process of change and regulate food consumption was also described as an external motivation in terms of dietary change [ 53 ], with one participant expressing the following:

I must not just settle with reducing carbohydrates, but I must, as we say, document it. I had a friend that believed that, for everything you did, you had to keep a record of it and said, ‘It’s like sports; if you don’t keep a record, you’re only practicing. [ 53 ]

In a study that used an online-modality lifestyle intervention program, the participants highlighted the logistical benefits of the flexibility and convenience of a digital follow-up [ 37 ], showing how this could make lifestyle intervention programs more accessible regarding distance and geography or according to work schedule or family obligations.

The availability of health promoting options and facilitating surroundings

Participants described experiencing barriers and facilitators of lifestyle change in their work environments, in their neighbourhoods, in their local communities, and at the societal level [ 34 , 38 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 49 , 50 , 51 , 53 ]. For example, three of the studies described how making healthy changes to one’s diet was challenging when there were limited healthy options at the workplace or local restaurants [ 34 , 44 ]. Several participants cited financial restraints as barriers to lifestyle change [ 34 , 36 , 44 , 45 , 47 , 51 , 53 ], with the high cost of healthy food leading some to choose unhealthy food because it was the more affordable option [ 34 , 36 , 44 , 45 , 47 , 51 , 53 ]. For example, one individual stated:

Look, the barrier to those goal settings is budget, you know . . . So, when you see on TV people saying they’re eating unhealthily, what they’re doing, what we’re doing is we’re eating to a budget planned to survive for the week.... So, don’t go telling poor people ‘you’re going to get diabetes if you eat this and this and this’; so we want you to eat this food, but it’s too expensive for you to buy, you know. [ 36 ]

In several studies, we found that having access to exercise facilities and organized activities in local communities, parks, and green areas made it easier to initiate and maintain physical activity and exercise [ 35 , 38 , 40 , 41 , 43 , 46 , 47 , 49 ]. However, climate and weather conditions could affect access to those spaces and some participants experienced bad weather and climate as a barrier to exercise [ 38 , 40 , 41 , 43 , 46 ]. Having access to nature and outdoor life was also described as an important facilitator for physical activity [ 41 , 43 , 49 ]. Moreover, some participants pointed out that it was too expensive for them to use indoor training facilities. In one study, participants acknowledged a governmental health promotion strategy to lower the cost of accessing different indoor training facilities as a positive solution [ 47 ].

This meta-synthesis aimed to explore, synthesize, and interpret qualitative research on facilitators and barriers of lifestyle change and maintenance among people with prediabetes. In line with the ecological framework, our findings indicate that the relevant barriers and facilitators are found within the intrapersonal, interpersonal, environmental, and policy level. We identified three main themes within these ecological levels being the individual’s evaluation of the importance of lifestyle change, strategies and coping mechanisms for maintaining lifestyle change and the importance of supportive relations and environments in initiating and maintaining lifestyle change. These themes are not independent, they exist in a complex interplay, which our discussion will reflect. In addition to the ecological framework [ 17 , 21 ] the findings will be discussed in light of the central themes in the theoretical explanations of behavioural change maintenance presented in the review by Kwasnicka et al. [ 15 ].

The individual’s evaluation of the importance of initiating lifestyle change

At the intrapersonal level, individual motives are crucial for initiating and maintaining behaviour change and are the drivers of volitional behaviour [ 15 ]. Our findings indicate that getting the diagnosis of prediabetes, affected the participants’ perception of risk and motivation towards initiating lifestyle change, but the internal struggle experienced by many participants also affected the individual’s evaluation of the importance of initiating lifestyle change. These findings align with the review by Kwasnicka et al. [ 15 ] in highlighting the importance of intrinsic motivation and autonomy in facilitating the maintenance of initial lifestyle change.

Using the label ‘prediabetes’ on individuals at high risk of type 2 diabetes may increase the perceived threat of developing diabetes [ 55 ]. Our findings illustrate that the recognition of prediabetes as asymptomatic and not equating it with severe illness in some cases led to a downplaying of the associated risk [ 48 , 52 , 53 ]. This reveals some of the complexity of initiating lifestyle change in the face of an invisible disease; thus, this is perhaps what sets the prediabetes population apart from other high-risk populations. Our findings and previous research [ 23 , 24 ] suggest that health care providers should emphasize illness severity and provide cues to action to encourage health behaviours, whilst at the same time acknowledging the fear and insecurity that might arise when dealing with the diagnosis of prediabetes.

According to a systematic review and meta-analysis by Hennessey et al. [ 58 ], struggle in the process of lifestyle change may create stress and deplete one’s cognitive and emotional capacity, which, in turn, challenges or disrupts the self-regulatory capacity. Kwasnicka et al. [ 15 ] state that self-regulation is a limited resource, and coping with behavioural barriers, overcoming temptations, managing lapses, and avoiding relapses is a demanding process and requires sustained effort. This might explain why participants in the included studies searched for a balance between preserving their mental needs and focusing on preventive behaviours [ 34 , 39 , 40 , 42 , 47 , 48 , 52 , 53 ]. According to Kwasnicka et al. [ 15 ] individuals are more likely to initiate behaviour change at times when their psychological and physical resources are plentiful, and the opportunity costs are low. Our findings reflected that when resources are low, individuals need more guidance and support in order to cope with the initiation and maintenance of lifestyle changes, especially when it comes to setting attainable goals and maintaining a balanced effort in everyday life.

The importance of intrinsic motivation and positive health feedback

According to the review by Kwasnicka et al. [ 15 ], the motivation to avoid negative health consequences is hypothesized to be insufficient to maintain preventive behaviour requiring maintained effort. In line with our findings, individuals are intrinsically motivated when lifestyle change is perceived as personally relevant and resembling one’s values and beliefs [ 16 ]. To support individuals with prediabetes in the process of initiating and maintaining lifestyle change, as well as to enhance intrinsic and autonomous motivation, it seems important that health care providers explore the individual’s perceptions of risk, their beliefs, and their personal values. In line with the ecological model this also pertains to the individual differences in culture and their different social and environmental contexts [ 21 ].

Several participants in the included studies experienced success with exercise and dietary changes after lifestyle change interventions. This was experienced through perceived positive health feedback, such as improved physical condition, weight loss, and this enhanced self-efficacy in the participants [ 41 , 43 , 47 , 49 , 52 , 53 ]. The attainment of prior success and one’s own perception of a positive psychological state are, according to Bandura [ 59 ], suggested to increase self-efficacy and are therefore important for behavioural change maintenance. This is in line with Rothman [ 60 ], who emphasizes that the individual’s decision to maintain a behaviour change is dependent on their perceived satisfaction with the received outcomes.

Strategies and coping mechanisms for maintaining lifestyle change

The process of making plans and setting goals, knowledge and skills and the formation of habits, are important aspects in the process of identifying strategies and coping mechanisms to maintain lifestyle changes [ 16 ]. These aspects are discussed mainly at the intrapersonal level but they cannot be understood isolated from social, environmental, and societal influences.

According to Hennessy et al. [ 58 ], setting goals initiates self-regulation and acts as a key mechanism for behaviour change. Self-regulation refers to any effort to actively control unwanted behaviour by inhibiting dominant and automatic behaviours, such as urges, emotions, or desires, and replacing them with goal-directed responses [ 15 ]. A systematic review by Leman et al. [ 61 ] found that people require self-efficacy and self-regulation to motivate their consistent performance of healthy behaviour.

Several participants in the included studies experienced a gap between their behavioural intentions and actual behaviour change, which then amplified their feelings of self-blame, guilt, and shame, especially when in terms of dietary changes [ 34 , 35 , 48 , 52 , 53 ]. This can cause dissatisfaction and lead individuals to either expend greater effort toward achieving the lifestyle change goals or disengage from these goals [ 15 ]. This underlines the importance of setting attainable, personal, relevant, and intrinsically motivated goals.

In two of the included studies, self-compassion was put forward as a strategy for making plans and setting goals [ 48 , 49 ]. According to Neff [ 62 ], self-compassion entails three main overlapping and interacting components: self-kindness versus self-judgement, common humanity versus isolation, and mindfulness versus over-identification. Interestingly, in a recent meta-analysis by Liao et al. [ 63 ], a positive association was found between self-compassion and self-efficacy, indicating that self-compassion may play a role in protecting one’s self-efficacy when experiencing failures [ 63 ].

A Finnish study of adults with increased risk of type 2 diabetes found that eating competence is associated with a healthy diet and could therefore, in the long term, support the prevention of type 2 diabetes [ 64 ]. Supporting autonomy and confidence is central in facilitating competence [ 16 ] and health care providers therefore play an important role when giving information and guidance. According to Gardner et al. [ 65 ], habit formation takes place after a period of the successful self-regulation of a new behaviour, and this is considered to play a fundamental role in generating health behaviour. Once a new behaviour has become a habit, it requires less effort, and the level of required self-regulation is reduced [ 15 ]. Gardner et al. [ 65 ] stated that habits persist even when conscious motivation decreases, and, therefore, habit formation should be encouraged in interventions to promote long-term maintenance.

The importance of supportive relations and environments in initiating and maintaining lifestyle change

Within the ecological framework supportive relations and environments were identified at the interpersonal level, the environmental level and the policy level, affecting the motivation for initiating and maintaining lifestyle change for individuals with prediabetes.

At the interpersonal level of the ecological framework, supportive relations and social influence can be found in formal and informal social networks [ 21 ]. In line with the ecological perspective, Barry et al. [ 66 ] highlighted the importance of socio-cultural influences in diabetes prevention policies. When addressing barriers and facilitators for lifestyle change, we must consider the impact of social norms and cultural aspects within families and communities and consider how health behaviours are shaped within different contexts [ 67 ]. Considering this, lifestyle intervention programs and health care communication aiming to facilitate lifestyle change in people with prediabetes, should include and involve the families or other significant persons in the whole process. This could enhance the individuals’ perceived sense of relatedness in the lifestyle change process, which is important in maintaining a new behaviour [ 16 ]. In line with our findings, peer support can enhance the internalization and maintenance of lifestyle change through perceived relatedness, connection, and trust [ 16 ].

A systematic review and meta-analysis that investigated the best method to improve self-efficacy to promote lifestyle and recreational physical activity in healthy adults [ 68 ], found that interventions that included feedback on their past performance or others’ performance (comparative feedback) produced the highest levels of self-efficacy.

Lifestyle intervention programmes are not necessarily suitable for all individuals with prediabetes. This can be due to different life phases, family settings or personal preferences; or practical or logistical barriers, such as care responsibility, work, or geographical distance. In one study offering an online-modality lifestyle intervention programme, participants highlighted the logistical benefits of the flexibility and convenience of a digital follow-up [ 37 ]. There is promising evidence regarding the efficacy of diabetes prevention eHealth interventions [ 69 ], and the integration of specific behaviour change techniques and digital features may optimise digital diabetes prevention interventions achieving clinically significant weight loss in individuals with prediabetes [ 70 ]. At the same time our findings described that the use of technological devices and digital follow-up was motivating and inspiring [ 37 , 41 , 49 , 53 ] and this further supports the potential of acceptance and increased use of digital eHealth interventions in the prevention of type 2 diabetes.

In line with the ecological model and our findings, barriers and facilitators to promote healthy diet and physical activity in our external environment are to a great extent beyond the control of the individual. McLeroy [ 21 ] referred to “the ideology of individual responsibility” and how this may inhibit our understanding of the potential environmental assault on health and the opportunities for healthy behaviours. According to the review by Barry et al. [ 66 ], watchfulness should be put towards a biomedical approach where prediabetes is recognized as a reversible state of abnormal glucose metabolism that can be reversed solely by altering the individual patient’s lifestyle. This may lead to an overemphasis on the individual’s responsibility for lifestyle change, resulting in the creation of policy neglecting the complex sociocultural environment affecting health and illness. Therefore, identifying behaviour change and maintenance strategies that are tailored for individuals with prediabetes in their socio-cultural environment, is of great importance for the individual having prediabetes as well as for the society in order to reduce their risk of progression to type 2 diabetes [ 71 ].

At the public policy level, there are a range of incentives policy makers can use to influence health behaviour for the population and the individuals at risk for type 2 diabetes, including legislation, information campaigns and price signals [ 72 ]. A systematic review and meta-analysis has shown that the risk of being diagnosed with type 2 diabetes is associated with low socio-economic status [ 73 ]. Moreover, individuals of a lower level of socioeconomic status are more often exposed to negative lifestyle habits, such as smoking, physical inactivity, obesity, and low fruit and vegetable consumption [ 74 ]. Thus, a central challenge when implementing lifestyle interventions in practice is reaching people with prediabetes across social groups and socio-economic positions to avoid reinforcing health inequalities.

Strengths and limitations of the meta-synthesis

To the best of our knowledge, this is the first review to explore qualitative research on the facilitators and barriers of lifestyle changes and lifestyle change maintenance among people with prediabetes. The application of a rigorous and systematic meta-synthesis technique with a transparent analytical procedure strengthens our paper. Synthesizing qualitative research is viewed as essential in achieving the goal of evidence-based practice and mainly features the use of the best available evidence as the foundation for this practice [ 75 ]. Another strength is that the included studies represent findings from several different countries with variously structured health systems. Despite this heterogeneity, we were able to identify many common themes, thus indicating how heterogeneity can be a strength rather than a limitation in a meta-synthesis [ 76 ].

A limitation to the meta-synthesis could be that the included articles were restricted to the English language, similar potential studies reported in other languages were consequently not retrieved nor appraised. Our included studies had no publication year limit, the oldest studies were conducted in 2008. However, in qualitative research one may argue that people’s experiences and perceptions on a specific topic are affected by context and the aspect of time to varying degrees. A meta-synthesis is a new and more comprehensive interpretation of already interpreted qualitative data from the primary studies [ 76 ], hence we did not use the raw data from the primary studies.

Practical implications

The findings of these meta-synthesis might inform people with prediabetes, healthcare professionals and policy makers, in terms of the need for psychological, social, and environmental support for this population. More qualitative research is needed in this field to explore the reasons behind unhealthy behaviour and consider the complex interplay between all ecological levels influencing health behaviour. The translation of lifestyle intervention programs into practice seems to be limited since rates of type 2 diabetes are set to rise further. Considering this, it would be useful to pay more attention to the importance of the communication of risk and how people perceive risk and understand the diagnosis of prediabetes. This might provide insight into why people engage (or not) in lifestyle intervention programs for diabetes prevention. Lifestyle interventions in general seem to appeal more to those with greater resources and who can apply the appropriate information to improve health [ 77 ], therefore there is also a need for studies focusing on the effect of interventions for different groups in terms of socioeconomical status, culture, gender, and level of knowledge regarding prediabetes.

This meta-synthesis offers important insights into evidence relevant to understanding the complexity and challenges of lifestyle change among people with prediabetes. Awareness of prediabetes and the perception of its related risks affects the motivation for lifestyle change; but this does not automatically lead to lifestyle changes. Facilitators and barriers for lifestyle change in people at risk for type 2 diabetes are found to be in a complex interplay within multiple levels of an ecological framework. Our findings illustrate how internal motivation and successful self-regulation facilitate lifestyle change and maintenance at the intrapersonal level. At the interpersonal level, social influence and support from family, peers, and health professionals comprise important facilitators; however, family and social norms can also represent barriers to change. Lifestyle intervention programs are important supportive contexts for lifestyle change, enhancing autonomy, competence and relatedness. Moreover, technological devices for monitoring lifestyle change could provide support for those not participating in a lifestyle intervention programme. The environmental and policy levels set the foundations for the availability of health promoting options and plays a crucial role in shaping the conditions for successful lifestyle change. A purely individual approach is far from sufficient in combating the rising global epidemic of type 2 diabetes. A great responsibility lies on health authorities and policymakers to create health-promoting environments.

Availability of data and materials

All data generated or analysed during this study are included in this published article. The data presented in our review are retrieved from the published papers of the included studies.

Abbreviations

Impaired fasting glucose

Impaired glucose tolerance

Fasting plasma glucose

Fasting blood glucose

Oral glucose tolerance test

Body mass index

Type 2 diabetes

Diabetes prevention program

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Acknowledgements

The authors would like to thank health research librarian Malene W. Gundersen for her support and guidance regarding the literature search.

This project was made possible as a part of a research-funded PhD being undertaken by GS, through internal distribution of PhD fellowship at OsloMet-Oslo Metropolitan University, Faculty of Health Sciences. No external funding was obtained for this study.

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Gyri Skoglund, Birgitta Blakstad Nilsson, Cecilie Fromholt Olsen, Astrid Bergland & Gunvor Hilde

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The first author (GS) conducted the literature search and the initial screening for relevant studies. GS, AB, GH and BBN conducted the selection of the studies and the quality appraisal. GS and AB synthesized and analysed the data from the primary studies and CFO contributed to the methodology. GS prepared the manuscript and all authors contributed to the conceptualisation, development, critical review and editing of the manuscript. All authors approved the submission of the final manuscript.

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Skoglund, G., Nilsson, B.B., Olsen, C.F. et al. Facilitators and barriers for lifestyle change in people with prediabetes: a meta-synthesis of qualitative studies. BMC Public Health 22 , 553 (2022). https://doi.org/10.1186/s12889-022-12885-8

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Qualitative analysis of mothers’ perception related to the delivery of information regarding preterm births

Doriane Randriamboarison 1 na1 ,
Elisa Fustec 2 na1 ,
Isabelle Enderlé 2 , 3 ,
Mathilde Yverneau 1 , 3 ,
Karine Le Breton 1 , 2 ,
Linda Lassel 2 ,
Nadia Mazille-Orfanos 1 &
Patrick Pladys 1 , 3

BMC Pregnancy and Childbirth volume 24 , Article number: 272 ( 2024 ) Cite this article

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Preterm birth is a major health issue due to its potential outcomes and socioeconomic impact. Prenatal counseling is of major importance for parents because it is believed that the risk of preterm birth is associated with a higher parental mental burden. Nowadays in France, the content and delivery of antenatal counseling is based on personal experience since there is a lack of official guidelines. The goal of the study was to evaluate maternal perception of antenatal information delivered in the setting of preterm births.

A qualitative study was performed using semi-structured individual interviews of 15 mothers with a child born > 26–34 GW. Data analysis was based on a constant comparative method.

Concerning prenatal counseling content, parents wanted to be informed of their role in the care of their preterm child more so than statistics that were not always considered relevant. Parents’ reactions to the announcement of the risk of a preterm birth was dominated by stupefaction, uncertainty and anxiety. When it comes to the setting of prenatal counseling, patients’ room was deemed an appropriate setting by parents and ideally the presence of a coparent was appreciated as it increased patients’ understanding. The physicians’ attitude during the counseling was considered appropriate and described as empathic and optimistic. The importance of support throughout the hospitalization in the form of other parents’ experiences, healthcare professionals and the possibility to preemptively visit the NICU was emphasized by participants. Delivery experience was dominated by a sense of uncertainty, and urgency. Some leads for improvement included additional support of information such as virtual NICU visit; participants also insisted on continuity of care and the multidisciplinary aspect of counseling (obstetrician, neonatologist, midwife, nurse, lactation consultant and psychologist).

Highlighting parents’ expectations about prenatal counseling could lead to the establishment of overall general guidelines. However, some topics like the use of statistics and mentioning the risk of death underline the importance of a personalized information.

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Introduction

According to the latest French National Prenatal Survey (NPS), the rate of preterm birth was 7% in 2021, which represents about 46,000 newborns [ 1 ].This rate has remained stable since 2016. Most of preterm deliveries happen between 32 and 36 GW (5.3%), and1.7% occurbetween 22 and 31 GW [ 1 ].

Preterm birth has long term effects and even though survival without neuromotor or sensory disabilities has improved in the last decades from 45.5% in 1997 to 62% in 2011 [ 2 ], ex-preterm infants present more neurodevelopmental complications and motor disorders such as cerebral palsy, cognitive disabilities, school learning disabilities [ 3 , 4 ]. Considering all these outcomes and their socioeconomic impact,preterm birth represents a major health issue. Therefore, preventingpreterm labor and neonatal complications associated with a preterm birth is of utmost importance [ 2 ]. An integral part of high-risk pregnancy management is announcing to the parents that their pregnancy is no longer as they had envisioned it. It is the healthcare professional’s responsibility to make sure the patient understands all the information necessary to apprehend the medical course and to make informed decisions [ 5 ]. In this setting, communication in addition to bringing emotional support and conveying empathy also plays a legal role. This information is delivered during an antenatal consultation.

During the antenatal consultation, neonatologists focus on neonatal complications and how to manage them. This has been shown to be helpful for parents [ 6 ]. It contributes to psycho-social support, lowers risk of postpartum depression and mother-infant bonding disorder [ 7 ]. However, this new knowledge may also contribute to parents’ anxiety [ 8 ]. Parents’ needs and expectations regarding antenatal counseling are not always correctly understood by clinicians [ 9 , 10 ]. Furthermore, this information is often delivered in a stressful environment, where there is a concomitant concern for the mother’s health. Information concerning obstetrical outcomes must also be provided including causes of preterm birth, treatments, and prognosis. In this setting, delivery becomes an abrupt and unanticipated event which can generate an important amount of stress. High-risk pregnancies and emergency deliveries are more at risk to generate posttraumatic stress disorder than regular pregnancies (18.5% versus 4%) [ 11 ].Neonatal outcomes are deeply connected to the obstetrical path and perinatal collaboration between neonatal and maternal caregivers improves families’ experience in all aspects of preterm birth [ 12 ]. Therefore, the way in which information is delivered in the antenatal period has a major impact on the parents’ experience throughout their subsequent path.

Nowadays in France, the content and delivery of antenatal counseling is based on personal experience since there is a lack of official guidelines. Most studies evaluating antenatal counseling are focusing on extreme preterm birth [ 13 , 14 , 15 , 16 ]. However, even though preterm infants born after 26 GW are at lower risk of adverse outcomes, they represent an important population in terms of prognosis. Moreover, these studies essentially focus on parents’ role in deciding between active support and palliative care [ 17 ], overlooking all other aspects of prenatal information. Most research has also been conducted from a neonatological point of view without the obstetricians’ input.

The aim of this qualitative study is to evaluate maternal perception of antenatal information delivery in the setting of preterm birth between 26 and 34 GW. Our goal is to improve our practice by bringing some insights on how to best counsel patients at risk of preterm birth and help them understand complex information [ 18 ].

Study context

The neonatal and obstetric departments of the university hospital of Rennes offer prenatal counseling and maternal care to all patients at risk of preterm delivery. Information delivered is based on healthcare professionals’ experience. Concerning neonatal antenatal counseling, interviews are conducted by a senior neonatologist as soon as possible after patient’s hospital admission. If the situation evolves or if patient asks for an update, follow-up consultations may be conducted by the neonatal physician. The obstetric team (senior obstetricians and neonatologists, residents and midwives) informs patients on obstetrical care and prognostication. All information given is adjusted on clinical context and patient’s history.

A qualitative study was performed. We followed Consolidated Criteria for Reporting Qualitative Studies (COREQ) guidelines [ 19 ]. Then we analyzed quantitative population’s characteristics.

Participants

Mothers with a child born between 26 and 34 gestation weeks admitted to the NICU at the tertiary care university hospital of Rennes from January 2019 to April 2020 and discharged from the hospital at the time of inclusion were selected. The time lag between birth and interview ranged from 6 months post-discharge to a maximum of 18 months, in order to minimize memory bias We included in our study mothers who had been hospitalized in the level 3 high risk pregnancy unit of the University hospital of Rennes and received prenatal counseling from a neonatal attending physician. Some patients had their first medical care at another hospital and then were transferred to the hospital of Rennes before birth. Transferred patients were also included. Our exclusion criteria were children born before 26 GW, deceased children, deceased mother, patients under 18 years old, patients who did not speak fluently French, patients with cognitive disabilities, patients without contact information, patients who gave birth in another hospital and patients whose child (or one of the children in case of multiple pregnancy) was still hospitalized at the time of the study.

Setting and sample

A physician was responsible for explaining the research project to potential participants and for sending an email newsletter describing the purpose and outline of the research. Mothers were invited to participate in a semi-structured interview. Participants responded to this invitation via email. Investigators who conducted the interviews informed participants, in the letter and then orally, about the aim of the study and their right to withdraw their participation at any time without giving any reason. Reminders were then sent via emails to the participants who did not respond to the letter. Patients who did not have an email address were recruited by phone calls made by one of the investigators. All mothers gave their informed consent before participating. We planned on stopping inclusion of patients when saturation was achieved (i.e. no new themes or ideas were generated by subsequent interviews).

Considering the difficulty for patients to come to the hospital for the interview, we initially let participants choose between a face-to-face interview or over the phone according to their convenience. In the face of the Sars-CoV-2 pandemic and its associated restrictions, all interviews were then conducted over the phone.

Data collection

Semi-structured interviews were conducted in French by one or both interviewers who were a neonatal resident (DR) and an obstetrician-gynecologist (OB/GYN) resident (EF). Data collection spanned from June 2020 to March 2021. Interviews were semi-structured, with a predefined list of open-ended questions focusing first on the information received concerning the hospitalization, treatments, and prenatal counseling, and then on desired improvements, and open suggestions. The interview guide was developed by authors (DR, EF, NM, IE and KL) after a review of the literature before starting the study. If applicable, face-to-face interviews were conducted at a private office space located in the NICU.

To ensure consistency, we used the same interview guide in every interview (Table 1 ). The interviewers received preliminary training on reformulation to carry out the in-depth interviews with qualitative method referents. They reported their involvement after each interview. Sessions were recorded with the consent of each participant and then transcribed verbatim and de-identified. The aims and rational for the research were disclosed to the participants in the newsletter. We confirmed patient’s understanding during the interview.

Throughout the session, the moderator summarized and reformulated the results and presented them back to the participants to ensure information was accurate and that their comments had been correctly understood. At the end of the session, participants completed a short quantitative questionnaire to obtain their socio-demographic characteristics. We obtained remaining socio-demographic data from the patient electronic medical record.

Data analysis

The analysis procedure was conducted byfour researchers (EF, DR, NM and IE) using an inductive approach to identify themes that emerged from the data. Each transcript was independently read several times to facilitate immersion in the data.The thematic analysis of the data promoted a logic of emergence. The interviews were first analyzed using a manual method of coding the themes and sub-themes. The researchers used open coding process to summarize participants’ views by assigning words to quotes or paragraphs. The coding of the researchers were then compared and in the event of any discrepancies or a disagreement, other physicians (MY, KL, LL and PP) adjudicated. This method enhances the validity of the assigned themes. We kept including participants in the study until saturation was achieved (i.e. no new themes or ideas were generated by subsequent interviews).

The list of themes and sub-themes was then generated and extracted in tabular form. Constant comparative analysis was used to assess overall saturation [ 20 ]. Authors selected verbatim quotes to illustrate the thematic findings. We coded data from transcripts using the Saldaña method [ 21 ] To ensure the reliability of the coding and analysis of the data, findings were discussed among the authors. At the same time we used the NVivo® 12 Plus software interface (QSR International) to support the coding tree. The software was also used to check the frequency of occurrence of themes and to ensure that our main themes were consistent. NVivo’s contribution was also to facilitate the link between the highlighted themes and the verbatim references.

Ethical considerations

The study was approved by the local Ethics Committee (reference number 20.61). Participation was on a voluntary basis. The university hospital of Rennes recorded the material in accordance with all French ethical regulations (ref: MR-003).

We conducted a total of 15 interviews, which took place between June 2020 and March 2021.We obtained data saturation after 12 interviews. Amongst the three first participants who were given the choice of the interview setting, two of them decided on a face-to-face interview, and the last one over the phone. For all remaining participants, we only conducted phone interviews.Average length of interviews is 44 min ± 11 min (minimum 25 min, maximum 66 min). Face to face interviews lasted 32 and 42 min each.

Participant’s characteristics are presented in Table 2 . On average, participating mothers were 31.4 years old (± 4.9 years). Newborns were on average 30.2 ± 2.5 weeks of gestation at birth.

Characteristics of prenatal counseling

Circumstances of prenatal counseling are reported in Table 3 . Interviews mostly took place in the patient’s hospital room, and within the first days after admission.

Thematic analysis

Seven themes were extracted from our data analysis. We subdivided each theme into sub-themes and illustrated some of them with participants’ quotes from the interview (presented in Table 4 ).

Prenatal counseling content.

Neonatal complications and care .

Information delivered during prenatal counseling was the most mentioned during the interviews. Participants recalled being told about neonatal complications. They talked about respiratory outcomes first, short and long term. Then neurological complications were evoked including specific follow-up and neurosensorial risks. Mothers also reported receiving information concerning the NICU: the rooms, the equipment, the incubator. They remembered being told about the usual medical course and the steps during hospitalization.

Parents’ role .

How participants should act with their preterm newborn is commonly addressed during antenatal consultation. Mentioning the baby’s future life makes parenthood more real. For instance, practical aspects such as transferring parents’ smell through comfort blankets and cuddly toys were greatly appreciated. Being able to spend unlimited time with their child was also reassuring. Breastfeeding is another important topic, especially knowing that it is feasible even in case of preterm delivery. This notion was carried by the obstetric team. Midwives adapted their support to patients’ need, no matter what they first wished. A participant explained that she changed her mind based on the information she received about the role of breast milk for preterm babies: ‘Midwives who listened, who taught me how to pump my milk even though I was totally reluctant to breastfeed’ (patient no 2).

Finally, participants mentioned skin to skin as a beneficial act to their child’s well-being. Mothers report highly on it, as shown by patient no 8’s quote: “they told me that I could stay close to her, that I was going to be able to touch her […] to hold her against me. When I was told that, I felt a lot better because I didn’t know I would have the opportunity to hold her.”

Use of statistics .

To participants, statistics and numbers were either not mentioned or considered irrelevant. Indeed, seven patients reported not receiving any and seven had no recall of any statistics. Only one patient was looking for statistical data in the prenatal counseling and insisted on receiving some. When asked if they wished they were given some, four participants were against, four would have appreciated it and seven had no opinion. The ones in favor explained they wanted to hear positive numbers such as survival rates. Some participants described themselves as wanting to know everything and be as informed as possible. Participants who did not wish to receive any statistics argued that it would have scared them, and made them worry about worst case scenario.

Risk of death .

Mortality of preterm children was not mentioned to every participant as four participants reported death not being talked about during antenatal counseling. Avoiding this subject was appreciated by some participants. One mentioned they felt like practitioners could sense which information was relevant to them. To other participants, not talking about death could lead parents to imagine the worst-case scenario.

Mothers’ feelings and reactions.

Announcement of a risk of preterm birth .

Participants often reported feeling paradoxically in good health while being diagnosed with a risk of preterm birth. Therefore, such a diagnosis was reported as being a shock. Another feeling commonly mentioned is fear for the child’s health. On the contrary, some participants felt optimistic.

Prenatal hospitalization experience .

When asked how their hospital stay went, participants reported as many positive aspects as negative ones. They generally appreciated the close medical attention and support which were reassuring. However, some of them also mentioned the difficulty to accept the fact that they needed to stay in the hospital. Feelings mentioned by order of frequency were stupefaction, uncertainty, hope and anxiety. The sudden change during their pregnancy brought disorientation to some participants. Another feeling described was not knowing exactly what would happen to them and when delivery would occur. Participants also mentioned developing some hope during their hospital stay, especially for participants who were hospitalized for the longest period of time. As time went by and nothing serious was happening, they found themselves hoping they would slowly escape preterm birth’s adverse outcomes. The whole experience of a risk of preterm birth generated anxiety for several participants. They continuously feared for their child’s life. Moreover, being hospitalized, away from their homes and relatives, could enhance this anxiety.

Circumstances of prenatal counseling.

Co-parent present .

Both parents being present during antenatal counseling was the most frequent situation. Having the other parent present allowed to reflect further on what had just been said. It kept the information alive and encouraged questions.

Organization of prenatal counseling .

All participants could describe how prenatal counseling went. Consultations happened in their hospital room, which participants found appropriate.

Counselor’s attitude .

Participants commented on the physician’s skills. Fourteen of them defined the neonatologist as optimistic, and showing empathy. They reported the physician using understandable language to them. According to participants, the counselor also personalized information according to the patient and the situation, as Patient no 1 mentioned: ‘I think they really understood [me] and told me what I needed to know without telling me too much.’

Support during prenatal hospitalization.

Close relatives seemed to be the most important emotional support throughout hospitalization. The other parent was the most mentioned, followed by first-degree family members, especially mothers and sisters, and for some participants, friends. Healthcare professionals were also referred as supportive. Midwives and assistant nurses were in the first line of patient’s care and mothers relied on them. The psychologist was also cited, bringing moral, psychological, and emotional support. Shared experience with other parents who went through a similar path were appreciated by participants. They mentioned feedback from relatives who had a preterm delivery, letters, and pictures from former parents of NICU’s babies, who are now doing well. One patient said she had the need to search the internet, even though it did not necessarily bring her comfort. The tour of the NICU was also appreciated by mothers and considered as a real source of support.

Delivery experience.

Participants described information on delivery as clear but mentioned the difficulty dealing with delivery’s unpredictability. They had questions on how far in their pregnancy they could possibly go, whether they were going to deliver vaginally or by cesarean, if they were going to be induced. Mothers also talked a lot about the urgency of delivery and reported a feeling of being rushed. The need for support in this difficult situation was important. The presence of the co-parent was requested by participants, although it may not always have been possible if delivery was impending. They counted on the midwives and the obstetric team to support them as well.

Additional sources of information.

The most mentioned source of information was the tour of the NICU, when the patient’s health allowed it, and delivery was not impending. Written documents were also presented to patients and appreciated. Most participants mentioned receiving paper documents, including one on breastfeeding and one explaining planned cesarean section. Some participants reported searching information on the internet.

Suggestions for improvement.

Additional support of information .

Participants suggested pictures and videos. A virtual tour of the NICU to show the rooms with their equipment was also mentioned. The expectation of what the photographs should describe was controversial. Pamphlets with pictures of staff members to help identify each professional’s face and tasks were suggested. Written documents about local neonatal units, from highly intensive care to current care, and how they connect to each other, would be appreciated as well. Explanations on milk collection centers (lactarium) were also requested as several participants did not have a complete understanding of their functioning.

Antenatal information .

Participants wanted the same practitioners to perform the consultation, as they sought continuity of care and commitment from healthcare professionals. Several participants also mentioned that the presence of a neonatal nurse during the neonatologist’s counseling would be beneficial. One participant suggested having the psychologist present to adjust psychological follow-up after the meeting. Sharing other parents’ experiences was also brought up. Participants wished they could have joined talk groups in the high pregnancy risks unit. Participant no 9 suggested to tell future parents confronted with a risk of preterm birth about the care of a preterm child: “And to tell them it’s a fight for the baby and it’s a fight for the parents.”

Postpartum care .

Several participants addressed postpartum mothers’ care. They expressed the need to be hospitalized in a unit without any newborn instead of the usual post-delivery maternity units, as it made the absence of their child harder to endure. Some of them even wished to be in the same room as their infant, included in the intensive care unit, such as Kangaroo Mother Care (KMC) units. Another commonly mentioned topic was breastfeeding: they wished for more help and support during the first steps of setting breastfeeding.

This study on the information related to preterm birth and its consequences, delivered during prenatal care, gives a thorough insight into the perception of mothers faced with the care of a preterm infant. The announcement of a risk ofpreterm birth came as a shock for patients, as there often was no forerunner. However, the information delivered byneonatologists was overall described as clear, adapted, and carried out with optimism and empathy. Concerning hospitalization in the high-risk pregnancy unit, participants emphasized the importance of having different sources of support to help them cope with anxiety and unpredictability. The feedback provided by participants to improve the delivery of information included the development of visual sources of information.

Providing information on a situation that cannot be predicted is a difficult task. Parents need to be aware that the ability to give an accurate prognosis before delivery remains limited [ 22 ]. Our study shows that some parents wish to have as much information as possible to be fully prepared, whereas others would like to only hear what is very necessary. Many studies on prenatal counseling have shown the importance of personalized information. Most of them focus on the field of extreme prematurity. However, Gaucher et al. demonstrated, in a preliminary qualitative study of 5 interviews [ 23 ], results comparable to our own on the content of patients’ expectations during this antenatal interview. This initial study was followed by a quantitative study [ 24 ] designed to verify their results on a larger scale using a quantitative method. This is one of the few studies which has focused on the maternal experience beyond extreme prematurity, but with a quantitative approach. Healthcare professionals must try to identify parents’ expectations and adapt their speech accordingly [ 18 ]. Culture and social background should also be taken into consideration, as well as level of understanding [ 25 ]. Personalization is probably the most important aspect and should be applied to all parts of antenatal care [ 26 , 27 ](. We also found these results in our study, but our qualitative approach, which is relevant for assessing mothers’ experiences, provided additional data on the way in which parents wish to receive this information. Learning how to identify parents’ wishes should be a part of residents’ training as it is not an easy task. Moreover, delivering unwanted information can create the wrong environment and hinder the parents and healthcare providers relationship [ 13 , 14 ]. Misunderstanding can generate miscommunication and dissatisfaction which can lead to suboptimal care [ 18 ]. What practicians think parents understood may not reflect what parents actually report being told [ 22 ].

In our findings, the wish for statistics and figures varies from one participant to another. Physicians may be confronted with the question of whether or not to share them. A study showed that some mothers, especially those with a high education level appreciated exact statistics more than general facts [ 6 ]. It brings us back to the idea of personalizing our counsel. Geurtzen et al. showed that parents’ choice on statistics was divided, and if given, these should be well explained [ 26 ]. However, a systematic review on parent communication needs during antenatal consultations found that parents wished for more than only quantitative data concerning mortality and morbidity. For instance, they expect information on their role [ 14 ]. So before giving statistical data, physicians should seek if parents want them and provide them in a way that is understandable and relevant to this individual situation.

In our study, physician’s skills and attitude are well remembered by mothers, suggesting the idea that if parents feel in a safe and trusting environment, they will be more willing to listen, understand and ask questions. Other studies found that in order to improve pedagogy, the speaker should be compassionate, empathic, honest, and caring [ 10 ]. Nevertheless, parents also expect truth and real outcomes and importantly, in words they can understand [ 14 ]. Our study shows that participants had a positive experience with well conducted antenatal counseling, even though the risk of neonatal death was brought up by the physician. As pointed in previous research work, truthful information, even when difficult, can be expected from physicians regarding prenatal information. Some hope should also be provided, however some physicians may fear giving false hope [ 16 ]. The timing of the information delivery is another aspect of prenatal counseling that also needs to be personalized. Too soon can be stressful if the patient is still accommodating to their new situation [ 18 ]. On the contrary, too late may increase mother’s stress. Uncertainty of the prognosis and the possible threat of sudden emergency delivery add difficulty to the timing of antenatal counseling.

Several participants from our study brought up the positive impact of a nurse being present during counseling, which illustrates the importance of multidisciplinarity. Indeed, it has been shown that nurses can rephrase and check parents’ understanding [ 14 ]. Moreover, in the Netherlands, guidelines mention antenatal counseling should be performed with both an obstetrician and aneonatologist [ 15 ]. An American study supports the idea that optimal communication between the obstetric and neonatal teams improves outcomes and safety during the peripartum period [ 28 ]. When combined with an obstetric expertise, neonatal information can be more accurate and adapted to the degree of emergency. .

The use of multiple means of information delivery was supported by our participants including written, oral and visual. A study on the use of a decision aid in antenatal counseling showed that written information was often too complicated and understanding relied on parents’ educational level. Consequently, written information should be completed by oral explanations from a professional [ 18 ]. This has proven its efficacy in the obstetric field [ 25 ]. Such documents should be preferably personalized and adjusted to parents’ needs [ 26 ]. A visual support can decrease mothers’ anxiety [ 7 ]. Indeed, the time between antenatal counseling and the actual day of delivery can be long and mothers’ memory of the information delivered may fade. Visual aid can help parents remember information, even more so in a stressful environment [ 29 ]. A. D. Muthusamy et al. [ 30 ] found that submission of the medium before or while the information is being delivered improved recall of the information and decreased anxiety. However, providing this support after the information has been delivered is not very effective. Written information may not improve factual recall after verbal counseling of mothers in preterm labor [ 31 ]. Concerning the support of written information, Nicole M Rau and al provided that a paper handout and multimedia tablet were equally effective in the labor unit to supplement verbal preterm birth counseling and decrease parental anxiety [ 32 ]. This approach could be used in the setting of antenatal counseling. Alongside official documents provided by the hospital, the use of the Internet as a means of information has become increasingly important for pregnant women over the years [ 28 ]. In our study, the internet was depicted as negative because mothers mostly reported on their “worst case scenario” findings. However, other research show that even though internet findings may generate anxiety, they can also reassure mothers-to-be and be a rich and accessible source of support [ 33 ].

Strengths and limitations

Our study is novel as it explores the obstetric side, and the research team was multidisciplinary, including neonatologists, obstetricians, and a psychologist. Moreover, the fact that we did not focus on periviable terms enabled us to study several aspects of prenatal counseling other than decision-making. Even though our interviews were conducted over the phone for the most part due to the sanitary conditions, the interview durations were satisfactory which shows participants’ trust towards researchers. Furthermore, we included patients who gave birth at least 6 months before the interview, and whose child was discharged which gave participants time to process what happened, allowing them to tell their experience. Another asset of this study is that it reflects real world experience and not a simulation like many previous studies [ 34 ].

One of the limitations of our study is that our results are impacted by some mothers’ characteristics: our participants mostly had preeclampsia. In consequence, we cannot generalize our results to all high-risk pregnancy hospitalizations, in particular spontaneous preterm labor. However, preeclampsia causes longer hospital stays and thus allows deeper insights on the hospital experience. Patients who present with spontaneous preterm labor sometimes don’t have time to receive antenatal counseling before delivery. Other biases to consider are gestational age at admission and delivery, and pathology of the newborns, as they may have influenced participants’ experiences. We also did not include mothers who had lost their child. They probably have a very different insight that is important to consider. This stems from the fact that we decided to not include very extreme preterm children, therefore mortality was less important in our population. In order to explore mothers’ point of view after the loss of their child, the research team would have to be well prepared to deal with grief and bring emotional support during the study. Another population that was not included was mothers who had gotten prenatal counseling but ended up delivering at full term. We did not explore the impact of such information on preterm birth and the stress generated on those patients. Fish et al. showed that prenatal counseling improved parental knowledge and satisfaction without increasing anxiety [ 35 ]. Finally, in this study we focused on mothers’ experiences. It would be interesting to compare them with the coparents’ point of views, as there could be differences in psychosocial perceptions between them.

To improve the delivery of information related to preterm births, several leads could be explored. Using simulation to personalize the information in prenatal counseling remains interesting and has been widely described in the literature, but an evaluation of the clinical implementation after this simulation training is essential. Furthermore, multidisciplinarity could be developed by training different specialists to perform prenatal counseling. Written documents and videos may be elaborated to improve patients’ understanding.

The risk of preterm birth is a complex situation and all involved healthcare professionals should reflect on the best way to inform and support patients. Providing some general guidelines on how to respond to mothers’ expectations could be relevant, however personalization is the most fundamental aspect to keep in mind when delivering information on preterm birth. Hence the skills associated with information delivery in preterm births could benefit from the development and improvement of tools like: healthcare professionals’ training, interview guide for physicians that integrates parents’ expectations, and multidisciplinary counseling including all actors involved in the care of the mother and the child.

Data availability

All authors had full access to the data and materials. Data is available from Nadia Mazille-Orfanos ([email protected]) upon reasonable request.

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Doriane Randriamboarison, Elisa Fustec Contributed equally.

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Department of Neonatology, University Hospital of Rennes, Rennes, 35000, France

Doriane Randriamboarison, Mathilde Yverneau, Karine Le Breton, Nadia Mazille-Orfanos & Patrick Pladys

Department of Obstetrics and Gynecology, University Hospital of Rennes, Rennes, 35000, France

Elisa Fustec, Isabelle Enderlé, Karine Le Breton & Linda Lassel

Faculty of Medicine Rennes 1 University, Rennes, France

Isabelle Enderlé, Mathilde Yverneau & Patrick Pladys

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DR, EF, IE, KL, NM participated in the study design, collection and analysis of the data and the writing of the report. NM, IE and MY participated in the study design, trained the interviewers, guaranteed the expertise of the qualitative method and participated in the analysis of the data through N Vivo software. LL and PP participated in study design, data collection, writing and the interpretation of the data. DR and EF participated in organisation of the interviews and collection of the data. All authors revised this article critically, approved the final manuscript and agreed to its being submitted for publication. DR, EF, IE, KL, MY, LL, NM, and PP had complete access to the study data that support the publication.

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Correspondence to Nadia Mazille-Orfanos .

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Randriamboarison, D., Fustec, E., Enderlé, I. et al. Qualitative analysis of mothers’ perception related to the delivery of information regarding preterm births. BMC Pregnancy Childbirth 24 , 272 (2024). https://doi.org/10.1186/s12884-024-06404-3

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Building public engagement and access to palliative care and advance care planning: a qualitative study

Rachel Black ORCID: orcid.org/0000-0001-8952-0501 1 ,
Felicity Hasson ORCID: orcid.org/0000-0002-8200-9732 2 ,
Paul Slater ORCID: orcid.org/0000-0003-2318-0705 3 ,
Esther Beck ORCID: orcid.org/0000-0002-8783-7625 4 &
Sonja McIlfatrick ORCID: orcid.org/0000-0002-1010-4300 5

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Research evidence suggests that a lack of engagement with palliative care and advance care planning could be attributed to a lack of knowledge, presence of misconceptions and stigma within the general public. However, the importance of how death, dying and bereavement are viewed and experienced has been highlighted as an important aspect in enabling public health approaches to palliative care. Therefore, research which explores the public views on strategies to facilitate engagement with palliative care and advance care planning is required.

Exploratory, qualitative design, utilising purposive random sampling from a database of participants involved in a larger mixed methods study. Online semi-structured interviews were conducted ( n = 28) and analysed using reflexive thematic analysis. Thematic findings were mapped to the social-ecological model framework to provide a holistic understanding of public behaviours in relation to palliative care and advance care planning engagement.

Three themes were generated from the data: “Visibility and relatability”; “Embedding opportunities for engagement into everyday life”; “Societal and cultural barriers to open discussion”. Evidence of interaction across all five social ecological model levels was identified across the themes, suggesting a multi-level public health approach incorporating individual, social, structural and cultural aspects is required for effective public engagement.

Conclusions

Public views around potential strategies for effective engagement in palliative care and advance care planning services were found to be multifaceted. Participants suggested an increase in visibility within the public domain to be a significant area of consideration. Additionally, enhancing opportunities for the public to engage in palliative care and advance care planning within everyday life, such as education within schools, is suggested to improve death literacy and reduce stigma. For effective communication, socio-cultural aspects need to be explored when developing strategies for engagement with all members of society.

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It is estimated that globally only 14% of patients who require palliative support receive it [ 1 ]. The World Health Organisation (WHO) advocates for palliative care (PC) to be considered a public health issue and suggests earlier integration of PC services within the wider healthcare system is required [ 2 ]. However, research has shown that a lack of public knowledge and misconceptions about PC may deter people from accessing integrative PC services early in a disease trajectory [ 3 ]. Integral to good PC is the facilitation of choice and decision-making, which can be facilitated via advance care planning (ACP). Evidence suggests that ACP can positively impact the quality of end of life care and increase the uptake of palliative care services [ 4 ]. While ACP is commonly associated with end of life (EOL) care, it provides the opportunity for adults of any age to consider their wishes for future care and other financial and personal planning. However, there is evidence of a lack of active engagement in advance care planning (ACP) [ 5 ]. Recent research exploring knowledge and public attitudes towards ACP found just 28.5% of participants had heard the term and only 7% had engaged in ACP [ 6 ]. Barriers to engagement in ACP discussions have been found to include topics such as death and dying are considered a social taboo, posing an increased risk of distress for loved ones; and [ 6 ] a misconception that ACP is only for those at the end of life rather than future planning [ 7 ]. Therefore, there is a need for a public health approach to ACP, to enable and support individuals to engage in conversations about their wishes and make decisions surrounding their future care.

The need for a public health approach to PC, to tackle the challenges of equity and access for diverse populations, was noted in a recent Lancet paper [ 8 ]. This is further supported in a recent review, exploring inequalities in hospice care in the UK, Australia, New Zealand, and Canada which reported that disadvantaged groups such as those with non-cancer illnesses, people living in rural locations and homeless individuals had unequal access to palliative care [ 9 ]. They postulated that differing levels of public awareness in what hospice care provides, and to whom, was an influencing factor with variations in health literacy and knowledge of health services being present in both minority and socioeconomic groups [ 9 ].

Changes in how we experience death and dying have resulted in a shift away from family and community settings into healthcare settings. The Lancet commission exploring the ‘Value of Death’, suggests it has created an imbalance where the value of death is no longer recognised [ 10 ]. The commission’s report posits the need to rebalance death, dying and grieving, where changes across all death systems are required. This needs to consider how the social, cultural, economic, religious, and political factors that determine how death, dying, and bereavement are understood, experienced, and managed [ 10 ].

New public health approaches that aim to strengthen community action and improve death literacy, through increased community responsibility are reflected in initiatives, such as ‘Compassionate Communities’ and ‘Last Aid’ [ 11 , 12 ]. However, a suggested challenge is the management of potential tensions that are present when attempting to conceptualise death in a way that mobilises a whole community [ 13 ]. Whilst palliative care education (PCE) can be effective in improving knowledge and reducing misconceptions, many PCE intervention studies, have focused on carers and healthcare professionals [ 14 ]. Initiatives such as ‘Last Aid’ attempt to bridge this gap by focusing on delivering PCE to the public, however, they are not embedded into the wider social networks of communities. It can be argued that public health campaigns, such as these are falling short by neglecting to use the full range of mass media to suit different ages, cultures, genders and religious beliefs [ 15 ]. Consequently, to understand what is required to engage the public successfully, the voice of the public must lead this conversation. Therefore, this study sought to explore public views on strategies and approaches to enable engagement with palliative care and advance care planning to help share future debate and decision making.

Within the last decades the delivery of PC and ACP have been increasingly medicalised and viewed as a specialist territory, however in reality, the care of those with life-limiting conditions occurs not only within clinical settings but within a social structure that affects the family and an entire community [ 16 ]. Therefore, death, dying and bereavement involve a combination of social, physical, psychological and spiritual events, therefore, to frame PC and ACP within a public health approach the response requires a shift from the individual to understanding the systems and culture within which we live. The Social Ecological Model (SEM) recognises the complex interplay between individual behaviours, and organisational, community, and societal factors that shape our acceptance and engagement. SEM provides a framework to understand the influences affecting engagement with PC and ACP and has been utilised as a lens through which the data in this study is explored.

Qualitative research, using semi-structured interviews were adopted as this enabled an in-depth understanding of public views on strategies to enable engagement with PC. This research was part of a larger mixed-methods study [ 17 ]. Comprehensive Consolidated Criteria for Reporting Qualitative research (COREQ) were used [ 18 ](See Supplementary file 1 ).

A purposive random sampling method, using a random number generator, was adopted to recruit participants who consented to be contacted during data collection of a larger mixed methods study. Selected individuals were contacted by telephone and email to invite them to participate. Inclusion and exclusion criteria are outlined in Table 1 . Interested individuals were provided with a participant information sheet detailing the aims of the study and asked to complete a consent form and demographic questionnaire.

A total of 159 participants were contacted, 105 did not respond, 21 declined and three were ineligible to participate. A total of thirty participants consented, however, two subsequently opted to withdraw prior to the interview.

Data collection

Data was collected from December 2022 to March 2023 by RB. The qualitative interview schedule comprised four broad topic areas: (1) participants’ knowledge of PC and ACP; (2) sources of information on PC and ACP and current awareness of local initiatives for public awareness; (3) knowledge of accessibility to PC and ACP and (4) future strategies for promoting public awareness of PC and ACP, with a consideration of supporting and inhibiting factors. The interview schedule was adapted from a previous study on palliative care to incorporate the topic of ACP [ 3 ] (See Supplementary file 2 ). This paper reports on future strategies.

Participants were asked to complete a short demographic questionnaire prior to the interview to enable the research team to describe the characteristics of those who participated. These questions included variables such as age, gender, religion, marital status, behaviour relating to ACP and experience of PC.

Data was collected via online interviews conducted using the videoconferencing platform Microsoft Teams. Interviews lasted between 20 and 60 min and were recorded with participant consent. Data were stored on a secure server and managed through NVivo 12 Software.

Data analysis

Qualitative data were transcribed verbatim automatically by Microsoft Teams and the transcripts were reviewed and mistakes corrected by the interviewer. All identifying information was removed. Transcripts were analysed using reflexive thematic analysis which involved a six-step process: familiarisation, coding, generating initial themes, developing and reviewing themes, refining, defining and naming themes, and writing up [ 19 ]. Themes were derived by exploring patterns, similarities and differences within and across the data in relation to participant’s views on the promotion of PC and ACP and the best ways to engage the public in open discussions.

The study explored the data through a SEM lens to provide a holistic framework for understanding the influences surrounding health behaviour change in relation to palliative care and advance care planning by mapping the findings to each of the SEM constructs.

The SEM for public health was conceptualised by McLeroy et al. [ 20 ]., and was based on previous work by Bronfenbrenner’s ecological systems theory [ 21 ]. The SEM looks to identify social-level determinants of health behaviours [ 22 ]. Five factor levels have been identified within the SEM; (1) Intrapersonal factors (2) Interpersonal processes (3) Institutional factors (4) Community factors and (5) Public policy [ 20 ]. In short, the SEM suggests that the social factors that influence health behaviours on an individual level are nestled within a wider complex system of higher levels. Current research literature has explored SEM as a model for understanding barriers and facilitators to the delivery of PC, adults’ preferences for EOL care and older adults’ knowledge and attitudes of ACP within differing socioeconomic backgrounds [ 23 , 24 , 25 ]. It has demonstrated the importance of a multilevel approach within these populations. However, there is a scarcity of research exploring strategies for public engagement with PC and/or ACP which are underpinned by SEM theory.

To ensure rigour in the analysis four members of the research team (RB, SM, FH, EB) independently reviewed the transcripts and were involved in the analysis and development of themes as a method of confirmability [ 26 ].

Ethical approval was gained from the University Research Ethics Filter Committee prior to commencing data collection. Participants provided written informed consent prior to the commencement of the interviews. They were advised of their right to withdraw, and the confidentiality and anonymity of all data were confirmed. All data was kept in accordance with the Data Protection Act (2018) [ 27 ].

All participants were white; 70% were female (n-19) and 70% were either married or cohabiting (n-19). The largest proportion of the sample 44% was aged under 50 years (n-12), with 22% aged between 50 and 59 (n-6) and 33% (n-9) aged between 60 and 84. Over half of the sample was employed (n-15), 15% were self-employed [ 4 ] whilst 26% were retired (n-7). Demographic data were missing for one of the included participants (see Table 2 ).

Responses to questions relating to ACP knowledge and behaviours found just 12 participants had heard of the term ACP prior to completing the Northern Ireland Life and Times Survey. Furthermore, none of the participants had been offered the opportunity to discuss ACP and none had prepared a plan of their wishes and preferences.

Main findings

Three overarching themes were generated from the data: ‘Visibility and relatability’; ‘Embedding opportunities for engagement into everyday life’; ‘Societal and cultural barriers. These findings were then mapped to the five social ecological model (SEM) levels ( individual; interpersonal; institutional; community; and policy ) to demonstrate the importance of a multilevel approach when seeking to engage the public around PC and ACP. See Fig. 1 for SEM construct mapping.

Theme 1: visibility and relatability

This theme relates to the suggestion that social taboo was a barrier to awareness and the mechanism to ameliorate this was visibility – in turn promoting reduction of stereotypes and promoting understanding and engagement. This posits the idea that the lack of understanding of PC is the root cause of much of the stigma surrounding it. The SEM construct mapping suggests a multilevel approach is required with intrapersonal (increased individual understanding), interpersonal (openness in discussion with friends and family through media normalisation) and institutional (health service policies for promotion and support) levels being identified.

Participants discussed how there is a lack of knowledge on what PC is, with many assuming that it was for people in the latter stages of life or facing end of life care. This highlighted the lack of individual education with participants suggesting that there should be more visibility and promotion on PC and ACP so that individuals are better informed.

“So, it’s really um there needs to be more education, maybe, I think around it. So that people can view it maybe differently or you know talk about it a bit more. Yeah, probably demystifying what it is. This is this is what it is. This isn’t what it is. You know, this isn’t about um, ending your life for you, you know. And this is about giving you choices and ensuring that you know, you know people are here looking after you”(P37538F45) .

However, there was a recognition that individual differences play a part in whether people engage in discussions. A number of participants explored the idea that some people just don’t want to talk about death and that for some it was not a subject that they want to approach. Despite this, there was a sense that increasing visibility was considered important as there will still be many people who are willing to increase their knowledge and understanding of PC and ACP.

“I can talk about it, for example, with one of my sisters, but not with my mom and not with my other sister or my brothers. They just refuse point blank to talk about it…. some of them have done and the others have started crying and just shut me. Shut me off. And just. No, we don’t want to talk about that. So, it just depends on the personality, I suppose” (P14876F59) .

The lack of knowledge and awareness of PC and ACP was suggested to be the attributed to the scarcity of information being made available at a more institutional level. For some participant’s, this was felt to be the responsibility of the health service to ensure the knowledge is out there and being promoted.

“I think people are naive and they know they’re not at that stage and they don’t know what palliative care is, you know. It’s all like it’s ignorance. But our health service is not promoting this. Well in my eyes, they’re not promoting it whatsoever. And they should, they should, because it would help a hell of a lot of people ” (P37172M61). “I and I think it needs to be promoted by the point of contact, whether it’s a GP, National Health, whatever it might be, I think when they’re there, there needs to be a bit more encouragement to have that conversation” (P26495M43) .

The lack of visibility within the general practice was discussed by several participants who said that leaflets and posters would be helpful in increasing visibility. One participant went as far as to say that a member of staff within a GP surgery would be beneficial.

“I suppose the palliative care because it is a bit more personal. There should be even maybe a professional that you could talk to in your GP practice, or you know, like they have mental health practitioners now in GP practices. Maybe there are I don’t know if there is or not, but there should be maybe a palliative health practitioner that talks to people when they are at that stage of their life” (P21647F29).

Participants also noted how there were generational differences in how people accessed health information. Many of the participants suggested that they would turn to the internet and ‘google’ for information, however, the suggestion was made that care should be taken to target awareness campaigns to different age groups via different methods to reduce disparities in technology skills such as those with less computer literacy.

“ I think a certain proportion of society need the visibility because they’re not always going to be self-sufficient enough to jump on the Internet even though you know we’re getting to the point now where the generational thing is. The generation have been brought up with the Internet and they’re obviously they go to it as the first point of call. But we still got the generation at the moment that don’t”. (P25046F-)

One of the participants talked about ways to increase visibility via the use of the media, including social media, and the utilisation of famous faces.

“Yeah, I think you know, they need to discuss it on Loose Women. You know, morning TV need to get on the bandwagon….But you know. It only takes like that one celebrity to mention it and then the whole media is jumping on the bandwagon.” (P19874F-) .

The UK media coverage of other successful campaigns such as those highlighting mental health and bowel cancer were noted to have been particularly helpful in raising awareness.

“if I think myself about the whole exposure that we have and as a society at the minute about mental health in general, you know a lot of the work on that has been done via social media. You know, celebrities hash tagging and talked about their experience. It’s OK to not be OK etcetera. And I feel like that is responsible for a lot of people who are now discussing their mental health” (P21647F29) .

The sentiment expressed in the above quotes regarding increased visibility in the media also suggests that unless a topic seems relevant to an individual then they won’t engage with health promotion. This concept of relatability pertains to those aspects of human empathy where they can place themselves within a situation leading it to become more relevant to them.

Many participants discussed that using real-life stories on television and in campaigns would be an effective way to connect with the public and it would make PC and ACP more relatable and highlight the importance of thinking about it.

“I think always what tends to be most effective is when it’s somebody that we could all relate to telling their own story (…)……I’m not too sure I know enough about what it involves, but really, like the consequences, that the consequences that people have suffered from not having done that. Not knowing what the wishes were, not having planned for it”. (P32288F62)

Several participants discussed how the topics of PC and ACP were not something they would identify with as being relevant to them. The suggestion was that without it being an immediate concern, for example, if they were not approaching a certain age, then they would assume that they did not need to increase their knowledge about what PC or ACP involves.

“You have to be able to relate to it in order to think, oh, yeah, that applies to me. You need to have something in which you identify with”. (P13697F51)

Theme 2: embedding opportunities for engagement into everyday life

Throughout the discussions, there was evidence that participants felt that death literacy could be increased by providing more opportunities to gain knowledge about planning for future care and what PC involves. Education was highlighted as a potential pathway to engaging the public by targeting appropriate age groups and professions with relevant knowledge and skills. For some, this was thought to be best achieved through educating the youth and for others, the importance of educating those who are working in the healthcare profession was particularly salient. In addition, almost half of the participants suggested they would approach charity organisations for information, with participants advocating for education within secondary and tertiary levels and within community organisations. This data reflects an institutional-level construct within the SEM framework.

Educating younger generations on the topics of PC and ACP through open discussions in schools, and providing skills on how to have difficult conversations with loved ones were seen to be a valuable strategies.

“ young people don’t have that ability to accept and admit and bring it out into the open and I think they need to be perhaps encouraged more to do that through some kind of teaching in the school environment when they’re at a young and impressionable age ”. (P25046F-)

Due to the difficulties around having conversations about death, it was suggested that different healthcare professionals should be trained to have conversations with their patients.

“Yeah, it’s like you think the discussions are difficult to broach for maybe health care professionals that you know, a difficult topic even for them to bring up. Well, if you’re working with someone who’s you know with a family and where things are quite distressed and very often it can be either, it can be the stress can cause a lot of friction and you know, decision making can be very difficult for people…., but just at every level, there’s, you know, possibility to be having conversations like that with people.”(P37538F45) . “I suppose you could think about training some care professionals (…) there may be some way that as a second part of the person’s job or whatever that they’re trained so that people could go along and discuss ” (P19265F76) .

Further to education for young people and healthcare professionals, there was the recognition that community organisations are perfectly positioned to educate the public in PC and ACP. One participant highlighted the missed opportunity to educate family members and carers through an existing programme on dementia. This is particularly pertinent to ACP due to the impact of cognitive decline on decision-making.

“I went to zoom meetings for four weeks in a row with the Alzheimer’s Society. Umm regarding things to do with dementia. And you know, there was a week about your finances and things like that. I suppose. They never really talked about end of life care you know that sort of thing. Um I suppose it would have been useful had they you know, broached that subject as well. But it wasn’t, you know, there was more about looking after yourself, looking after the person. The symptoms of dementia and all this sort of thing, Alzheimer’s and then you know, um the financial and the help available to you. You know, but they didn’t mention about the end-of-life care and like the end result of dementia, I guess, is death. So, you know that that subject, you know, I was, I suppose to just those organizations that deal with um the issues of, like dementia or, as you say, all the rest for, you know, the rest of the diseases and that. You know to be up front and honest and say you know where this can lead and to make people you know, make people aware that there is a palliative care process that can be gone through.” (P19874F-) .

Furthermore, the option of a helpline was suggested with reference made to other successful charity helplines such as the National Society for the Prevention of Cruelty to Children (NSPCC) and The Samaritans. Whilst it was acknowledged there were specialist support services available for people living with a terminal diagnosis, there was a sense that a generic information support helpline would be helpful.

“You know, people need to be (aware)… they’re not alone. There is help out there. You know, you see your helpline, your children, NSPCC, your Samaritans. All on all these helplines, I have to think, I’ve never seen a helpline for palliative care or who you can contact. You don’t see things like that.” (P22964F52) .

In addition to education, the suggestion that embedding ACP discussions into other more common aspects of future planning such as will making, and organ donation was postulated as a potential way to engage the public. This demonstrated clear links to the policy and institutional level constructs within SEM. Changes within organisational policies and public law to support individuals to consider future planning would promote better engagement on a wider societal level.

Participants suggested that they would like to see some of the conversations surrounding ACP introduced into workplace policies and guidelines, as well as through other legal discussions. They noted that conversations surrounding future planning already occur when discussing legal wills and workplace pensions. The potential to expand these discussions to include ACP with solicitors and in workplaces was seen to be a missed opportunity.

“So maybe um around people who are making their wills and you know, you get will making services advertised and things like that. And I think once you get into your 30s and 40s, people start thinking about a will and things like that. So maybe aligned to something like that, you know would get younger people.” (P13790F67) . “when people talk about the pension, you know so retirement, you know, to make people aware about this as well. You know, I would say that’s probably good ways to reach people” (P21263M54) .

Current legislation and promotion regarding organ donation were discussed as being successful in engaging the public and therefore implied that the government should take a more active role in the promotion of ACP.

“If you look at the way, sort of, government have been promoting like organ donation and that. You know that sort of thing. And then people have really bought into it and you know, and there’s a lot of positivity around it. So, I think that’s sort of similar approach would be good”. (P29453F40) “You know, people talking about pension, pension plans and so on and it’s part of the natural life circle, you know. So, if it’s in connection with this, you know, so think about your future, make your plans …so probably in connection with organ donation and so on, you know, so I think they could be trigger points, you know,, people talking about this.” (P21263M54) .

Theme 3: societal and cultural barriers to open discussion

In conversations surrounding why there was a lack of openness in discussion, participants postulated that a potential factor was the influence of cultural and societal norms. This was found to overlap in the SEM levels of intrapersonal, interpersonal and community.

Rural farming communities were highlighted as potentially being more isolated and traditional in their views around death and dying, whilst those with strong religious beliefs were seen to be less likely to engage in discussions.

“You know, and there is a, I’m out in the countryside. Well, it’s (place name). So it’s a relatively rural sort of conservative place and it and it’s that… you know you’re tied to the land, you’re tied to the farm. This is your home and sending you away from it early it is seen as a bit of a shameful thing. So yeah, to try and educate folk and to try and speak into that I think would be really helpful because again, I’ve seen situations where probably the individual’s life, the end of life, has been made tougher because the family have fought to keep that person at home.…. We’re going to try and do it ourselves” (P26495M43) . “I think it’s probably a lot to do with religion more than likely because people just like to hear, because we still are very much, you know, a lot is dictated by religion. So, people just want to leave stuff in God’s hands so they don’t want to have like…that would be the kind of where my mom and dad are coming from, you know, don’t interfere with it, blah blah blah. So, it’s a very gentle like kind of reminding them, you know, well, I think we do need to think about it. And I think people are afraid that they’ll make again that um it’s kind of euthanasia you know what I mean” (P37538F45) .

Cultural differences between countries were also considered with some seeing other global communities approaching death as a celebration rather than something to shy away from.

“I think in Northern Ireland we are, and the UK and probably the world in general. We are really poor at talking about, about death, and it has to be a positive thing to be able to talk more about death. You look at other cultures where you know. Death is treated differently, you know, even in Africa things where, you know, it’s a real celebration, whereas it’s seen so differently in in Northern Ireland” (P31154F35) .

Furthermore, regions and countries that have experienced war and conflict were perceived by one participant as a potential barrier to engaging in subject matters which involve death.

“I don’t I don’t know about other countries, but those that grew up maybe during the conflict here, maybe it’s just something that, you know it’s it’s a completely different mindset to them” (P23609M39) .

Whilst it is unclear from the data why the participant felt the conflict might inhibit engagement with the subject of dying, it could be interpreted that the participant was suggesting that death is too morbid to engage with following a conflict period which saw numerous deaths. An alternative interpretation could be that people are desensitised to death and do not see death as something that an individual has autonomy over.

It was noted that in many modern societies communities are changing. People no longer interact with their neighbours in the way they used to which results in a reduced sense of community responsibility.

“I don’t know that everyone is as neighbourly as they used to be. Northern Ireland I always perceived as being open door policy and everybody looked out for everyone else. But I think as a society has changed and it has changed in Northern Ireland, and it’s become becoming more closed (…) So I think we need to try and encourage that community um experience back again so that people are mindful of their neighbours and share that responsibility and making sure that everyone’s OK” (P25046F) .

This sense of social isolation was discussed by one participant who referred to homeless people. They reflected on how current social structures may not be providing the information and support to this minority group and therefore should be considered when developing public health approaches to engaging them in PC and ACP education.

“And if you look at homeless people on the streets, where do they get the information from? Where do they get the care, the information, the attention. I know there are Street workers that work, but I don’t know again to what extent in Northern Ireland compared with the likes of London” (P25046F) .

Mapping the findings to a social ecological model framework

Following thematic analysis each of the resulting themes were mapped to the five socioecological levels identified by McLeroy et al. (1988) for health promotion programmes. Construct mapping can be found in Fig. 1 below.

Thematic interaction within the Social Ecological Model levels

The findings from this study highlight the complexity of current public perceptions of palliative care and their views on effective engagement with PC and ACP. Within medicalised western culture there is a tendency to focus on the preservation of life, with conversations about death avoided. This has resulted in death becoming a taboo, raising fear and stigma where death is equated with failure. These social taboos that exist around death, dying and bereavement are posited to stem from the lack of awareness and understanding of PC and ACP and the resulting stigma of approaching these discussions. There was evidence of influencing factors on all SEM levels, which demonstrates the need for a multifaceted public health approach that uses not only behaviour change communication but also social change communication, social mobilisation and advocacy. It can be argued this reflects the key aspects outlined in Lancet Commission report on ‘Valuing Death’, which advocated for a ‘systems approach’ [ 10 ]. This systems approach is aligned to differing levels within the SEM and the different approaches the public have identified when seeking to build public engagement and access to palliative care. Three key aspects were noted: visibility, embedding opportunities for engagement in everyday life and societal and cultural influences.

It was clear from the analysis that a major factor associated with poor public engagement was the lack of visibility within the public domain, which was hindering both the normalisation of death and understanding that PC was more than just end of life care. The findings demonstrated different ways to address the lack of visibility, such as the use of targeted social media and wider publicity campaigns. Research to date has demonstrated that palliative care education is a useful tool in improving knowledge of, confidence in and attitudes towards palliative care amongst healthcare professionals and carers [ 14 ]. Similar results have been noted for the public when exploring the potential to promote palliative care through various media challenges such as YouTube and social media [ 28 ]. This does, however, raise questions around the quality and accuracy of information offered via the media, taking cognisance of whether some of the messaging may inadvertently be adding to misunderstanding, and thus a lack of public engagement.

Secondly, the findings indicated that experience at the individual level within a social context was noted as an important element when seeking ways to increase public engagement with PC and ACP. The experience of illness, dying and loss is often overlooked, therefore, this points to the potential value of community-based education approaches, with peers enabling experience-based exchange. Such interventions have been noted in the literature on the role of volunteers and education [ 29 ]. This reflects the need for an overall public health palliative care approach that seeks to empower individuals, families and communities to draw on their own resources and community supports to adapt and cope with death and dying [ 6 , 30 ].

Thirdly, the findings from this study indicated the need for enhancing opportunities for engagement in PC and ACP within everyday life. Research indicates there is an appetite for people to talk about death, for example, in the UK, a recent YouGov ‘daily question’ survey reported 67% of adults who responded think the subject of death and dying should be talked about in schools [ 31 ]. This speaks to the need to consider schools, workplaces and key trigger points in life as times to consider engagement with PC and ACP. This reflects the overall need for death literacy in society to improve experiences at the end of life [ 10 ].

Finally, the importance of socio-cultural aspects for the public cannot be underestimated. Therefore, effective communication strategies need to be tailored to individuals, and communities and be culturally appropriate. This has been noted as an important aspect for specific communities, such as the Chinese diaspora, for example, but nuances around this for specific ethnic, political, religious, and geographical aspects need further consideration [ 32 ]. Cultural competence, defined as an understanding of how culture affects an individual’s beliefs, values and behaviour, is an important consideration [ 33 ]. A meta-analysis of 19 review articles, concluded that interventions to increase cultural competence in healthcare were effective in enhancing the knowledge, skills and attitudes of healthcare providers, leading to clinical benefits for patients/clients through improved access and utilization of healthcare [ 34 ]. The translation of such reviews for public engagement in PC and ACP warrants further exploration. It has been advocated that elements of cultural systems should be analysed with a socio-ecological framework [ 35 ]. Such consideration and integration of salient contextual cultural factors could assist public messaging and cultural communication, which would enhance more effective and sustainable public engagement in PC and ACP.

Limitations

When considering potential limitations, it is pertinent to note that due to the sensitive nature of the topic the exclusion criteria restricted the sample to those who had not experienced a recent bereavement. This may have limited the ability to gain a wider perspective, as the views of the recently bereaved may have provided further nuanced insights into how best to engage the public. Furthermore, the participant sample was limited to those involved in a larger mixed-methods study. This may have introduced bias in relation to true knowledge and attitudes due to the participants having completed the survey questionnaire prior to the interviews.

In conclusion, this qualitative study has provided insights into how the public would like to be engaged in PC and ACP. The findings highlighted that to build public engagement and access to palliative care and advance care planning a multifaceted public health approach is required. Discussions of death and dying remain difficult for many members of society, therefore, an increase in death literacy across all systems to reduce misperceptions surrounding PC and APC is needed, by increasing visibility and providing opportunities for the public to engage with PC and ACP within everyday life. Finally, socio-cultural aspects need consideration when developing strategies to ensure effective communication and engagement with all members of the community.

Data availability

The datasets analysed are not publicly available but are available from the corresponding author upon reasonable request.

Abbreviations

Advance care plan

Palliative care

Palliative care education

Social ecological model

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Acknowledgements

The authors would like to thank all interviewees for their participation in the research.

This study was funded by HSC R&D Division of Public Health Agency in Northern Ireland.

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SMcI is principal investigator responsible for study design, project management, analysis and manuscript review and dissemination. FH, PS, EB were responsible for study design, analysis, manuscript review and dissemination. RB was responsible for qualitative data collection, analysis, manuscript drafting and dissemination. All authors reviewed and approved the final manuscript.

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Black, R., Hasson, F., Slater, P. et al. Building public engagement and access to palliative care and advance care planning: a qualitative study. BMC Palliat Care 23 , 98 (2024). https://doi.org/10.1186/s12904-024-01420-8

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Transformational nurse leadership attributes in German hospitals pursuing organization-wide change via Magnet® or Pathway® principles: results from a qualitative study

Joan Kleine ORCID: orcid.org/0009-0005-1727-3683 1 ,
Julia Köppen ORCID: orcid.org/0000-0001-7941-641X 1 , 2 ,
Carolin Gurisch ORCID: orcid.org/0009-0008-3763-7220 3 &
Claudia B. Maier ORCID: orcid.org/0000-0002-7734-2258 2

BMC Health Services Research volume 24 , Article number: 440 ( 2024 ) Cite this article

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Metrics details

Budget constraints, staff shortages and high workloads pose challenges for German hospitals. Magnet® and Pathway® are concepts for implementing organization-wide change and redesigning work environments. There is limited research on the key elements that characterize nurse leaders driving the implementation of Magnet®/Pathway® principles outside the U.S. We explored the key attributes of nurse leaders driving organization-wide change through Magnet®/Pathway® principles in German hospitals.

Using a qualitative study design, semi-structured interviews ( n = 18) were conducted with nurse leaders, managers, and clinicians, in five German hospitals known as having started implementing Magnet® or Pathway® principles. The interviews were recorded and transcribed verbatim. Data were analyzed in Atlas.ti using content analysis. For the analysis, a category system was created using a deductive-inductive approach.

Five leadership attributes and eleven sub-attributes were identified as main themes and sub-themes: Visionary leaders who possess and communicate a strong vision and serve as role models to inspire change. Strategic leaders who focus on strategic planning and securing top management support. Supportive leaders who empower, emphasizing employee motivation, individualized support, and team collaboration. Stamina highlights courage, assertiveness, and resilience in the face of challenges. Finally, agility which addresses a leader’s presence, accessibility, and rapid responsiveness, fostering adaptability.

Conclusions

The study demonstrates leadership attributes explicitly focusing on instigating and driving organization-wide change through Magnet®/Pathway® principles in five German hospitals. The findings suggest a need for comprehensive preparation and ongoing development of nurse leaders aimed at establishing and sustaining a positive hospital work environment.

Peer Review reports

European hospitals are facing multiple challenges, including economic pressure, cost containment strategies, technological advancements, and shortages of healthcare professionals, which require constant adaptation [ 1 , 2 , 3 , 4 ]. Particularly concerning is the high burden of mental distress reported by nurses and other healthcare professionals [ 5 , 6 ]. It is increasingly recognized that the root causes of increased stress and burnout among nurses are linked to the work environment in hospitals and other healthcare settings, that is why hospitals should strive to change their working conditions [ 7 , 8 ].

The Magnet Recognition Program® (Magnet) and the Pathway to Excellence® Program (Pathway), both originating in the United States (U.S.) and held at the American Nurses Credentialing Center (ANCC), are designed to facilitate organizational-wide change of work environments, enhancing employee well-being, retention, productivity, and patient outcomes [ 9 , 10 , 11 ]. These concepts can provide a structured approach for European hospitals to tackle the challenges of the future effectively.

Research on Magnet hospitals, primarily conducted in the U.S., suggests that Magnet can enhance working conditions, job satisfaction, and nurse well-being in hospitals [ 12 , 13 , 14 , 15 ], while also improving patient outcomes [ 14 , 15 , 16 ]. However, findings across studies and outcomes vary. In contrast, the impact of Pathway has received less attention in research. Nevertheless, some studies have indicated that Pathway promotes increased nurse autonomy and decision-making authority, fosters leadership development, improves safety and quality standards, enhances employee well-being, and supports professional growth [ 17 , 18 ].

As of December 2023, 591 organizations worldwide had Magnet designation [ 19 ], and 214 had Pathway designation [ 20 ], with the majority in the U.S. Internationally, only 17 hospitals hold Magnet designation [ 19 ] and 16 have Pathway designation [ 20 ]. While none of them are in Germany, some German hospitals have proactively started implementing Magnet/Pathway principles to drive organization-wide changes aiming at enhancing job satisfaction, attracting and retaining healthcare professionals [ 21 , 22 , 23 , 24 ]. Hence, the inclusion of Magnet and Pathway principles as comparable case examples of organization-wide change in the current study is justified by the growing proactive adoption of these concepts by some German hospitals.

Magnet and Pathway focus on promoting nurse engagement and supporting professional nursing practice environments. The difference lies in their specific objectives: Magnet emphasizes sustained quality patient care, nursing excellence, and innovations in professional practice, while Pathway highlights creating supportive practice environments that empower and engage staff and is known for having less stringent data requirements [ 25 , 26 ]. However, both aim to cultivate a culture of nursing care excellence, supported by a transformational leadership style [ 25 ], which is the central focus of the present study.

Leadership skills do play a crucial role in successfully promoting organization-wide change [ 27 , 28 , 29 ] and has also been shown to have a profound impact on employee stress and emotional well-being [ 30 ]. Transformational leadership was identified as one effective leadership style in healthcare settings [ 29 , 31 , 32 , 33 ]. Transformational leaders motivate employees towards an organizational vision by inspiring and empowering them to continuously develop themselves and addressing their individual needs [ 34 , 35 ]. The theoretical framework for transformational leadership was first conceptualized in the 1970s, defining it as a relationship between leaders and employees who motivate, empower, and elevate each other’s moral values in pursuit of fulfilling common interests [ 36 ]. Further expansion by Bass and Avolio introduced four subcategories that represent the characteristics of transformational leaders: Idealized influence, inspirational motivation, intellectual stimulation, and individualized consideration [ 34 , 35 ].

Several U.S. studies have analyzed the relationship between transformational leadership and the implementation of Magnet principles [ 37 , 38 , 39 ]. In a southern U.S. nonprofit acute care hospital seeking Magnet designation, a survey of 115 staff nurses showed that transformational leadership style was positively associated with nurses’ job satisfaction and satisfaction with promotion opportunities [ 37 ]. Magnet hospital CNOs rated their transformational leadership practices highly and reported a strong positive correlation between engagement and leadership practice, with empowering others as the most important practice [ 38 ]. A study of clinical nurse leaders, who attended the 2016 Magnet Conference in Orlando, Florida, showed a positive relationship between transformational leadership practices and work engagement, but observed differences in leadership practices and work engagement based on varying levels of education [ 39 ].

The majority of research conducted outside of the U.S. has focused on investigating the impact of transformational leadership style within healthcare settings, with no focus on the implementation of Magnet/Pathway [ 29 , 31 , 32 , 33 , 37 , 40 , 41 , 42 , 43 , 44 , 45 ]. Several studies found that forms of transformational leadership styles resulted in positive organizational performance, such as improved staff retention, lower turnover, and better quality of care [ 31 , 32 , 33 , 37 , 40 , 41 ]. A systematic review including 12 studies from the US, Canada, Saudi Arabia, China, Ethiopia, Italy, and Jordan, showed a positive correlation between transformational leadership and nurses’ job satisfaction in the hospital setting [ 29 ].

To date, most of the qualitative studies analyzed transformational leadership style from the nurse leaders’ perspective. A study from Finland used a qualitative design to examine nurses’ leadership skills in leading change [ 44 ]. They identified three main roles: First, ‘leading interpersonal relationships’ including competencies of being a team player, coach, and parental figure. Second, ‘leading processes’ including competencies such as organizing, coordinating, and being a conductor based on the organization’s mission. And third, ‘leading a culture’ is defined as advocating values and norms and creating an open, resilient, and evidence-based culture [ibid.]. Another study from 2016 explored senior nurses’ experiences of organization-wide change leadership in three NHS acute hospitals in England through in-depth interviews [ 43 ]. The aspect of leadership was frequently discussed in relation to organization-wide change. An effective nurse leader was characterized as a strong, inspiring, and supportive leader with novel and heroic approaches [ibid.]. Weak leaders were those who did not encourage their teams, had poor presence and were unresponsive to the need for change [ibid]. Another qualitative study used a grounded theory approach to examine the processes nursing management uses to promote change on their wards in five hospitals in Japan [ 45 ]. According to the interviewees, the change management process led by nurse managers consists of having beliefs and being able to empathize with the nursing staff to achieve common goals [ibid.]. Four characteristics of nurse leaders were reported as indispensable factors for change: having both a micro and macro perspective; respecting their own beliefs and external standards; being proactive; having empathy for nursing staff [ibid.]. A 2020 study conducted in a university hospital in Brazil, examined the challenges of exercising transformational leadership and strategies nurses leaders used to address these challenges include being role models for the team, proactively maintaining dialogue with co-workers, and building empathetic relationships [ 42 ].

In German hospitals, a cross-sectional study investigated nursing leadership styles, analyzing the self-assessment of 93 ward managers and the external evaluation of 1,567 employees with the multifactorial leadership questionnaire (MLQ-5X), revealing the presence of transformational leadership practices [ 46 ]. The ward management consistently achieved mean values above the scale mean in all dimensions of transformational leadership, both in the self-assessment and in the external evaluation [ibid.]. However, despite the acknowledged existence of transformational leadership practices in nursing within German hospitals, research on the attributes of nurse leaders that support organization-wide change through implementation of Magnet/Pathway principles remains scarce. This study aims to identify beneficial attributes of nurse leaders from German hospitals, shedding light on their role in driving organization-wide change through Magnet/Pathway and advancing the understanding of leadership practices’ impact within the German healthcare systems. Research on this topic is critical to fill a gap in the literature regarding nurse leader attributes that facilitate organization-wide change and can provides insights that could inform nursing leadership development initiatives tailored to the needs of German hospitals seeking Magnet/Pathway designation.

Design and setting

This study was conducted as part of the German Magnet pioneer study, based on a qualitative research design in five pioneer hospitals. Semi-structured interviews were conducted between March and October 2020 with nurse leaders, managers, and clinicians involved in introducing Magnet or Pathway principles in five German hospitals. Inclusion criteria were as follows: (i) hospitals known as pioneers, defined as early adopters of the Magnet or Pathway principles, (ii) having started the implementation on their own initiative prior to 2020. For the purposes of this study, the primary focus was on the leadership attributes of nurses driving organization-wide change using Magnet/Pathway principles. The research protocol was approved by the Ethics Committee of the Charité (No. EA4/185/19). This study used the consolidated qualitative research reporting criteria (COREQ) [ 47 ].

The semi-structured interview guide contained a total of nine question with a set of probing questions. Topics covered motivation and rationale for implementing Magnet/Pathway, the identification of facilitators and barriers, of which one question was specifically on the role of leadership. However, interviewees referred to leadership attributes and practices throughout the interview in various instances. All interviewees filled out a short questionnaire on demographic characteristics and information about their role in the hospital, position, and years of work experience.

Sample recruitment

The purposive sample consisted of 18 persons from the five hospitals. Hospital size ranged between 200 and 2000 beds. Interviewees were nurse leaders, managers, and clinicians who had gained experience with the implementation of Magnet/Pathway. All requested interview partners agreed to be interviewed.

Data collection and analysis

Interviews were conducted in German and face-to-face by three members of the research team, following the semi-structured interview guide. The interviews lasted between 30 and 135 min. The interviews were anonymized and transcribed verbatim and were coded with ID01-ID18. The analysis of the anonymized transcripts was carried out in a multi-stage procedure based on content analysis, with a content structuring and summarising approach according to Mayring [ 48 ].

A deductive-inductive approach was chosen. The transcripts were coded using the data analysis software ATLAS.ti. For the deductive coding a coding guide was developed prior to the analysis based on the five components of the Magnet model [ 10 ]. Subsequently, the content of the deductive code leadership was re-analyzed in-depth inductively to answer the research question.

Several measures were applied to ensure transparency and quality. This involved investigator triangulation whereby the three researchers were involved in the data collection, analysis, and interpretation of the study [ 49 ].

Prior to the interviews, the three researchers conducted pilot interviews among themselves to ensure consistency. The coding of the interviews was performed by the three researchers who also conducted the interviews. Each coder was familiar with all 18 transcripts. After a pilot analysis phase with three interviews which were coded together and discussed at length to achieve high interrater agreement, the transcripts were randomly allocated. In regularly scheduled meetings, the coders reported the interim status and discussed problems or questions regarding the analysis and reviewed sample content of the codes together. In the next step, themes and sub-themes were formed by the researchers and discussed. Examples of quotes from interviewees are provided in the results section to enhance understanding of the interpretation of the results.

Interviewee characteristics

The 18 interviewees had a mean age of 48.9 (SD: 10.0) years, seven were female and eleven male. The majority ( n = 16) had a degree in nursing and two a degree in medicine. Leadership and/or staff responsibilities had 17 interviewees and on average they had five (SD: 2.8) years of experience with implementing Magnet/Pathway (see Table 1 ).

All 18 transcripts were included in the analysis, regardless of whether direct quotes are shown in this study. Five main leadership attributes (subsequently referred to as main themes) driving organization-wide change using the Magnet/Pathway principles were identified: visionary, strategic, supportive, stamina, and agility. The main themes consist of eleven sub-themes (see Table 2 ).

Main theme 1: Visionary

Two sub-themes were clustered as the main theme visionary. It emerged that having a vision and acting as a role model were identified as requirement to implement organization-wide change.

Having a vision

Most interviewees agreed that leaders need a vision that they carry with conviction and strive to realize with high motivation. Interviewees suggested that a leader who is visionary would inspire employees for the change process. Furthermore, some interviewees mentioned that it is beneficial if leaders communicate well their vision of the future to their employees.

“With a vision I can inspire people. So, I need something that is strong enough, that really radiates energy, that […] gives people courage.” (ID9) .

It was seen as essential that the visions should be catchy, based on clinical practice and reflect the needs of clinical practitioners. One of the interviewees also mentioned the involvement of employees in the practical elaboration of the vision.

“So, I […] presented the vision to my team. […] And we went into working groups on how we can implement it, how we can live it. We have three keywords in there: human, competent, pioneering.” (ID14) .

The interviewees described the need for people who serve as role models that adhere to their vision, ideals, and values and stand up for them. Leaders acting as role models were identified as being less concerned with fulfilling specific criteria for maintaining a label or certificate but focused on improving the well-being of employees and quality of care. Interviewees explained a role model function of leaders as beneficial when employees could identify with their leaders, as this makes it easier to formulate and accept the vision and values as common goals. One interviewee stressed the importance of the personality of the leader and their manner of communicating with their staff.

“I would almost reduce it to the personalities that drive the whole thing. So, it always depends on how you transmit something, how do you communicate, how do you deal with your staff.” (ID4) .

A role model as an inspiration was suggested to increase the motivation of the employees to develop themselves and eventually to work towards the achievement of common goals.

“For me it was […] exciting to have a nursing director who brought special knowledge and an enthusiasm that I sometimes missed in the nursing field. […] just ahead of the times and […] powerful with motivation and of course that caught me.” (ID2) .

Main theme 2: Strategic

Two sub-themes were identified under the main theme strategic: Critical attributes as strategic planning and convincing top management contribute to effective implementation of positive change.

Strategic planning

Interviewees mentioned that leadership attributes included the ability to plan strategically to meet the goals of the hospital. For example, one of the interviewees described that the implementation of transformational leadership had been the key to driving further changes in the direction of Magnet.

“I think that the key component to live the Magnet concept is transformational leadership. […] I first must manage through leadership to keep people and attract new ones. And if that succeeds, […] then I can bring the other components into life […].” (ID9) .

Some interviewees highlighted the relevance of strategic resource allocation to be able to initiate and sustain the hospital-wide change via Magnet/Pathway principles. This included investing in human resources, e.g. nursing scientists or project coordinators, and in structural development, e.g. data management or digitalization. One interviewee described the strategy of providing budget or other cost-related information for the top management and the board required for Magnet/Pathway implementation.

“There needs to be at least […] an overarching Magnet project manager or director. […] last year I made an initial rough calculation for the board […] as a template, what it would cost the hospital. […] because that is of course indispensable.” (ID7) .

Convincing top management

Most interviewees addressed the importance of seeking and gaining the support of top management to advance change processes.

“The first step, […], was to convince the executive director, because the combination is simply necessary to do anything at all.” (ID4) .

One interviewee underscored the importance of active involvement and dedication from top-level decision makers and management in driving organization-wide change processes.

“So, I think you definitely need […] - the decision makers, the management - they must commit themselves clearly to it, and they must have a vision in this direction […].” (ID5) .

Main theme 3: Supportive

Three sub-themes were clustered under the main theme supportive. To be a supportive leader who fosters an empowering workplace to meet Magnet/Pathway principles, it was described as important to inspire and motivate employees to evolve professionally, support employees individually in developing themselves and their ideas further and cultivate a strong team spirit as a team player to pursue common goals.

Inspiration and motivation

Some of the interviewees talked about encouraging and inspiring employees to go beyond themselves. Increasing employees’ self-confidence enabled them to make their own decisions and motivated them to evolve professionally. This increased the motivation to drive positive change within the organization. One of the interviewees further explained that the higher the motivation in the team, the faster positive changes could be implemented.

“The half of it is […] that you get moving forward and, of course, the more motivated you are, the faster and the better you get moving forward. So, it’s about strengthening motivation and this for the whole team and making sure that you get better professionally.” (ID2) .

A leader should have a passion for the intended changes to persuade and motivate all employees and should take into account the time component of implementing organization-wide change using the Magnet/Pathway concept.

“And you have to be passionate about the topic, otherwise the concept won’t work either. That takes time at first. And then the biggest task is to get all the employees on board.” (ID4) .

Individual support of employees

The individual support of employees by leaders was recognized as indispensable when it comes to empowering them. According to the interviewees it was important to create a trusting working environment and to make employees feel that they are supported in developing themselves and their ideas further.

“[T]he employees must feel something is getting better for me. Managers are standing up for me, they are behind me. That is what is important for employees.” (ID9) .

However, finding the right support for each employee required individual consultation. Only in this way special circumstances and needs could be considered in a targeted manner. In particular, support for the academic training of bedside nurses is mentioned by interviewees as an example which underscores the significance of management’s role in facilitating and encouraging such endeavors.

“[…] there was […] a young [male nurse] sitting there […] who says, ‘Yeah, did I get this right, you want us all to have academic degrees?’ And he says, ‘Listen, I’m 35, I have three kids, I can’t afford to give up one euro right now at all.’ And [the CNO] understands, of course, there are priorities. But then you must see how you can support someone like that. […] If someone wants the [bachelor in nursing] […] then there is massive support, especially at the management level.” (ID7) .

Team player

The interviewees shared the idea that inspiration, motivation, and support of staff succeed more effectively when leaders are perceived as team players. According to the interviewees, a strong team spirit strengthens motivation to pursue common goals and helps not to give up. It also supports the well-being of all employees in their daily work.

“The team spirit is so important because if you motivate a team, if you win a team, and if you, as the leader of such a team, ensure that people enjoy working together and that the day-to-day problems can be sorted out, and if it says at the top and at the front: We are a team, we do this together, and together we are strong, Then you have already won half of everything that can be won.” (ID2) .

An interviewee at a higher managerial level additionally stated that it is important to always maintain a friendly atmosphere and show appreciation to receive important information about current issues and concerns in the teams. Decisions should not be made alone, but should always be considered with the teams, as they know more about the day-to-day matters of the staff members.

“We have […] a very, very friendly interaction, because I think that they are not my subordinates, they are my ward managers and they are the most important source of work for me, so to speak. Without them, I wouldn’t need to show up here to work, without my ward managers interacting with their teams, knowing exactly what’s going on here right now […], where’s the tension right now? What’s going well right now, what’s not going well right now?” (ID17) .

Main theme 4: Stamina

Two of the sub-themes were clustered as the main theme stamina. It emerged that implementing organization-wide change requires leaders who have strong personalities with courage and assertiveness.

The interviews showed that courage and a willingness to take risks in a context of uncertainty, which requires change, is experienced as a beneficial leader attribute. For the interviewees, courage meant being committed to the community and pursuing a vision and goals and being persistent about them. The step of opting for the implementation of organization-wide change with the Magnet/Pathway is described by some interviewees as a dare and leaders should be prepared for negative effects and to face resistance.

“I would say: Yes, you can always change something. And I didn’t let myself be discouraged […]. Sometimes people have said that we can’t really implement the Magnet concept here. And for me it was always important which ideas from the concept can be implemented and this I want to implement […], but I don’t let that stop me. […] And of course you also need leaders who are strong enough to say: ‘I know, even if it sounds crazy, we’re going in that direction now’.” (ID9) .

Nevertheless, especially in times of nursing shortages and high workload, it was important to have a sense of achievement to summon up courage. One of the CNOs interviewed reported that due to a high number of applicants to study nursing in the interviewee’s initial phase at the hospital, the interviewee had gained the courage to believe in the change concept and continued to pursue the interviewee’s vision despite high workloads and poor moods among the nursing staff and continued to pursue their vision.

“[…] despite reports of work overload, which reached me in droves at that time in my starting phase […], and then I was talking about academic training, actually I almost got a slap in the face, but at the same time [many] applied [to study nursing]. And then that was again the point where I had confidence: ‘You’re sticking to it; you have the courage’.” (ID3) .

Assertiveness

Interviewees agreed that implementing organization-wide change requires a high level of commitment and that leaders should have assertiveness. It was mentioned that it is important to prepare for the long term and to be aware of the length of time required to drive change processes using the Magnet/Pathway concept.

“I think the concepts themselves are very, very complex and take an incredible amount of time to implement. But it is possible. You just need someone who has stamina and who stands there and says, ‘So, and I want this, and this is the way, and this is my way, and I’m going to follow through.‘” (ID14) .

A sufficient individual resilience of leaders in hospitals was described as crucial to be able to overcome past failures, learn from them and stay positive. An interviewee described that initial rejection of new intervention plans by employees was initially perceived as a setback, but the leaders remained strong and learned from it.

“Well, that certainly took its time. [The CNO] came back [from U.S.] to the hospital with lots of new ideas and everyone who hears something new first says: ‘Stop, hold this. […], English words, now we only use English words. What does Magnet mean at all?’ and there was already a lot of distance from the employees […]. But then [the CNO] was able to convince […] at least the mangement level.” (ID4) .

Convincing top management was also described as an endeavor and requires the attributes of assertiveness and courage. One example is to advocate for one’s employees.

“And my job as a CNO, of course, is to fight to make sure that my nurse leaders have the resources, from time, to space, to other things, to be able to do good leadership.” (ID9) .

Main theme 5: Agility

In the context of this study, agility means the ability to adapt flexibly and quickly to changing tasks, circumstances, and demands as well as fostering a sense of team spirit. Two of the sub-themes were clustered as the main theme agility; showing presence and demonstrate well and fast accessibility and responsiveness.

Showing presence

It emerged from the statements of the interviewees that showing presence and direct personal contact of the leaders towards the employees was an important competence to keep up the commitment of the employees for implementing positive change within the hospital.

“Of course, I’m also in favour of the director of nursing not working at the bedside anymore […], but they should also not forget the direct contact to those who do the frontline work.“(ID2) .

With personal presence the leader’s appreciation of frontline workers and the interest in their well-being could become more tangible. It would also be a better way to transmit enthusiasm for the overarching, common goal to employees. Likewise, communication lines would be shortened, and employee concerns and needs could be addressed quicker. One of the interviewees shared a key moment when the CNO introduced himself unannounced at a staff meeting, and this sparked a sense of optimism among the employees.

“And I don’t think there’s ever been anything like this before, where a team meets for a dialogue and all of a sudden the CNO comes in and introduces himself and also says something about his philosophy and how he would like it to be. […] And that was the first jolt, because the employees realized, there’s someone who’s not untouchable, but there’s someone who’s like us.” (ID14) .

Another interviewee stated that they were expected as a nurse leader to know as many of the employees personally as possible. This was an essential factor for equal interaction between the professional groups.

“I know a lot of our nurses […], I know all the academic nurses, […] people expect me to take an interest in them. The whole eye-level system means that you really give everyone a name as well, not just a number anymore.” (ID1) .

One of the interviewees acknowledged that a lack of presence at the frontline work, as well as a lack of interest in the processes by the leader, had negatively impacted the success of implementing change processes.

“He [CNO] wasn’t on the wards; he didn’t see that as his responsibility either. It was more like; he gives the strategy and then the others are supposed to do the implementation. That just didn’t work out well. […] it was certainly a barrier that the [CNO] had little understanding of the daily operational problems. […] It would still have been easier if the employees had experienced him as being a little closer to the employees.” (ID10) .

Accessibility and responsiveness

In addition, interviewees explained that by showing presence outside of their own office, leaders should also cultivate an “open door”-culture and be available to meet with employees at short notice. This includes accessibility via various communication channels but also quick responsiveness.

“My door is open all day. I am not the leader who is available once a year for one hour […], but I am permanently there for dialogue, I do have time.” (ID6) . “We do a topical hour with the nursing directorate where they can come and get in touch with science here. [AND] Cappuccino with the nursing directors; where everyone can come without an appointment and also have individual talks […].” (ID3) .

Another interviewee used a current occurrence to stress the importance of responding to employee requests as soon as possible to keep them motivated.

“Right before you came in, there was a colleague who asked me […] if he could do a work shadowing. Within three minutes he got his answer […]. What use has a rigid structure, if you let someone like him wait for two weeks and say ‘Well, I was overworked’? You have to address these things.” (ID2) .

The findings of this study shed light on the attributes of nurse leaders in German hospitals that drive organization-wide change using Magnet/Pathway, which are aimed at improving employee well-being, productivity, and patient outcomes. A key component of the concepts is the practice of transformational leadership [ 9 ]. The results highlight five main themes that encompass beneficial leadership attributes: visionary, strategic, supportive, stamina, and agility.

The theme of visionary underscores the significance of visionary leadership in driving organization-wide change towards Magnet/Pathway. Having a clear and compelling vision that is communicated effectively to employees emerged as a key factor. The role of leaders as role models who embody vision and values was also emphasized. This aligns with existing literature on transformational leadership, which emphasizes the importance of idealized influence and inspirational motivation [ 34 , 35 ]. Leaders who serve as role models and inspire others create a sense of identification and motivation among employees to work towards common goals.

The theme of strategic highlights the role of strategic planning and resource allocation in Magnet/Pathway implementation. Several studies confirmed that strategic thinkers are among the most effective leaders. People with the ability to think strategically are more likely to ensure the sustainable success of an organization and are better able to put existing strategic plans into execution [ 50 , 51 , 52 , 53 ]. Furthermore, this study emphasizes the importance of leaders advocating for Magnet/Pathway principles to gain the support and commitment of the top management. Convincing the top management was seen as crucial for the success of change efforts.

The supportive theme emphasizes the significance of individualized support for employees’ development and well-being. This includes empowering employees to pursue further education, addressing their unique needs, and fostering a trusting work environment. This study highlights the role of leaders in providing resources and support for academic advancement, which aligns with the Magnet key component on structural empowerment. Furthermore, the importance of team spirit and collaboration was emphasized, echoing the Magnet/Pathway principle of exemplary professional practice and a collaborative work environment. Supportive leaders act as team players and inspire and motivate their staff to perform beyond the norm [ 38 , 54 ]. They support staff nurses to assessing their own performance, working out their goals and defining their responsibilities [ 38 , 43 , 44 ]. As a result, nurse leaders can promote knowledge building, intrinsic motivation and innovative work behavior among nurses [ 54 ].

In the German healthcare system, it is noteworthy that not every nursing director automatically holds a position on the hospital’s executive board, underscoring the importance of engaging top management in organizational change initiatives. Additionally, given that lifelong learning and continuous professional development are not standard practices in nursing in Germany, contrasting with the conditions required for Magnet/Pathway implementation, it highlights the crucial role of CNOs in empowering their staff and fostering a culture of lifelong learning and professional growth.

Results of previous qualitative studies analyzing transformational leadership style from the nurse leaders’ perspective confirm these findings. They include competencies such as a strong, inspiring, and supportive leader with novel approaches. The leaders serve as role models and are able to empathize with nursing staff to achieve common goals [ 42 , 43 , 44 , 45 ]. By cultivating a visionary outlook and a supportive stance, nurse leaders can effectively foster work engagement, address burnout, and create a motivating environment for healthcare professionals. Importantly, these leadership qualities can be learned and improved over time among nurses through targeted educational interventions, training, mentoring, and hands-on experiences [ 55 , 56 , 57 ]. Nevertheless, while some leadership skills can be developed through training and experience, certain innate character traits may provide an inherent advantage in the cultivation of effective leadership [ 58 ]. For instance, personality traits such as emotional intelligence, empathy, and authenticity have been linked to leadership effectiveness [ibid.]. Although these traits may not be directly teachable, they may serve as foundational elements that contribute to the development of successful transformational leadership practices.

The alignment between the findings of this study and those from various international contexts raises important implications for both the Magnet/Pathway implementation process and the broader understanding of transformational leadership. The resemblance between the identified leadership attributes and those found in studies conducted in different countries suggests a level of universality in the leadership qualities required for successful organization-wide change, particularly in healthcare settings. Furthermore, the consensus between the leadership attributes identified in this study and those from international research may imply that studies solely focused on transformational leadership can offer relevant insights for organizations pursuing Magnet/Pathway designation.

Given the diversity of leadership approaches across other sectors (including industry), it is important to recognize the contextual relativity of specific leadership traits. While the leadership attributes identified in this study are tailored specifically to nursing within hospitals, they may be relevant in other sectors, but require further evaluations in different contexts. While a leader’s ability to communicate a clear vision and motivate employees is as crucial in the business sector as in healthcare, the best way of communication and motivation may vary.

New insights that expand the understanding of the role of leadership in driving organization-wide change that emerge from this study is the perspective on the themes of stamina and agility in the context of transformational leadership and Magnet/Pathway implementation.

The theme of stamina reflects the perseverance and resilience required for implementing Magnet/Pathway principles. Leaders need courage to navigate uncertainty and take calculated risks. Leaders should want to make changes and push them forward with stamina and assertiveness, and who are not afraid to speak up and ask for support from higher authorities. In the context of transformational leadership, stamina has often been discussed as a leader’s perseverance, determination, and resilience in the face of challenges [ 34 ]. However, the findings of this study emphasize a more profound dimension of stamina as the leader’s ability not only to persevere, but also to inspire and sustain momentum during complex, long-term endeavors such as Magnet/Pathway implementation.

The concept of agility as an essential leadership skill has gained attention in recent years and refers to a leader’s ability to adapt quickly to changing circumstances. This aligns with the dynamic nature of healthcare settings, where leaders must respond to changing demands [ 59 ]. Interviewees in this study emphasized the positive impact of agile leadership, which enables leaders to respond rapidly, purposefully, and individually to different situations [ 59 , 60 , 61 ]. By adapting task structures and difficulty levels to match employees’ needs and commitment, leaders can prevent both under- and over-challenging their team members, thereby facilitating their professional development [ 59 , 60 , 61 ]. With the sub-themes showing presence as well as accessibility and responsiveness, it became clear that leaders should be in regular exchange with their employees to be able to react agilely to the requirements and needs [ 62 ]. In contrast, the findings confirm that the lack of frontline presence as well as the leader’s lack of interest in the processes negatively impacted the success of Magnet/Pathway implementation. However, in the context of Magnet/Pathway implementation, agility goes beyond flexibility to include a dynamic responsiveness to evolving healthcare challenges. The results show that leaders need to be flexible not only in their decision-making, but also in their accessibility and responsiveness to employees. This reflects a proactive approach that not only supports the implementation of the Magnet/Pathway principles, but also ensures that employees remain engaged and motivated throughout the transformation process.

Limitations

This study has several limitations. Firstly, the interviews were conducted in only five German hospitals, yet they were the first ones known to have started introducing Magnet or Pathway in Germany. While these hospitals provided valuable insights into the implementation process, the perspectives shared by leaders and staff are not representative of all hospitals in Germany, limiting the generalizability of the findings. Secondly, the majority of interviewees in this study were nurse managers or individuals with leadership responsibilities. As a result, the findings primarily reflect the management and leadership perspective, potentially overlooking the viewpoints and experiences of frontline nurses. It is important to consider a wider range of perspectives to gain a comprehensive understanding of the challenges and opportunities associated with leadership while implementing Magnet/Pathway principles.

This study provides in-depth insights into the leadership attributes that drives the implementation of organization-wide change through Magnet/Pathway principles in German. It offers guidance for nurse leaders seeking to drive positive organization-wide change and enhance employee well-being.

The interviewees in this study emphasized the importance of leadership competencies such as visionary direction, strategic planning, personalized support, resolute stamina, and adaptive agility. The themes of stamina and agility offer new insights, showcasing the need for courage, assertiveness, and adaptability in leaders driving long-term organization-wide change towards Magnet/Pathway.

Given the vital role of transformational leadership in driving organization-wide change, as well as the fact that transformational leadership skills can be trained, a comprehensive preparation and ongoing development of nurse leaders toward transformational leadership skills may support establishing and sustaining a positive work environment in hospitals.

Data availability

A 32-item checklist for interviews and focus groups (COREQ) and the coding tree are provided as supplementary material. The transcripts used and analyzed during the Magnet pioneer study are available from the corresponding author on reasonable request.

Abbreviations

American Nurses Association

American Nurses Credentialing Center

Chief Nursing Officer

Consolidated Criteria for Reporting Qualitative

Interviewee Identification

Multifactor Leadership Questionnaire

National Health Service

Standard deviation

United Sates of America

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Acknowledgements

We extend our thanks to the 18 interviewees for their time and valuable insights, especially considering the challenges posed by the COVID-19 pandemic during the interview data collection period. Their willingness to participate in this study is greatly appreciated and has significantly contributed to our research. We also thank the consortium of the Magnet4Europe study.

The Magnet pioneer study was funded by the B. Braun Foundation (Grant No. 18001021). Additional time on the study was funded by a grant from Robert Bosch Foundation. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

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Contributions

CBM was the PI of the Magnet pioneer study and planned the study and its methodology. CBM and JuK contributed to the study’s design. CBM, JuK and JoK performed data collection and conducted the deductive analysis of the data. JoK conducted the main inductive analyses for the purpose of the current study. CBM and JuK provided critical review and discussion of inductive coding. JoK wrote the first draft manuscript, and prepared tables. CBM, JuK and CG were involved in subsequent iterations and conducted critical review of the manuscript.

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This research has been performed in accordance with the Declaration of Helsinki with ethics approval through the Ethics Committee of the Charité (No. EA4/185/19). Written informed consent was obtained from all interviewees prior to the interviews. For interviewees, neither advantages nor disadvantages resulted from participation or non-participation in the study. Participation could be withdrawn at any time without consequences till anonymizations.

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Kleine, J., Köppen, J., Gurisch, C. et al. Transformational nurse leadership attributes in German hospitals pursuing organization-wide change via Magnet® or Pathway® principles: results from a qualitative study. BMC Health Serv Res 24 , 440 (2024). https://doi.org/10.1186/s12913-024-10862-y

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Evidence synthesis – Indigenous people’s experiences of primary health care in Canada: a qualitative systematic review

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Evidence synthesis – Indigenous people’s experiences of primary health care in Canada: a qualitative systematic review

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Geneveave Barbo, RN, MN, MClSc Author reference footnote 1 ; Sharmin Alam, MA Author reference footnote 2

https://doi.org/10.24095/hpcdp.44.4.01

This article has been peer reviewed.

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Research article by Barbo G et al. in the HPCDP Journal licensed under a Creative Commons Attribution 4.0 International License

Geneveave Barbo, College of Nursing, University of Saskatchewan, Health Science Building - 1A10, Box 6, 107 Wiggins Road, Saskatoon, SK S7N 5E5; Tel: 306-966-6221; Email: [email protected]

Barbo G, Alam S. Indigenous people’s experiences of primary health care in Canada: a qualitative systematic review. Health Promot Chronic Dis Prev Can. 2024;44(4):131-51. https://doi.org/10.24095/hpcdp.44.4.01

Introduction: Indigenous people in Canada encounter negative treatment when accessing primary health care ( PHC ). Despite several qualitative accounts of these experiences, there still has not been a qualitative review conducted on this topic. In this qualitative systematic review, we aimed to explore Indigenous people’s experiences in Canada with PHC services, determine urban versus rural or remote differences and identify recommendations for quality improvement.

Methods: This review was guided by the Joanna Briggs Institute’s methodology for systematic reviews of qualitative evidence. MEDLINE, CINAHL , PubMed, PsycInfo, Embase and Web of Science as well as grey literature and ancestry sources were used to identify relevant articles. Ancestry sources were obtained through reviewing the reference lists of all included articles and determining the ones that potentially met the eligibility criteria. Two independent reviewers conducted the initial and full text screening, data extraction and quality assessment. Once all data were gathered, they were synthesized following the meta-aggregation approach (PROSPERO CRD 42020192353).

Results: The search yielded a total of 2503 articles from the academic databases and 12 articles from the grey literature and ancestry sources. Overall, 22 articles were included in this review. Three major synthesized findings were revealed—satisfactory experiences, discriminatory attitudes and systemic challenges faced by Indigenous patients—along with one synthesized finding on their specific recommendations.

Conclusion: Indigenous people value safe, accessible and respectful care. The discrimination and racism they face negatively affect their overall health and well-being. Hence, it is crucial that changes in health care practice, structures and policy development as well as systemic transformation be implemented immediately.

Keywords : Indigenous people, primary health care, health services accessibility, systematic review, Canada

This is the first qualitative systematic review to explore the experiences of Indigenous people with primary health care services across Canada.
Following Joanna Briggs Institute’s systematic reviews of qualitative evidence methodology, this review included six academic databases as well as grey literature and ancestry sources.
The experiences of Indigenous people accessing primary health care in Canada have been described as supportive and respectful in some cases, but also heavily included discriminatory attitudes and systemic challenges.
Indigenous people living in rural or remote communities reported greater concern about privacy, confidentiality and accessibility compared to those residing in urban locations.

Introduction

The 1946 Constitution of the World Health Organization ( WHO ) established that every human being has the fundamental right to the highest attainable standard of health. Footnote 1 Nevertheless, to this day, health inequities continue to exist worldwide. Footnote 2 Health inequities are systematic differences in the health status of various population groups caused by unequal distribution of social determinants of health that further disadvantage those who are already socially vulnerable. Footnote 2 Footnote 3 The WHO and other public health advocates assert the importance of investing in primary health care ( PHC ) as a means of addressing health inequities within countries. Footnote 4 Footnote 5

In Canada, PHC services have been offered to all eligible residents through the universal public health coverage, also known as Medicare. Footnote 6 Medicare is governed by the 1984 Canada Health Act , which ensures the delivery of health care services (including PHC ) and adherence to the five core principles of public administration, comprehensiveness, universality, portability and accessibility. Footnote 7 In 2000, a PHC reform was agreed upon and launched by the federal, provincial and territorial governments, with the primary goal of improving service access, service quality and health equity as well as responsiveness to patients’ and communities’ needs. Footnote 6 Footnote 8 Yet, PHC access and quality issues continue to persist, particularly for socially marginalized populations, such as in the case of Indigenous Peoples Footnote 9 Footnote 10 Social marginalization is often defined as social exclusion due to a lack of power, resources and status that leads to limited opportunity or accessibility. Footnote 11

Numerous studies have highlighted barriers faced by Indigenous people who reside in urban and rural or remote locations when accessing PHC services, such as discrimination, racism, lack of culturally safe care and inaccessible care. Footnote 12 Footnote 13 Footnote 14 Footnote 15 Despite several qualitative accounts of these negative experiences, a deep search of the literature indicates that there still has not been a qualitative review conducted on this topic. Addressing this literature gap may assist policy makers, health care managers and professionals, and researchers in identifying key areas for improving PHC access and quality across Canada.

Accordingly, we aimed to explore the following research questions:

What are the experiences and perspectives of Indigenous people with PHC services in Canada?
How do these experiences and perspectives differ when comparing PHC services provided in urban versus rural or remote settings?
What are the recommendations of Indigenous people to improve the quality of PHC services delivered in Canada?

Protocol and registration

This systematic review is registered in the International Prospective Register of Systematic Reviews (PROSPERO CRD42020192353).

Eligibility criteria and search strategy

Our review was guided by Joanna Briggs Institute ( JBI ) methodology for systematic reviews of qualitative evidence; Footnote 16 the detailed protocol has been described elsewhere. Footnote 17 English and French qualitative and mixed-methods articles were considered for inclusion if they focussed on first- or second-hand experiences of Indigenous people in Canada when receiving PHC services. There were no restrictions with respect to publication year or research participants’ age, gender, medical condition or geographical location.

A preliminary search of CINAHL and PubMed was conducted to identify keywords and terms relevant to the research questions. A complete search strategy was then developed and tailored to each selected database: MEDLINE, CINAHL , PubMed, PsycInfo, Embase and Web of Science ( Table 1 ). Grey literature was also searched on Google Scholar, Bielefeld Academic Search Engine, ProQuest Dissertations and Theses and other relevant websites (e.g. Native Health Database and National Collaborating Centre for Indigenous Health). Furthermore, the reference list of each included article was examined to identify any additional studies for the review in order to obtain ancestry sources.

Study selection

Following the search, all identified citations were uploaded on Rayyan. Footnote 18 Next, two authors (GB and SA) independently screened the articles’ titles and abstracts against the inclusion criteria. They then independently examined selected articles in full. Reasons for excluding certain articles were noted, and no major discrepancy arose between the two reviewers; hence, the assistance of a third reviewer was not needed. Once all included articles were identified, they performed an independent quality assessment using JBI ’s Critical Appraisal Checklist for Qualitative Research. Footnote 19

Data extraction and synthesis

All pertinent data from the included studies were then retrieved using the JBI data extraction tool. Footnote 16 The extracted data included information on the studies’ methodology, approach to analysis, phenomena of interest, geographical location, participant characteristics, findings and illustrations. These data were then synthesized following JBI ’s meta-aggregation approach; the findings and illustrations were aggregated into categories and further grouped together to create a comprehensive set of synthesized findings. Finally, consistent with Munn et al., Footnote 20 these synthesized findings were assigned a ConQual score to demonstrate their dependability and credibility.

The search yielded a total of 2503 articles from the academic databases and 12 articles from the grey literature and ancestry searches. Overall, 22 articles were included in this review.

Figure 1 illustrates the PRISMA flow diagram of the search results and study selection process. Footnote 21 The methodological quality of all included articles was moderate to high; therefore, no studies were excluded following their appraisal ( Table 2 ).

Characteristics of included studies

The detailed characteristics of the included studies are presented in Table 3 . Articles were published between 2001 and 2020. Various qualitative approaches were used in these studies. These approaches included participatory research design, Footnote 12 Footnote 22 Footnote 23 Footnote 24 Footnote 25 Footnote 26 Footnote 27 Indigenous methodologies, Footnote 13 Footnote 15 Footnote 24 Footnote 28 Footnote 29 Footnote 30 Footnote 31 ethnography, Footnote 25 Footnote 27 Footnote 32 Footnote 33 phenomenology, Footnote 34 Footnote 35 case study, Footnote 14 Footnote 36 qualitative description, Footnote 12 Footnote 37 grounded theory Footnote 38 and mixed methods. Footnote 39 Eleven out of 22 studies represented experiences from major Canadian metropolitan areas, including Calgary, Footnote 25 Footnote 38 Edmonton, Footnote 37 Ottawa, Footnote 23 Toronto, Footnote 29 Footnote 30 Footnote 34 Vancouver Footnote 15 Footnote 28 and Winnipeg, Footnote 13 Footnote 31 while 10 studies were conducted in rural or remote communities within the provinces of British Columbia, Footnote 26 Footnote 27 Footnote 39 Manitoba, Footnote 33 Nova Scotia, Footnote 12 Footnote 24 Ontario Footnote 24 and Quebec Footnote 14 and within the Canadian territories of Nunavut Footnote 22 and Northwest Territories. Footnote 32 Finally, one article included findings from multiple provinces and locations, with participants from urban southern and rural Alberta, urban northern and remote northern Ontario, and rural British Columbia. Footnote 35 The categorization of urban versus rural or remote settings was based on the study setting as defined by the authors as well as by the population density; urban areas are characterized as having at least 400 people per square kilometre, and the opposite is true (< 400/km 2 ) for rural or remote regions. Footnote 40

Research participants of included studies were from First Nations, Métis and Inuit background, and overall were between the ages of 16 and 79 years. Their reasons for seeking PHC and their pre-existing medical conditions also varied (e.g. cancer, arthritis, diabetes, cardiovascular disease, human immunodeficiency virus and mental health disorders).

Synthesized findings

Table 4 presents an overview of the individual findings of our review. Three major synthesized findings emerged from these, pertaining to our first and second research questions, and another one arose for the third research question. Table 5 is a summary of findings containing each synthesized finding’s level of dependability and credibility, as well as ConQual score (which rates confidence in the quality of evidence from reviews of qualitative research) to help their evaluation and integration into education, practice and policy.

Synthesized finding one: supportive and respectful experiences

Synthesized finding one demonstrates that certain experiences of Indigenous people when receiving PHC were considered supportive and respectful. This metasynthesis was developed from four categories that included 15 findings. Some First Nations, Métis and Inuit participants expressed that they had supportive and respectful encounters with PHC providers, as they felt safe, secure, listened to and freely able to express themselves without judgment. This finding was affirmed by one of the First Nations and Métis participants living in an urban location as she described her prenatal care: “My G.P. is just a fantastic doctor because he sits there and actually listens to his patients. He respects that they know as much about what’s going on with their body as he probably does, if not more.” Footnote 31 ,p 165 Another First Nations woman residing in a remote community echoed this positive experience:

When my husband died, my [family] doctor phoned me to tell me to come in to talk with him and see if I was okay and talk about things that happened … and he explained it to me really softly; things like this happen. He was really caring. And that was the best thing that ever happened to me was him phoning me on his own to tell me that. Footnote 32 ,p.140

Participants also greatly appreciated when PHC providers were supportive, accessible and offered as much time as needed to address all of their concerns; similar experiences were described by those residing in urban, rural and remote areas. Having access to dependable information and providers made a significant difference for many of the participants. Many First Nations women in rural communities said that their community health nurses were “always there” to assist them with their health needs. Footnote 12

Moreover, Indigenous participants from urban, rural and remote locations valued health care providers demonstrating respect towards them, their family and their cultural identity. Providers were expected to exhibit culturally sensitive care and to have had training and to possess knowledge about Indigenous history, traditions, customs and challenges. When these qualities were present, PHC providers were perceived to be more helpful and genuine. Overall, across all settings—urban, remote and rural—instances of supportive and respectful PHC were experienced by First Nations, Métis and Inuit participants.

Synthesized finding two: discriminatory attitudes and maltreatment

Synthesized finding two reveals that Indigenous people experienced various forms of discrimination and maltreatment that most often resulted in them not receiving adequate and quality primary health care; thus, many adopted strategies to cope with such challenges. Six categories and 58 findings were represented in this metasynthesis.

There were numerous accounts in which participants shared their experiences of health care providers making comments or exhibiting behaviours based on discrimination. First Nations, Métis and Inuit patients in urban and rural or remote areas were immediately assumed to have tobacco and drug addiction, to be intoxicated by alcohol, to have abusive partners, to mistreat their children, or any combination of these, without any actual justification or evidence of such claims. Footnote 13 Footnote 14 Footnote 15 Footnote 25 Footnote 34 Footnote 38 As reported by an aggravated Inuit participant from a remote community, “I arrived at the clinic and the first thing the doctor asked me is if I’m a smoker. Is that normal? It’s as if she assumed that because I’m Inuit I’m a smoker. I don’t think that is fair.” Footnote 14 ,p.293 A First Nations woman in an urban setting also commented, “Oh I wouldn’t get the proper care if I needed it, like if I was in pain. They thought I’d be there just to get high.” Footnote 34 ,p.122

These negative stereotypes automatically formed the basis of the care that Indigenous people received even though they did not necessarily apply to the specific situation of each patient. Consequently, these patients were generally dismissed, turned away and unable to receive the proper medical care they required, leading to severe complications or even death. Footnote 32

Such situations were experienced in urban, rural and remote locations. As reported by a participant in Goodman et al.:

I reached out on my right side and it really hurt. I went to a DTES [Downtown Eastside] clinic to the doctor and she told me to walk it off. I went to sleep and woke up and thought I was dying—big pain in my chest. I collapsed a lung. I think she thought I wanted painkillers, but I was really hurt. Footnote 15 ,p.90

Another First Nations participant reported in Fontaine et al.:

I lost [a family member]. He did drink a lot. And anyway, he got sick and every time he went to the Nursing Station, the nurse in charge there told him, he said, “Oh, you have a severe hangover,” without checking him. And he went about three, I know three times for sure, whether the fourth time, I can’t remember. But anyway, they kept chasing him home, “There’s nothing wrong with you. You’re just ... quit drinking, get, you’re ... hung over,” you know. Anyway, he died one night in ... his home. Footnote 13 ,p.5

Besides the deliberate omission of quality care, some Indigenous patients also sensed that certain PHC providers had discriminatory attitudes towards Indigenous people. In some cases, as soon as First Nations, Métis and Inuit participants from both urban and rural or remote locations entered a clinic, they instantly felt unwelcomed and judged, based on how the health providers and staff looked at and talked to them. This was further extended in their subsequent interactions, as explained by one frustrated participant in Goodman et al.:

So [the nurse] showed me how to [inject], but she was so mean about it. She was not accommodating. She said I should know how to do it myself. They treated me like crap, and I know it was because I was Native. We all know because of the look—there’s a look. When you need the medical care, we put up with it. We shouldn’t have to. We bleed the same way, we birth the same way. We have no choice … Footnote 15 ,p.89

Some participants in urban as well as rural or remote areas thought that the negative attitudes and judgments of PHC providers may have stemmed from their lack of understanding or disregard for Indigenous life experiences, history, background and socioeconomic and political circumstances, Footnote 23 Footnote 25 Footnote 37 but this was particularly emphasized by individuals living in rural or remote communities. There were instances in which First Nations women living on-reserve, who were required to travel to the city due to the unavailability of specialized services or diagnostic tools in their communities, were constantly fined for being late or missing their appointments in the city, even though the primary reasons for missing the appointments were that they were not able to afford a phone, or that there were traffic delays resulting from travelling a long distance. Footnote 32 As Browne and Fiske reported, “The embarrassment associated with being late or with being asked to pay the cancellation fine when they lacked the money shaped women’s experiences and left women with the sense that they were being blamed for circumstances beyond their control.” Footnote 32 ,p.138

As a result of these various negative interactions with PHC providers and the health care system, numerous Indigenous patients learned to cope by deciding not to disclose their cultural identity and medical history, presenting themselves to look more credible, or simply avoiding seeking care. Certain participants in Goodman et al., Footnote 15 Monchalin et al. Footnote 30 and Oelke Footnote 25 divulged having omitted sharing their Indigenous background and certain aspects of their medical history to PHC providers, as they believed that this information would not be beneficial for their care, and worse, might only lead to discriminatory acts. Others chose to dress or behave differently in front of PHC providers to gain respect. Footnote 32 Indeed, one First Nations participant living in a remote community elaborated in Browne and Fiske:

It seemed like any time I go to a doctor I would have to be well dressed. I have to be on my best behaviour and talking and I have to sound educated to get any kind of respect…. If I was sicker than a dog and if I didn’t want to talk and I didn’t care how I sounded or whatever, I’d get treated … like lower than low. But if I was dressed appropriately and spoke really well, like I usually do, then I’d get treated differently…. But why do I have to try harder to get any kind of respect? You know, why do I have to explain? Footnote 32 ,p.135

In certain cases, Indigenous patients delayed seeking care as long as possible to prevent being subjected to traumatic and discriminatory experiences. Footnote 15 Footnote 25 They sought health care only when their illness or symptoms had become serious, and they were left with no choice. Footnote 15 Footnote 25 Many participants from both urban and rural or remote regions admitted to distrusting PHC providers. Footnote 13 Footnote 24 Footnote 26 Footnote 34 However, Inuit and First Nations patients residing in rural or remote communities expressed significant concerns about whether providers were adequately protecting their privacy and confidentiality. Footnote 14 Footnote 22 Footnote 24

When comparing the PHC experiences of First Nations, Métis and Inuit participants in urban and rural or remote settings, we found very limited differences. As demonstrated above, similar to Indigenous patients living in urban areas, rural or remote participants also faced discriminatory attitudes and dismissive and judgmental care, forcing them to develop strategies for coping with such maltreatment. One particular geographical difference, however, was the fear of privacy and confidentiality breach. Although one participant in the study by Bucharski et al., Footnote 37 which included First Nations and Métis women in an urban setting, expressed their concern about privacy and confidentiality, multiple First Nations, Métis and Inuit participants in rural or remote locations highlighted this fear. This concern may be more significant for residents of close-knit, small communities, as are often found in rural or remote locations. For these participants, PHC providers who were not considered “locals” were at times preferred, since they did not know anyone from the community and/or they would only be temporarily working in the community. Footnote 14

Synthesized finding three: structural and practice issues

Synthesized finding three highlights issues related to the PHC system’s structure and practices that led Indigenous people to experience inaccessible and incomplete care. Four categories and 32 findings formed the basis of this metasynthesis.

Our review found that major shortages of PHC providers existed across Canada. As a result, the Indigenous patients in the studies we reviewed who lived in both urban and rural or remote settings experienced lack of continuity of care, inaccessibility, short visits and inadequate health teaching and promotion. Many First Nations and Métis people who lived in cities did not have a family doctor; hence, they most often opted to visit walk-in clinics where various physicians rotate to cover the hours, and patients did not necessarily see the same physician during all their visits. Footnote 25 Footnote 35 Establishing a therapeutic physician–patient relationship may be impossible in such brief encounters. This issue was even more problematic in rural and remote communities, where the transiency of PHC providers is prominent, and their recruitment and retention are challenging. Footnote 22 Footnote 27 Footnote 32 Footnote 35 Some First Nations and Métis participants in Jacklin et al. “felt that once doctors gain experience, ‘they want more money here, and if they don’t get it, they quit and move on.’” Footnote 35 ,pp.109-110

Additionally, Inuit and First Nations patients who lived in rural or remote regions could not easily access certain medical care and preventive services. Footnote 12 Footnote 14 Footnote 34 Footnote 39 Minimal or no time was dedicated to health teaching or promotion, especially in a manner that was culturally appropriate. Footnote 14 Indeed, as one of the Inuit participants in Fraser and Nadeau confirmed,

If I was diabetic, for example, I would need information, what can I eat and what can I not. My Grandmother, they did not give her any ideas what she can eat and what she cannot do…. They need to have examples, recipes, and take less salt and sugar. And, how to make bannock. Like when you make spaghetti, use the whole wheat spaghetti. All those nutrition information. People need encouragement. Footnote 14 ,p.292

Though health promotion materials, such as brochures and videos, may be available, First Nations and Métis participants in Oekle Footnote 25 further highlighted the absence of culturally adapted verbal and visual teachings. One participant reported, “The prevention services that are available for First Nations are what’s ever in the hype for the White crowd. So if it’s a White problem, a White prevention problem, those are what’s available.” Footnote 25 ,p.147 Also, visits of First Nations and Métis patients with PHC providers in metropolitan, rural and remote areas were commonly described as “rushed,” there being “never enough time,” “a race to fit as much patients as possible” and “similar to an assembly line.” Footnote 23 Footnote 31 Footnote 33 Footnote 35 For this reason, many felt that their needs and concerns were not entirely addressed. Footnote 33 Footnote 35

In regard to other geographical considerations, despite the differences of PHC services offered in urban and rural or remote settings, PHC structure and practices in all three settings similarly affected the accessibility of care experienced by Indigenous people. For instance, in rural or remote locations, hospitals and specialized care did not necessarily exist. PHC providers within these settings therefore generally assumed an expanded role to offer additional services to community; however, this had its limits, as certain diagnostic tools and specialists were only available in the major cities. Footnote 12 Footnote 14 In urban areas, First Nations and Métis people encountered comparable accessibility challenges, including the lack of PHC services for children and youth, and mental health support. Footnote 25

Synthesized finding four: recommendations

Synthesized finding four focussed on Indigenous patients’ recommendations for greater emphasis on culturally sensitive empathic care, recruitment of Indigenous PHC providers, accessibility and health teaching and promotion. This last metasynthesis was created from five categories and 25 findings.

Numerous First Nations, Métis and Inuit participants emphasized the importance of cultural sensitivity and empathy, indicating that it is paramount that all PHC providers and staff are familiar with Indigenous history and practices. Footnote 34 Footnote 33 Footnote 37 They expressed the idea that only through education would providers and staff start to be empathic and respectful towards Indigenous peoples. Footnote 13 Footnote 37 Besides provider–patient interactions, cultural sensitivity could also be conveyed in the design of the physical spaces where PHC services are delivered. Participants suggested that incorporating Indigenous symbols or art onto the walls of the clinic could provide a more welcoming environment for patients. Footnote 29

Participants also suggested that greater funding should be allocated to recruiting PHC providers and staff, particularly those with an Indigenous background. Footnote 12 Footnote 23 Footnote 25 Footnote 34 Footnote 35 Footnote 36 As one participant explained, “I just think they need to have more Native doctors and nurses ... for Aboriginal peoples to feel comfortable ... or people that are experienced in Aboriginal culture. It would be nice to have our own Aboriginal people running it.” Footnote 23 ,p.83

Furthermore, there is a great need to enhance health teaching and promotion in all PHC settings. Footnote 14 Footnote 25 Footnote 33 Footnote 35 Health teaching and promotion must also appropriately consider the cultural context and challenges of Indigenous peoples for these to be perceived as beneficial. Footnote 25

Lastly, when geographical differences between urban and rural or remote settings were examined, minor nuances were noticed. Although recommendations for culturally sensitive empathic care, recruitment of Indigenous PHC providers, improved accessibility and health education were common across First Nations, Métis and Inuit participants from urban and rural or remote regions, certain recommendations were given more emphasis within one particular setting. For example, the need for culturally sensitive empathic care and recruitment of Indigenous PHC providers was pointed out more by First Nations and Métis participants residing in the urban areas than those in rural or remote communities, who mostly emphasized suggestions for accessibility and health teaching and promotion.

The purpose of this qualitative systematic review was to explore Indigenous people’s experiences in Canada with PHC services, determine urban versus rural or remote differences and identify recommendations for quality improvement. Three major synthesized findings were revealed—supportive and respectful experiences, discriminatory attitudes and systemic challenges faced by Indigenous patients—along with one synthesized finding on their specific recommendations.

The conflicting PHC experiences of First Nations, Métis and Inuit participants, wherein instances of supportive and respectful interactions were revealed while discriminatory attitudes and systemic barriers simultaneously exist, attest to the multifaceted complexity of the situation. The interplay between systemic, institutional and interpersonal factors may have influenced these conflicting PHC experiences. The historical and intergenerational traumas of colonization, forced assimilation and residential schools continue to leave a lasting effect on the health care system, contributing to systemic discrimination that is ingrained within Canada’s health care policies and structures. The policies and structures of the health care system often reflect historical biases and stereotypes rooted in the colonial era and the legacy of residential schools. These biases manifest in policies that fail to adequately address the unique health challenges faced by Indigenous populations, resulting in unequal access to health care resources and services.

Additionally, there is limited Indigenous representation in health care policy making and leadership. This absence of perspective leads to a health care system that often does not fully understand or prioritize the health needs of Indigenous communities, further alienating them from the system. Although at the institutional level some organizations have invested in cultural sensitivity and antiracism training for health care providers, which can result in more positive experiences for Indigenous patients, individual health care providers within these organizations may still hold conscious or unconscious biases against Indigenous peoples, which can negatively affect the quality of care received.

In sum, the disparity in PHC experiences among Indigenous communities arises from a multifaceted set of conditions that operate at various levels. While systemic issues such as discrimination and racism can lead to negative experiences, targeted interventions and personal relationships can sometimes result in positive interactions. Therefore, efforts to improve PHC health care for Indigenous people in Canada need to be comprehensive, multipronged and culturally sensitive to effectively address this complex situation.

Indigenous people in this review valued safe, accessible and respectful care, aligning with their basic human rights as outlined in the United Nations Declaration on the Rights of Indigenous Peoples Footnote 41 and the Truth and Reconciliation Commission ( TRC ) of Canada’s calls to action. Footnote 42 Canadian governments and other sectors are nowhere near fulfilling these calls to action, Footnote 43 particularly in the domain of health. At the current pace, completing all the calls to action will take until 2065. Footnote 43 This shortcoming is particularly evident in our review; significant findings from most of the included articles illustrated considerable discrimination, racism and maltreatment of Indigenous peoples. Synthesized findings two and three echoed these unjust experiences that Indigenous patients had to face (and potentially continue to face).

The discrimination and racism faced by the Indigenous people in this review negatively affected their overall health and well-being. While accessing PHC , they often felt uncomfortable and judged due to providers’ negative stereotypes of Indigenous people. These attitudes, along with dismissive care and maltreatment, caused Indigenous people in the studies reviewed to avoid seeking care, exacerbating medical symptoms and potentially leading to severe complications or death.

Similar findings in other studies show that past experiences of discrimination and racism made Indigenous people more likely to avoid medical assistance, contributing to unfavourable health outcomes. Footnote 3 Footnote 44 The life expectancy of Indigenous people is five years less than that of the general population. Footnote 3 Additionally, the prevalence of infectious diseases, chronic conditions and mental health disorders as well as infant mortality rates among Indigenous populations in Canada are significantly higher compared to non-Indigenous Canadians. Footnote 3 These disparities were further exacerbated during the pandemic, particularly for Indigenous people in rural and remote communities, who contracted COVID-19 at rates three to four times the national average—rising to seven and eight times in some weeks. Footnote 45

In this review, First Nations, Métis and Inuit participants living in rural or remote locations were also more likely to experience maltreatment and dismissive care as well as issues with privacy, confidentiality and accessibility. Footnote 1 Footnote 12 Footnote 13 Footnote 14 Footnote 15 Footnote 22 Footnote 24 Footnote 34 These particular issues could be attributed to the close-knit nature of small communities and the structural barriers associated with the lack of health care infrastructure within these areas. Even though we identified 10 studies of rural and remote regions, there were still limited findings on Indigenous people’s PHC experiences in such regions, which prevented a deeper analysis of geographical considerations. The inclusion of participants from diverse geographical settings, however, adds another layer of complexity and richness to the findings, as it allows for a more nuanced understanding of how location may impact health care experiences. Hence, more research on PHC experiences of Indigenous peoples living in rural or remote communities is required to comprehensively understand the challenges they encounter.

Overall, the synthesized findings of this review emphasize the urgent need to address longstanding discrimination and racism, while also advocating for the implementation of sustainable changes to prevent further endangerment of Indigenous lives in Canada.

Recommendations

Indigenous patients have highlighted numerous problems with PHC services, leading to calls for changes in health care practice, structures and policy development. This includes emphasizing Indigenous culture in training, improving cross-cultural communication and prioritizing education to reduce negative experiences, all of which are in line with the TRC calls to action numbers 23 and 24. Footnote 42 Footnote 46 Despite an increase in cultural competency and antiracism training, Footnote 47 there is still a need to increase the methodological rigour and standardization of such training, as well as to examine their long-term effects while stressing Indigenous community partnerships. Footnote 46 Footnote 48 Health care providers should also practise some form of self-reflection, such as journalling or meditation, to examine personal biases. Footnote 49 This approach, aligned with cultural humility principles, teaches providers to defer to clients as experts in their own culture, creating a safer, nonjudgmental environment with the voices of Indigenous patients at its forefront. Footnote 49

However, the focus of change should not be solely on health care practice and providers. Systemic transformation, including more funding and support for Indigenous communities, must happen concurrently in order to establish meaningful traction towards better patient care. There is a nationwide shortage of Indigenous PHC providers and staff that requires immediate attention. As emphasized in the TRC calls to action, “We call upon all levels of government to increase the number of Aboriginal professionals working in the health-care field [and to] ensure the retention of Aboriginal health care providers in Aboriginal communities…” Footnote 42 ,p.164 These key actors are critical in all sectors of society, from frontline and academia to research and policy development. Footnote 49 At this point, the inclusion of Indigenous people across all sectors should be the norm, and not merely an afterthought.

Strengths and limitations

This is the first qualitative review exploring Indigenous people’s experiences with PHC services across Canada, serving as a valuable guide for policy makers and health care providers to identify target areas for improvement. Only by incorporating the voices of service users into health policies and interventions will the PHC and health care system as a whole deliver services that truly and meaningfully meet patients’ and communities’ needs. However, a limitation of qualitative review stems from the pooling of findings that are context-dependent, thus potentially reducing the emphasis on important contextual factors. Nevertheless, through our use of the chosen methodology (i.e. meta-aggregation), the traditions of qualitative research were maintained, preserving the context of each study and aggregating findings into a combined whole. Footnote 16 This strengthens the review’s findings, making them more appropriate for guiding policy makers and health care providers.

Despite some supportive and respectful encounters with PHC providers, the majority of the experiences of Indigenous peoples were inadequate, unjust and filled with discriminatory attitudes and behaviours. Certainly, more work needs to be done before Canada meets all five core principles of the Canada Health Act . Footnote 7 These principles are the basis of our health care system and should be applicable to all Canadians, irrespective of their age, gender, race and cultural background. Footnote 7 Therefore, it is the duty of Canadian governments, other sectors and citizens to ensure that Indigenous people receive the health care they deserve.

Acknowledgements

We acknowledge Ms. Anita Kiafar for her ideas and feedback during the initial conceptualization phase of this systematic review. While not involved in the writing, her input during discussions was appreciated.

This research did not receive any funding.

Conflicts of interest

The authors declare there are no conflicts of interest.

Authors’ contributions and statement

GB, SA—conceptualization.
GB, SA—formal analysis.
GB—project administration.
GB, SA—visualization.
GB—writing—original draft.
GB, SA—review & editing.

The content and views expressed in this article are those of the authors and do not necessarily reflect those of the Government of Canada.

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BMC Geriatrics volume 24 , Article number: 342 ( 2024 ) Cite this article

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Family caregivers play a crucial role in providing physical, emotional, and social support to the elderly, allowing them to maintain their independence and stay in their preferred living environment. However, family caregivers face numerous challenges and require specific knowledge and skills to provide effective care. Therefore, understanding the knowledge and skills required for effective family caregiving in elderly home care is vital to support both the caregivers and the elderly recipients.

The research was carried out in Mekelle City, Ethiopia, utilizing the phenomenology study design and purposive sampling technique. A total of twenty-two in-depth interviews were conducted. Individuals with experience in providing care for elderly people in their homes were targeted. Data was gathered through the use of an open-ended guide, transcribed word-for-word, inputted into ATLAS.ti8 software, and translated. Codes and themes were then extracted from the transcribed data, and a thematic analysis was performed. To minimize personal biases, the collected data were coded independently by the data collection assistants and the PI. The analysis was carried out by authors who were not involved in the data collection process. The interviews were conducted in a quiet place.

A total of 22 in-depth interviews were conducted as part of this research. The results indicated that although the participants had knowledge about common health problems experienced by older people, they were uninformed about how to manage these conditions at home and were unaware of specialized healthcare resources for the elderly. Furthermore, they had limited knowledge about suitable exercise routines, strategies to prevent falls, and home healthcare practices for older individuals. On the other hand, they exhibited a solid comprehension and awareness of abusive behaviors specifically directed at older adults.

The results emphasized the importance of enhancing education and training for family caregivers in handling elderly health issues, raising awareness about specialized healthcare services catered to the elderly, improving understanding of activities of daily living (ADLs) and fall prevention, and offering inclusive training in healthcare tasks related to elder care.

Recommendation

Participants should receive comprehensive education and training programs to enhance their knowledge and skills in managing these conditions. Efforts should also be made to raise awareness about the availability of geriatric hospitals or specialized nurses for the elderly. Participants need to be educated about suitable exercise routines for the elderly and fall prevention strategies. Healthcare skills training is also necessary for participants, focusing on activities such as wound dressing, vital sign monitoring, and establishing a specific schedule for changing positions.

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Introduction

Healthy aging is a constant process that improves the person’s health and quality of life [ 1 ].

According to a UN estimate on the world’s population outlook, by 2050, more than 63% of the world’s population—or approximately 22% of all people—will be 60 years of age or older and more than 63% will reside in Africa [ 2 ].

Caregiving becomes increasingly complicated and difficult as people age because of chronic illnesses and ongoing loss of mental and physical independence [ 3 ].Furthermore, research indicates that more than 70% of persons 60 and older view old age as a nightmare, a time of uncertainty about the future, and a time when they must rely on others for nearly everything [ 4 ].

The family-centered care paradigm was famously created in pediatrics and has now been applied to various fields, such as cancer, HIV, palliative care, and hospice care [ 5 ]. It is currently being modified for the care of vulnerable older individuals. Through information exchange, involvement in decision-making, and cooperation in the formulation of policies and programs, patient and family knowledge, values, beliefs, and cultural backgrounds are incorporated into the planning and delivery of treatment [ 6 ].

The older adult population suffers from poverty and social isolation especially in developing country like Ethiopia since many of them are retired and have scant or no retirement plans or benefits. For example, a study on the elderly conducted in Cameron revealed that older adults are the most vulnerable and disadvantaged people in society and are reliant on family members for their fundamental requirements [ 7 ].

Elderly family members who are unable to take care of themselves are supported by family caregivers who offer them physical, emotional, psychological, and occasionally financial support [ 8 ]. The majorities of them, however, perform this duty with little to no understanding of care, assistance, or support [ 9 ] Family caregivers who lack sufficient understanding may unintentionally injure their loved ones and sometimes even themselves [ 10 , 11 ].

In sub-Saharan Africa, it is typical for the younger spouse, (often the wife), children, or grandkids to be responsible for caring for their elderly family members [ 12 ].These family carers are required to help their elderly family members with everyday tasks and guard against elder abuse and falls [ 13 , 14 , 15 ].More broadly, they aid older family members who are unable to care for themselves by providing physical, emotional, psychological, and occasionally financial support [ 8 ].

Ethiopian traditional beliefs presuppose that younger family members will care for the elderly. Families, including children and relatives, are expected to care for the elderly, thus helping them is seen as a blessing and a good opportunity for kids. However, the majority of the family care givers in sub-Saharan Africa, including Ethiopia carry out this function with little to no knowledge of care, aid, or support [ 8 , 9 ]. Thus, exploring family care giver’s knowledge and skills for effective family caregiving in elderly home care using qualitative study to gather rich and detailed information that goes beyond numerical data is paramount important to take further action about caring of older adults at home.

Study area and period

The research took place in Mekelle, which is a city located in the Tigray region of northern Ethiopia. The study was conducted between December 2022 and October 2023. Mekelle is both the capital and largest city in the region, with a population of about 500,000 residents. The city is situated at an altitude of 2,084 m (6,837 feet) above sea level and is approximately 783 km (487 miles) away from the Ethiopian capital of Addis Ababa.

Study design

Phenomenological Study design was used to explore the personal experiences, thoughts, feelings, and perceptions of family caregivers in the context of providing care for elderly individuals at home.

Source and study populations

Source population.

All individuals who are over the age of 18 and living in Mekelle city and responsible for taking care of their elderly relatives in their homes.

Study population

All selected family care givers who were responsible for providing care for their elderly loved ones within their own homes.

Sample size determination

The sample size was determined by the level of saturation. Twenty two study participants were used for in-depth interview.

Sampling technique and procedure

We used a purposive sampling technique, which is non-probability, to select participants for our study. We specifically targeted individuals with experience in providing care for elderly people in their homes. To find these participants, we reached out to healthcare professionals like doctors, nurses, and social workers who regularly interact with elderly patients. Community events related to elderly care and family caregiving also allowed us to connect with potential participants. Additionally, we made use of online platforms, such as social media groups focused on family caregiving or elderly care, in order to reach a larger audience.

Data collection method

We developed and translated an open-ended English guide into the local language, Tigrigna, with the assistance of experts. Two experienced research assistants helped with the data collection process as data collection assistants. One assistant used a tape recorder to record interviews, while the other took notes. The PI moderated the data collection process. In-depth interviews were conducted to gather thorough information on the experiences, perspectives, and insights of family caregivers who provide care for elderly individuals in their homes.

Data quality assurance

Before starting the actual work, open-ended guiding questions were prepared and discussed with experts. Data collection assistants were trained to take notes and record using a tape recorder for one day. The use of an open-ended guiding question helped prevent dominance from participants. After each day of data collection, a debriefing session was conducted by the data collection assistants and the principal investigator (PI). The recorded data were read, re-read, and transcribed by both the researchers and data collection assistants separately to ensure data reliability. To minimize personal biases, the collected data were coded independently by the data collection assistants and the PI. The analysis was carried out by authors who were not involved in the data collection process. The interviews were conducted in a quiet place.

Data analysis and presentation

The information was gathered using a tape recorder and notes. It was later transcribed, entered into Atlas-ti8, and translated. Codes were generated and organized, eventually leading to the formation of five themes. The thematic analysis approach was employed, and the outcome was presented in both written form and as a table.

A total of twenty two individuals were participated in the study (Table 1). The results of the study were summarized in to five thematic areas: Awareness of participants on common elderly health conditions and their home based management care, Awareness of study participants on availability of elderly care resources, Awareness on practice of ADLs and fall prevention, awareness towards practices related to simple and highly skilled healthcare activities, and awareness on abuse related practices.

Awareness of participants towards common health conditions and their home based management care

Concerning the awareness of participants regarding common health conditions in elders, participants showed a good understanding. They mentioned nearly all of the common health conditions that affect elders. However, most participants lacked knowledge about how to manage these conditions properly. Caregivers, based on their opinions, have a widespread awareness of the common health conditions that affect elderly individuals. Conditions such as joint pain, forgetfulness and memory loss, visual impairment, hearing loss, and age-related muscle weakness were among those mentioned. However, what is particularly notable is the lack of knowledge regarding the management of these conditions. The participants expressed uncertainty about selecting appropriate exercises for joint pain, effectively managing forgetfulness and memory loss, providing assistance beyond clear communication for hearing loss, and measuring blood pressure.

“…….Joint pain is a common health condition among the elderly. My mother often complains about her knees and hip joints hurting, particularly during long periods of walking or standing. While I provide her with exercises, I am unsure about the most appropriate type of exercise to alleviate her pain. I know also some other common elderly health conditions like diabetes, high blood pressure and eye problems…….P 1 ” . “I have observed instances of forgetfulness and memory loss not only in my father but also in several other elderly individuals. It is quite common for him to misplace his belongings frequently or repeatedly ask the same question……… This issue poses a significant challenge for me as I am uncertain about how to effectively manage and assist him with this problem on my own. Additional support and guidance are desperately needed in order to address this situation adequately…P 7 ”. “My father is experiencing respiratory conditions, and I am also aware that high blood pressure is common among older individuals……. I have noticed several instances where it remains undetected until it causes significant health problems……….Unfortunately, we do not have a blood pressure measuring device at home and I have no any clue how to measure it, so I am unable to check my father’s blood pressure. However, when I take him to the hospital for his other health concerns, they do measure his blood pressure during the check-up….P 10 ” .

One participant demonstrated a good understanding and proactive approach towards managing his grandmother’s visual impairment caused by age-related eye problems. But nevertheless, the participant lacked knowledge and understanding on management of other common health conditions experienced by older adults such as joint pain, neck and back pain, memory loss, and chronic diseases.

“…………….My grandmother suffers from visual impairment caused by age-related eye problems. She experiences difficulty in reading or recognizing faces from a distance. To effectively manage this condition, I ensure her eyeglasses are clean and take her for regular eye check-ups. I know also many other cases which are common in older adults although, I have no clue about their management. For example: joint pain, neck and back pain, memory loss, and chronic diseases….P 6 ” .

Another one participant has also demonstrated awareness and proactive measures in managing his father’s health condition related to age-related muscle weakness. By installing handrails and providing a walker, he has significantly improved his father’s mobility and independent functioning.

“My father has difficulties walking due to age-related muscle weakness. He often requires assistance with activities like climbing stairs or getting in and out of bed. I have installed handrails around the house and provided him with a walker, significantly improving his mobility…P 15 . ”

Awareness of study participants on availability of Elderly Care resources

The participants have expressed a lack of awareness regarding the availability of geriatric hospitals or specialized nurses for the elderly. They acknowledged their limited knowledge and stated that they had not come across any specific resources or services catering to elderly care. “……………As far as my knowledge goes, I don’t think there are geriatric hospitals. I haven’t come across any information or services specifically focused on elderly care. I know there are general hospitals and nurses, but I have no idea if there are specific geriatric hospitals or specialized nurses for the elderly….P 2 ” .

However, they were aware of the presence of non-governmental organizations and social care services that offer assistance and support for the elderly population.

“Yes, I was aware of the existence of non-governmental organizations and social care services that offer assistance and care for the elderly. In fact, I have personally utilized some of these services for my aging parents………. These organizations provide various forms of support, such as in-home care, transportation assistance, and respite services. They have been a valuable resource for my family, helping us ensure that our elderly loved ones receive the necessary care and support they need…… P 4 ” .

“………….Certainly, I have knowledge about the presence of non-governmental organizations and social care services that offer assistance and care for the elderly. When my grandmother required more support than our family could provide on our own, we explored these services and found several reputable organizations that support elders. They offer services such as personal care, meal preparation, and even companionship for the elderly. The availability of these organizations has been a great relief for families like ours, as they provide professional caregivers who contribute to the overall well-being and quality of life of the elderly population……P 8 ” .

Awareness on practices of ADLs and fall prevention

Study participants were actively involved in assisting their elder family members with certain activities of daily living (ADLs) such as cooking meals, washing clothes, and bathing.

“……….As a family caregiver, I take care of my aging loved one by cooking meals, washing their clothes, and ensuring they receive proper assistance with bathing….P 16 . ”

“I have taken on the responsibility of cooking meals, washing my elderly family member’s clothes, and helping them with bathing to ensure their comfort and well-being in their home….P 1 . ”

But nevertheless, they lacked knowledge about suitable exercise routines for the elderly and, therefore, do not provide any assistance in that aspect.

“……I didn’t know that there were limits to the elderly’s exercise capacity. I just assumed they would let me know if something was too much for them. I never actively engaged them in exercise or encouraged any physical activities….P 17 . ”

“Exercise routines?…. I guess I never thought much about it. I mean, they’re old, so I didn’t think they need much physical activity. I haven’t made any specific measures to ensure their safety or meet their needs in terms of exercise….P 22 . ”

One has expressed with limited awareness of home arrangements with the elderly consideration.

“….To be honest, I never really thought about the safety aspects of the home in relation to the elderly. I didn’t make any specific changes or modifications to prevent accidents or accommodate their needs…P 13 ” .

Awareness towards practices related to simple and highly skilled healthcare activities

Participants in the study fulfilled their duty of looking after their elderly family member by complying with the doctor’s instructions and ensuring that the recommended medications were taken as instructed. Their dedication involved following the prescribed dosage and timing to ensure their family member derived the utmost advantage from the medication. Additionally, the participants showed their support by accompanying the elderly family member to medical appointments.

“I always make sure to give the prescribed medications to my elderly mother member as per the doctor’s instructions………. I try my best to follow the dosage and timing mentioned on the prescription…P 18 ” .

“……………Taking my elderly family member for doctor’s appointments is an important responsibility for me. I make sure to accompany them and ask relevant questions to the doctor regarding their health condition and medication…….P 10 ”.

However, they lacked knowledge and skills in home based healthcare activities such as wound dressing, monitoring vital signs, and establishing a specific schedule for changing positions. While they strived to meet their family members’ requests for position changes and the changing of soiled linens, they were not necessarily adhering to a specific time interval.

No, I am not aware of any specific healthcare activities related to wound dressing or changing positions frequently to prevent becoming bedridden. I only change the position when my elderly family member asks for it and change the soiled linens as soon as they get soiled.P 7 .

“I don’t have the knowledge or skills to monitor vital signs or perform wound dressing at home. I do change the positions of my elderly family member when they request it, but I am not aware of the specific time intervals when to change….P 20 ” .

Awareness on abuse related practices

The care givers had a strong awareness and understanding of abuse-related practices towards elders. They condemn any form of physical abuse, such as beating, and emphasize the importance of communication and peaceful resolution of conflicts. They also recognize the significance of providing proper nourishment and addressing dietary needs, highlighting the harm of neglecting the elderly’s access to healthy meals. Respectful and calm communication is advocated to avoid any emotional or mental harm to elders. Additionally, they stress the responsibility of providing attention and care, rejecting the notion of ignoring elders.

“I believe that abuse towards our elders is completely unacceptable……… I have never resorted to beating my elderly parents as a means of control or discipline. Instead, I try to communicate with them calmly and find peaceful solutions to any issues that may arise….P 3 . ”

“…………Refusing food to our elders is a form of neglect and abuse. I strongly believe in providing nourishment and taking care of their dietary needs. It is vital to ensure that they have access to healthy and balanced meals to maintain their well-being….P 21 ” .

“Yelling at our elders is not only disrespectful but also harmful to their mental and emotional health. I always try to maintain a calm and patient demeanor when communicating with my elders, even in challenging situations….P 9 ” .

“I believe it is our responsibility to provide proper attention and care to our elders. Ignoring them is simply not an option…………. I dedicate time every day to spend quality moments with them, listen to their stories, and address their concerns….P 11 . ”

The findings of this qualitative study highlight several important gaps in knowledge and skills among family caregivers in elderly home care. The participants demonstrated a good understanding of common health conditions affecting elders, indicating a basic foundation of knowledge in this area. However, they lacked knowledge about proper management of these conditions, suggesting a need for education and training to improve their caregiving abilities. This finding aligns with previous research, which has also identified knowledge gaps among family caregivers in areas such as medication management and symptom control [ 16 ].

One notable gap identified in this study is the lack of awareness regarding the availability of geriatric hospitals or specialized nurses for the elderly. This suggests that participants may be unaware of the resources and support services available to them, which could impact their ability to provide optimal care for their elderly relatives. Improving awareness of these resources is therefore crucial to ensure that family caregivers are accessing the necessary support to fulfill their caregiving responsibilities effectively. Previous studies have also highlighted the importance of providing information and education to family caregivers about available resources and services [ 17 ].

Another significant gap identified in this study is the lack of awareness and knowledge about suitable exercise routines for the elderly activities on daily living (ADLs) and fall prevention. ADLs are essential for maintaining independence and quality of life among elderly individuals, and family caregivers have a crucial role in assisting with these activities. Similarly, fall prevention is vital to prevent injuries and maintain the well-being of elderly individuals. Addressing this knowledge gap is essential to ensure that family caregivers are equipped with the necessary skills to promote independence and prevent accidents. Previous studies have emphasized the importance of caregiver education and training in ADLs and fall prevention [ 18 ].

Furthermore, participants in this study exhibited insufficient knowledge and skills in healthcare activities such as wound dressing, monitoring vital signs, and establishing a specific schedule for changing positions. These activities are critical for maintaining the health and well-being of elderly individuals, particularly those with chronic illnesses or physical limitations. Providing education and training on these healthcare activities is crucial to enhance the caregiving skills of family caregivers and ensure the provision of adequate medical care at home.

Despite these knowledge and skills gaps, it is encouraging to note that most participants demonstrated a strong awareness and understanding of abuse-related practices towards older adults. This highlights the importance of recognizing and addressing elder abuse, as family caregivers are in a unique position to detect and prevent such abuse. However, further research is needed to explore the specific actions and strategies that family caregivers can employ to effectively address elder abuse.

The results indicate that while participants showed a good understanding of common health conditions affecting elders, they lacked knowledge about managing these conditions properly. Participants also expressed a lack of awareness regarding the availability of geriatric hospitals or specialized nurses for the elderly. There was also a lack of awareness and knowledge about suitable exercise routines for the elderly on activities of daily living (ADLs) and fall prevention. Furthermore, participants lacked knowledge and skills in healthcare activities such as wound dressing, monitoring vital signs, and establishing a specific schedule for changing positions. However, most participants had a strong awareness and understanding of abuse-related practices towards elders. In conclusion, the study reveals that participants possess a solid understanding of common health conditions affecting the elderly but lack knowledge about proper management of these conditions. Furthermore, participants expressed a lack of awareness regarding the availability of geriatric hospitals or specialized nurses for the elderly. Moreover, there was a notable lack of awareness and knowledge regarding practices related to activities of daily living (ADLs) and fall prevention. Additionally, participants exhibited insufficient knowledge and skills in healthcare activities such as wound dressing, monitoring vital signs, and establishing a specific schedule for changing positions. Despite these gaps, most participants demonstrated a strong awareness and understanding of abuse-related practices towards older adults.

Participants should receive comprehensive education and training programs to enhance their knowledge and skills in managing these conditions. This includes learning proper management techniques, understanding available healthcare resources, and being aware of specialized care options for older adults. Efforts should also be made to raise awareness about the availability of geriatric hospitals or specialized nurses for the elderly. Participants need to be educated about suitable exercise routines for the elderly and fall prevention strategies. Healthcare skills training is also necessary for participants, focusing on activities such as wound dressing, vital sign monitoring, and establishing a specific schedule for changing positions.

Data availability

The datasets used and/or analysed during the current study available from the corresponding author on reasonable request. •.

Abbreviations

Activity of Daily living

Human immune virus

Institutional review board

Principal investigator

United Nation

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Acknowledgements

We sincerely appreciate Mekelle University and want to express our deep gratitude to them. Furthermore, we wish to acknowledge and express our gratitude to the data collectors and study participants for their cooperation and willingness.

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School of Nursing, Mekelle University, Mekelle, Ethiopia

Gebrezabher Niguse Hailu, Muntaha Abdelkader & Feven Asfaw

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Contributions

Gebrezabher Niguse Hailu: Supervision, Transcription and translation, inception and design; Muntaha Abdelkader: Tape recording, transcription; Feven Asfaw: Taking note, transcription, translation, design; Hailemariam Atsbeha: Transcription, translation, analysis, inception and design.

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Correspondence to Gebrezabher Niguse Hailu .

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Ethical clearance has been received from Mekelle university, Intuitional review board (IRB). Informed consent was received from the study participants. Participants were fully informed about the study’s purpose, procedures, potential risks, and benefits before they decided to participate voluntarily. Participants’ personal information and data were kept confidential and only disclosed as required by legal and ethical guidelines.

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Hailu, G.N., Abdelkader, M., Asfaw, F. et al. Exploring the knowledge and skills for effective family caregiving in elderly home care: a qualitative study. BMC Geriatr 24 , 342 (2024). https://doi.org/10.1186/s12877-024-04924-3

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An iterative approach was used between data collection and data analysis, meaning that the interview guide underwent minor adjustments based on proceeding insights from earlier interviews in order to get richer data. Data analysis. All data were thematically analyzed, both inductively and deductively, supported by the software NVivo 12©.
Facilitators and barriers for lifestyle change in ...
The searches were done by the first author (GS) with close assistance from a health research librarian. The search strategy aimed to cover primary studies addressing the study population of interest, ... (NVivo qualitative data analysis software; Melbourne, Australia: QSR International Pty Ltd., 2018). Each study was read several times to ...
Qualitative analysis of mothers' perception related to the delivery of
The goal of the study was to evaluate maternal perception of antenatal information delivered in the setting of preterm births. A qualitative study was performed using semi-structured individual interviews of 15 mothers with a child born > 26-34 GW. Data analysis was based on a constant comparative method.
Building public engagement and access to palliative care and advance
Research evidence suggests that a lack of engagement with palliative care and advance care planning could be attributed to a lack of knowledge, presence of misconceptions and stigma within the general public. However, the importance of how death, dying and bereavement are viewed and experienced has been highlighted as an important aspect in enabling public health approaches to palliative care.
Transformational nurse leadership attributes in German hospitals
Using a qualitative study design, semi-structured interviews (n = 18) were conducted with nurse leaders, managers, and clinicians, in five German hospitals known as having started implementing Magnet® or Pathway® principles. The interviews were recorded and transcribed verbatim. Data were analyzed in Atlas.ti using content analysis.
Employing a Qualitative Description Approach in Health Care Research
Qualitative data analysis predominantly consists of content or thematic analyses, which are often erroneously used interchangeably (Miles et al., 2014).There are many similarities in the above approaches including searching for patterns and themes (Vaismoradi, Turunen, & Bondas, 2013) and both can be used with good effect in the analysis of ...
Indigenous people's experiences of primary health care in Canada: a
Once all included articles were identified, they performed an independent quality assessment using JBI's Critical Appraisal Checklist for Qualitative Research. Footnote 19. Data extraction and synthesis. All pertinent data from the included studies were then retrieved using the JBI data extraction tool.
Exploring the knowledge and skills for effective family caregiving in
Healthy aging is a constant process that improves the person's health and quality of life [].According to a UN estimate on the world's population outlook, by 2050, more than 63% of the world's population—or approximately 22% of all people—will be 60 years of age or older and more than 63% will reside in Africa [].Caregiving becomes increasingly complicated and difficult as people age ...

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Practical thematic analysis: a guide for multidisciplinary health services research teams engaging in qualitative analysis

Summary points

Key features and applications of practical thematic analysis

Step 2: Coding

Step 3: Theming

Applications

Familiarisation and memoing

Data saturation

Data saturation in context

Definition of coding

Building the coding team

Coding teams in context

Coding tools

Drafting effective codes

Code types in context

Developing the codebook

Assigning codes to the data

Quantitative coding in context

Definition of themes

Themes in context

Constructing meaningful themes

Thematic analysis session

Writing the report

Reporting in context

Avoiding common pitfalls

Weak themes

Unfocused analysis

Inappropriate quantification

Neglecting group dynamics

Insufficient time allocation

Strengths and limitations

Implications

Acknowledgments

Qualitative Research Methods in Health Services Research

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Collecting and Analyzing Qualitative Data

Semi-Structured Interviews

Visualization Methods

Selecting a Sample of Study Participants

Determining Sample Size

Recruiting Study Participants

Managing Qualitative Data

Condensing Qualitative Data

Displaying Qualitative Data

Drawing and Verifying Conclusions

Exit Notification / Disclaimer Policy

Qualitative Data Analysis for Health Services Research: Developing Taxonomy, Themes, and Theory

Data Sources and Design

Principle Findings

Conclusions

WHY QUALITATIVE RESEARCH?

TYPES OF QUALITATIVE ANALYSIS

CONDUCTING THE ANALYSIS

Reading for Overall Understanding

Coding Qualitative Data

Developing the Code Structure

Grounded Theory Approach to Developing Code Structure

More Deductive Approaches to Developing Code Structure

An Integrated Approach to Developing Code Structure

Finalizing and Applying the Code Structure

Applying the Finalized Code Structure

GENERATING RESULTS

Acknowledgments

How would you describe a mentally healthy college student based on Chinese culture? A qualitative research from the perspective of college students

Conclusions

The development of the interview outline

Participant recruitment and selection

The finalization of the interview outline

Data collection and analysis