peer review in qualitative research

Criteria for Good Qualitative Research: A Comprehensive Review

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• Published: 18 September 2021
• Volume 31 , pages 679–689, ( 2022 )

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This review aims to synthesize a published set of evaluative criteria for good qualitative research. The aim is to shed light on existing standards for assessing the rigor of qualitative research encompassing a range of epistemological and ontological standpoints. Using a systematic search strategy, published journal articles that deliberate criteria for rigorous research were identified. Then, references of relevant articles were surveyed to find noteworthy, distinct, and well-defined pointers to good qualitative research. This review presents an investigative assessment of the pivotal features in qualitative research that can permit the readers to pass judgment on its quality and to condemn it as good research when objectively and adequately utilized. Overall, this review underlines the crux of qualitative research and accentuates the necessity to evaluate such research by the very tenets of its being. It also offers some prospects and recommendations to improve the quality of qualitative research. Based on the findings of this review, it is concluded that quality criteria are the aftereffect of socio-institutional procedures and existing paradigmatic conducts. Owing to the paradigmatic diversity of qualitative research, a single and specific set of quality criteria is neither feasible nor anticipated. Since qualitative research is not a cohesive discipline, researchers need to educate and familiarize themselves with applicable norms and decisive factors to evaluate qualitative research from within its theoretical and methodological framework of origin.

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Introduction

“… It is important to regularly dialogue about what makes for good qualitative research” (Tracy, 2010 , p. 837)

To decide what represents good qualitative research is highly debatable. There are numerous methods that are contained within qualitative research and that are established on diverse philosophical perspectives. Bryman et al., ( 2008 , p. 262) suggest that “It is widely assumed that whereas quality criteria for quantitative research are well‐known and widely agreed, this is not the case for qualitative research.” Hence, the question “how to evaluate the quality of qualitative research” has been continuously debated. There are many areas of science and technology wherein these debates on the assessment of qualitative research have taken place. Examples include various areas of psychology: general psychology (Madill et al., 2000 ); counseling psychology (Morrow, 2005 ); and clinical psychology (Barker & Pistrang, 2005 ), and other disciplines of social sciences: social policy (Bryman et al., 2008 ); health research (Sparkes, 2001 ); business and management research (Johnson et al., 2006 ); information systems (Klein & Myers, 1999 ); and environmental studies (Reid & Gough, 2000 ). In the literature, these debates are enthused by the impression that the blanket application of criteria for good qualitative research developed around the positivist paradigm is improper. Such debates are based on the wide range of philosophical backgrounds within which qualitative research is conducted (e.g., Sandberg, 2000 ; Schwandt, 1996 ). The existence of methodological diversity led to the formulation of different sets of criteria applicable to qualitative research.

Among qualitative researchers, the dilemma of governing the measures to assess the quality of research is not a new phenomenon, especially when the virtuous triad of objectivity, reliability, and validity (Spencer et al., 2004 ) are not adequate. Occasionally, the criteria of quantitative research are used to evaluate qualitative research (Cohen & Crabtree, 2008 ; Lather, 2004 ). Indeed, Howe ( 2004 ) claims that the prevailing paradigm in educational research is scientifically based experimental research. Hypotheses and conjectures about the preeminence of quantitative research can weaken the worth and usefulness of qualitative research by neglecting the prominence of harmonizing match for purpose on research paradigm, the epistemological stance of the researcher, and the choice of methodology. Researchers have been reprimanded concerning this in “paradigmatic controversies, contradictions, and emerging confluences” (Lincoln & Guba, 2000 ).

In general, qualitative research tends to come from a very different paradigmatic stance and intrinsically demands distinctive and out-of-the-ordinary criteria for evaluating good research and varieties of research contributions that can be made. This review attempts to present a series of evaluative criteria for qualitative researchers, arguing that their choice of criteria needs to be compatible with the unique nature of the research in question (its methodology, aims, and assumptions). This review aims to assist researchers in identifying some of the indispensable features or markers of high-quality qualitative research. In a nutshell, the purpose of this systematic literature review is to analyze the existing knowledge on high-quality qualitative research and to verify the existence of research studies dealing with the critical assessment of qualitative research based on the concept of diverse paradigmatic stances. Contrary to the existing reviews, this review also suggests some critical directions to follow to improve the quality of qualitative research in different epistemological and ontological perspectives. This review is also intended to provide guidelines for the acceleration of future developments and dialogues among qualitative researchers in the context of assessing the qualitative research.

The rest of this review article is structured in the following fashion: Sect.  Methods describes the method followed for performing this review. Section Criteria for Evaluating Qualitative Studies provides a comprehensive description of the criteria for evaluating qualitative studies. This section is followed by a summary of the strategies to improve the quality of qualitative research in Sect.  Improving Quality: Strategies . Section  How to Assess the Quality of the Research Findings? provides details on how to assess the quality of the research findings. After that, some of the quality checklists (as tools to evaluate quality) are discussed in Sect.  Quality Checklists: Tools for Assessing the Quality . At last, the review ends with the concluding remarks presented in Sect.  Conclusions, Future Directions and Outlook . Some prospects in qualitative research for enhancing its quality and usefulness in the social and techno-scientific research community are also presented in Sect.  Conclusions, Future Directions and Outlook .

For this review, a comprehensive literature search was performed from many databases using generic search terms such as Qualitative Research , Criteria , etc . The following databases were chosen for the literature search based on the high number of results: IEEE Explore, ScienceDirect, PubMed, Google Scholar, and Web of Science. The following keywords (and their combinations using Boolean connectives OR/AND) were adopted for the literature search: qualitative research, criteria, quality, assessment, and validity. The synonyms for these keywords were collected and arranged in a logical structure (see Table 1 ). All publications in journals and conference proceedings later than 1950 till 2021 were considered for the search. Other articles extracted from the references of the papers identified in the electronic search were also included. A large number of publications on qualitative research were retrieved during the initial screening. Hence, to include the searches with the main focus on criteria for good qualitative research, an inclusion criterion was utilized in the search string.

From the selected databases, the search retrieved a total of 765 publications. Then, the duplicate records were removed. After that, based on the title and abstract, the remaining 426 publications were screened for their relevance by using the following inclusion and exclusion criteria (see Table 2 ). Publications focusing on evaluation criteria for good qualitative research were included, whereas those works which delivered theoretical concepts on qualitative research were excluded. Based on the screening and eligibility, 45 research articles were identified that offered explicit criteria for evaluating the quality of qualitative research and were found to be relevant to this review.

Figure  1 illustrates the complete review process in the form of PRISMA flow diagram. PRISMA, i.e., “preferred reporting items for systematic reviews and meta-analyses” is employed in systematic reviews to refine the quality of reporting.

PRISMA flow diagram illustrating the search and inclusion process. N represents the number of records

Criteria for Evaluating Qualitative Studies

Fundamental criteria: general research quality.

Various researchers have put forward criteria for evaluating qualitative research, which have been summarized in Table 3 . Also, the criteria outlined in Table 4 effectively deliver the various approaches to evaluate and assess the quality of qualitative work. The entries in Table 4 are based on Tracy’s “Eight big‐tent criteria for excellent qualitative research” (Tracy, 2010 ). Tracy argues that high-quality qualitative work should formulate criteria focusing on the worthiness, relevance, timeliness, significance, morality, and practicality of the research topic, and the ethical stance of the research itself. Researchers have also suggested a series of questions as guiding principles to assess the quality of a qualitative study (Mays & Pope, 2020 ). Nassaji ( 2020 ) argues that good qualitative research should be robust, well informed, and thoroughly documented.

Qualitative Research: Interpretive Paradigms

All qualitative researchers follow highly abstract principles which bring together beliefs about ontology, epistemology, and methodology. These beliefs govern how the researcher perceives and acts. The net, which encompasses the researcher’s epistemological, ontological, and methodological premises, is referred to as a paradigm, or an interpretive structure, a “Basic set of beliefs that guides action” (Guba, 1990 ). Four major interpretive paradigms structure the qualitative research: positivist and postpositivist, constructivist interpretive, critical (Marxist, emancipatory), and feminist poststructural. The complexity of these four abstract paradigms increases at the level of concrete, specific interpretive communities. Table 5 presents these paradigms and their assumptions, including their criteria for evaluating research, and the typical form that an interpretive or theoretical statement assumes in each paradigm. Moreover, for evaluating qualitative research, quantitative conceptualizations of reliability and validity are proven to be incompatible (Horsburgh, 2003 ). In addition, a series of questions have been put forward in the literature to assist a reviewer (who is proficient in qualitative methods) for meticulous assessment and endorsement of qualitative research (Morse, 2003 ). Hammersley ( 2007 ) also suggests that guiding principles for qualitative research are advantageous, but methodological pluralism should not be simply acknowledged for all qualitative approaches. Seale ( 1999 ) also points out the significance of methodological cognizance in research studies.

Table 5 reflects that criteria for assessing the quality of qualitative research are the aftermath of socio-institutional practices and existing paradigmatic standpoints. Owing to the paradigmatic diversity of qualitative research, a single set of quality criteria is neither possible nor desirable. Hence, the researchers must be reflexive about the criteria they use in the various roles they play within their research community.

Improving Quality: Strategies

Another critical question is “How can the qualitative researchers ensure that the abovementioned quality criteria can be met?” Lincoln and Guba ( 1986 ) delineated several strategies to intensify each criteria of trustworthiness. Other researchers (Merriam & Tisdell, 2016 ; Shenton, 2004 ) also presented such strategies. A brief description of these strategies is shown in Table 6 .

It is worth mentioning that generalizability is also an integral part of qualitative research (Hays & McKibben, 2021 ). In general, the guiding principle pertaining to generalizability speaks about inducing and comprehending knowledge to synthesize interpretive components of an underlying context. Table 7 summarizes the main metasynthesis steps required to ascertain generalizability in qualitative research.

Figure  2 reflects the crucial components of a conceptual framework and their contribution to decisions regarding research design, implementation, and applications of results to future thinking, study, and practice (Johnson et al., 2020 ). The synergy and interrelationship of these components signifies their role to different stances of a qualitative research study.

Essential elements of a conceptual framework

In a nutshell, to assess the rationale of a study, its conceptual framework and research question(s), quality criteria must take account of the following: lucid context for the problem statement in the introduction; well-articulated research problems and questions; precise conceptual framework; distinct research purpose; and clear presentation and investigation of the paradigms. These criteria would expedite the quality of qualitative research.

How to Assess the Quality of the Research Findings?

The inclusion of quotes or similar research data enhances the confirmability in the write-up of the findings. The use of expressions (for instance, “80% of all respondents agreed that” or “only one of the interviewees mentioned that”) may also quantify qualitative findings (Stenfors et al., 2020 ). On the other hand, the persuasive reason for “why this may not help in intensifying the research” has also been provided (Monrouxe & Rees, 2020 ). Further, the Discussion and Conclusion sections of an article also prove robust markers of high-quality qualitative research, as elucidated in Table 8 .

Quality Checklists: Tools for Assessing the Quality

Numerous checklists are available to speed up the assessment of the quality of qualitative research. However, if used uncritically and recklessly concerning the research context, these checklists may be counterproductive. I recommend that such lists and guiding principles may assist in pinpointing the markers of high-quality qualitative research. However, considering enormous variations in the authors’ theoretical and philosophical contexts, I would emphasize that high dependability on such checklists may say little about whether the findings can be applied in your setting. A combination of such checklists might be appropriate for novice researchers. Some of these checklists are listed below:

The most commonly used framework is Consolidated Criteria for Reporting Qualitative Research (COREQ) (Tong et al., 2007 ). This framework is recommended by some journals to be followed by the authors during article submission.

Standards for Reporting Qualitative Research (SRQR) is another checklist that has been created particularly for medical education (O’Brien et al., 2014 ).

Also, Tracy ( 2010 ) and Critical Appraisal Skills Programme (CASP, 2021 ) offer criteria for qualitative research relevant across methods and approaches.

Further, researchers have also outlined different criteria as hallmarks of high-quality qualitative research. For instance, the “Road Trip Checklist” (Epp & Otnes, 2021 ) provides a quick reference to specific questions to address different elements of high-quality qualitative research.

Conclusions, Future Directions, and Outlook

This work presents a broad review of the criteria for good qualitative research. In addition, this article presents an exploratory analysis of the essential elements in qualitative research that can enable the readers of qualitative work to judge it as good research when objectively and adequately utilized. In this review, some of the essential markers that indicate high-quality qualitative research have been highlighted. I scope them narrowly to achieve rigor in qualitative research and note that they do not completely cover the broader considerations necessary for high-quality research. This review points out that a universal and versatile one-size-fits-all guideline for evaluating the quality of qualitative research does not exist. In other words, this review also emphasizes the non-existence of a set of common guidelines among qualitative researchers. In unison, this review reinforces that each qualitative approach should be treated uniquely on account of its own distinctive features for different epistemological and disciplinary positions. Owing to the sensitivity of the worth of qualitative research towards the specific context and the type of paradigmatic stance, researchers should themselves analyze what approaches can be and must be tailored to ensemble the distinct characteristics of the phenomenon under investigation. Although this article does not assert to put forward a magic bullet and to provide a one-stop solution for dealing with dilemmas about how, why, or whether to evaluate the “goodness” of qualitative research, it offers a platform to assist the researchers in improving their qualitative studies. This work provides an assembly of concerns to reflect on, a series of questions to ask, and multiple sets of criteria to look at, when attempting to determine the quality of qualitative research. Overall, this review underlines the crux of qualitative research and accentuates the need to evaluate such research by the very tenets of its being. Bringing together the vital arguments and delineating the requirements that good qualitative research should satisfy, this review strives to equip the researchers as well as reviewers to make well-versed judgment about the worth and significance of the qualitative research under scrutiny. In a nutshell, a comprehensive portrayal of the research process (from the context of research to the research objectives, research questions and design, speculative foundations, and from approaches of collecting data to analyzing the results, to deriving inferences) frequently proliferates the quality of a qualitative research.

Prospects : A Road Ahead for Qualitative Research

Irrefutably, qualitative research is a vivacious and evolving discipline wherein different epistemological and disciplinary positions have their own characteristics and importance. In addition, not surprisingly, owing to the sprouting and varied features of qualitative research, no consensus has been pulled off till date. Researchers have reflected various concerns and proposed several recommendations for editors and reviewers on conducting reviews of critical qualitative research (Levitt et al., 2021 ; McGinley et al., 2021 ). Following are some prospects and a few recommendations put forward towards the maturation of qualitative research and its quality evaluation:

In general, most of the manuscript and grant reviewers are not qualitative experts. Hence, it is more likely that they would prefer to adopt a broad set of criteria. However, researchers and reviewers need to keep in mind that it is inappropriate to utilize the same approaches and conducts among all qualitative research. Therefore, future work needs to focus on educating researchers and reviewers about the criteria to evaluate qualitative research from within the suitable theoretical and methodological context.

There is an urgent need to refurbish and augment critical assessment of some well-known and widely accepted tools (including checklists such as COREQ, SRQR) to interrogate their applicability on different aspects (along with their epistemological ramifications).

Efforts should be made towards creating more space for creativity, experimentation, and a dialogue between the diverse traditions of qualitative research. This would potentially help to avoid the enforcement of one's own set of quality criteria on the work carried out by others.

Moreover, journal reviewers need to be aware of various methodological practices and philosophical debates.

It is pivotal to highlight the expressions and considerations of qualitative researchers and bring them into a more open and transparent dialogue about assessing qualitative research in techno-scientific, academic, sociocultural, and political rooms.

Frequent debates on the use of evaluative criteria are required to solve some potentially resolved issues (including the applicability of a single set of criteria in multi-disciplinary aspects). Such debates would not only benefit the group of qualitative researchers themselves, but primarily assist in augmenting the well-being and vivacity of the entire discipline.

To conclude, I speculate that the criteria, and my perspective, may transfer to other methods, approaches, and contexts. I hope that they spark dialog and debate – about criteria for excellent qualitative research and the underpinnings of the discipline more broadly – and, therefore, help improve the quality of a qualitative study. Further, I anticipate that this review will assist the researchers to contemplate on the quality of their own research, to substantiate research design and help the reviewers to review qualitative research for journals. On a final note, I pinpoint the need to formulate a framework (encompassing the prerequisites of a qualitative study) by the cohesive efforts of qualitative researchers of different disciplines with different theoretic-paradigmatic origins. I believe that tailoring such a framework (of guiding principles) paves the way for qualitative researchers to consolidate the status of qualitative research in the wide-ranging open science debate. Dialogue on this issue across different approaches is crucial for the impending prospects of socio-techno-educational research.

Amin, M. E. K., Nørgaard, L. S., Cavaco, A. M., Witry, M. J., Hillman, L., Cernasev, A., & Desselle, S. P. (2020). Establishing trustworthiness and authenticity in qualitative pharmacy research. Research in Social and Administrative Pharmacy, 16 (10), 1472–1482.

Article   Google Scholar  

Barker, C., & Pistrang, N. (2005). Quality criteria under methodological pluralism: Implications for conducting and evaluating research. American Journal of Community Psychology, 35 (3–4), 201–212.

Bryman, A., Becker, S., & Sempik, J. (2008). Quality criteria for quantitative, qualitative and mixed methods research: A view from social policy. International Journal of Social Research Methodology, 11 (4), 261–276.

Caelli, K., Ray, L., & Mill, J. (2003). ‘Clear as mud’: Toward greater clarity in generic qualitative research. International Journal of Qualitative Methods, 2 (2), 1–13.

CASP (2021). CASP checklists. Retrieved May 2021 from https://casp-uk.net/casp-tools-checklists/

Cohen, D. J., & Crabtree, B. F. (2008). Evaluative criteria for qualitative research in health care: Controversies and recommendations. The Annals of Family Medicine, 6 (4), 331–339.

Denzin, N. K., & Lincoln, Y. S. (2005). Introduction: The discipline and practice of qualitative research. In N. K. Denzin & Y. S. Lincoln (Eds.), The sage handbook of qualitative research (pp. 1–32). Sage Publications Ltd.

Google Scholar  

Elliott, R., Fischer, C. T., & Rennie, D. L. (1999). Evolving guidelines for publication of qualitative research studies in psychology and related fields. British Journal of Clinical Psychology, 38 (3), 215–229.

Epp, A. M., & Otnes, C. C. (2021). High-quality qualitative research: Getting into gear. Journal of Service Research . https://doi.org/10.1177/1094670520961445

Guba, E. G. (1990). The paradigm dialog. In Alternative paradigms conference, mar, 1989, Indiana u, school of education, San Francisco, ca, us . Sage Publications, Inc.

Hammersley, M. (2007). The issue of quality in qualitative research. International Journal of Research and Method in Education, 30 (3), 287–305.

Haven, T. L., Errington, T. M., Gleditsch, K. S., van Grootel, L., Jacobs, A. M., Kern, F. G., & Mokkink, L. B. (2020). Preregistering qualitative research: A Delphi study. International Journal of Qualitative Methods, 19 , 1609406920976417.

Hays, D. G., & McKibben, W. B. (2021). Promoting rigorous research: Generalizability and qualitative research. Journal of Counseling and Development, 99 (2), 178–188.

Horsburgh, D. (2003). Evaluation of qualitative research. Journal of Clinical Nursing, 12 (2), 307–312.

Howe, K. R. (2004). A critique of experimentalism. Qualitative Inquiry, 10 (1), 42–46.

Johnson, J. L., Adkins, D., & Chauvin, S. (2020). A review of the quality indicators of rigor in qualitative research. American Journal of Pharmaceutical Education, 84 (1), 7120.

Johnson, P., Buehring, A., Cassell, C., & Symon, G. (2006). Evaluating qualitative management research: Towards a contingent criteriology. International Journal of Management Reviews, 8 (3), 131–156.

Klein, H. K., & Myers, M. D. (1999). A set of principles for conducting and evaluating interpretive field studies in information systems. MIS Quarterly, 23 (1), 67–93.

Lather, P. (2004). This is your father’s paradigm: Government intrusion and the case of qualitative research in education. Qualitative Inquiry, 10 (1), 15–34.

Levitt, H. M., Morrill, Z., Collins, K. M., & Rizo, J. L. (2021). The methodological integrity of critical qualitative research: Principles to support design and research review. Journal of Counseling Psychology, 68 (3), 357.

Lincoln, Y. S., & Guba, E. G. (1986). But is it rigorous? Trustworthiness and authenticity in naturalistic evaluation. New Directions for Program Evaluation, 1986 (30), 73–84.

Lincoln, Y. S., & Guba, E. G. (2000). Paradigmatic controversies, contradictions and emerging confluences. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research (2nd ed., pp. 163–188). Sage Publications.

Madill, A., Jordan, A., & Shirley, C. (2000). Objectivity and reliability in qualitative analysis: Realist, contextualist and radical constructionist epistemologies. British Journal of Psychology, 91 (1), 1–20.

Mays, N., & Pope, C. (2020). Quality in qualitative research. Qualitative Research in Health Care . https://doi.org/10.1002/9781119410867.ch15

McGinley, S., Wei, W., Zhang, L., & Zheng, Y. (2021). The state of qualitative research in hospitality: A 5-year review 2014 to 2019. Cornell Hospitality Quarterly, 62 (1), 8–20.

Merriam, S., & Tisdell, E. (2016). Qualitative research: A guide to design and implementation. San Francisco, US.

Meyer, M., & Dykes, J. (2019). Criteria for rigor in visualization design study. IEEE Transactions on Visualization and Computer Graphics, 26 (1), 87–97.

Monrouxe, L. V., & Rees, C. E. (2020). When I say… quantification in qualitative research. Medical Education, 54 (3), 186–187.

Morrow, S. L. (2005). Quality and trustworthiness in qualitative research in counseling psychology. Journal of Counseling Psychology, 52 (2), 250.

Morse, J. M. (2003). A review committee’s guide for evaluating qualitative proposals. Qualitative Health Research, 13 (6), 833–851.

Nassaji, H. (2020). Good qualitative research. Language Teaching Research, 24 (4), 427–431.

O’Brien, B. C., Harris, I. B., Beckman, T. J., Reed, D. A., & Cook, D. A. (2014). Standards for reporting qualitative research: A synthesis of recommendations. Academic Medicine, 89 (9), 1245–1251.

O’Connor, C., & Joffe, H. (2020). Intercoder reliability in qualitative research: Debates and practical guidelines. International Journal of Qualitative Methods, 19 , 1609406919899220.

Reid, A., & Gough, S. (2000). Guidelines for reporting and evaluating qualitative research: What are the alternatives? Environmental Education Research, 6 (1), 59–91.

Rocco, T. S. (2010). Criteria for evaluating qualitative studies. Human Resource Development International . https://doi.org/10.1080/13678868.2010.501959

Sandberg, J. (2000). Understanding human competence at work: An interpretative approach. Academy of Management Journal, 43 (1), 9–25.

Schwandt, T. A. (1996). Farewell to criteriology. Qualitative Inquiry, 2 (1), 58–72.

Seale, C. (1999). Quality in qualitative research. Qualitative Inquiry, 5 (4), 465–478.

Shenton, A. K. (2004). Strategies for ensuring trustworthiness in qualitative research projects. Education for Information, 22 (2), 63–75.

Sparkes, A. C. (2001). Myth 94: Qualitative health researchers will agree about validity. Qualitative Health Research, 11 (4), 538–552.

Spencer, L., Ritchie, J., Lewis, J., & Dillon, L. (2004). Quality in qualitative evaluation: A framework for assessing research evidence.

Stenfors, T., Kajamaa, A., & Bennett, D. (2020). How to assess the quality of qualitative research. The Clinical Teacher, 17 (6), 596–599.

Taylor, E. W., Beck, J., & Ainsworth, E. (2001). Publishing qualitative adult education research: A peer review perspective. Studies in the Education of Adults, 33 (2), 163–179.

Tong, A., Sainsbury, P., & Craig, J. (2007). Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19 (6), 349–357.

Tracy, S. J. (2010). Qualitative quality: Eight “big-tent” criteria for excellent qualitative research. Qualitative Inquiry, 16 (10), 837–851.

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Yadav, D. Criteria for Good Qualitative Research: A Comprehensive Review. Asia-Pacific Edu Res 31 , 679–689 (2022). https://doi.org/10.1007/s40299-021-00619-0

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Article Contents

Introduction, when to use qualitative research, how to judge qualitative research, conclusions, authors' roles, conflict of interest.

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Qualitative research methods: when to use them and how to judge them

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K. Hammarberg, M. Kirkman, S. de Lacey, Qualitative research methods: when to use them and how to judge them, Human Reproduction , Volume 31, Issue 3, March 2016, Pages 498–501, https://doi.org/10.1093/humrep/dev334

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In March 2015, an impressive set of guidelines for best practice on how to incorporate psychosocial care in routine infertility care was published by the ESHRE Psychology and Counselling Guideline Development Group ( ESHRE Psychology and Counselling Guideline Development Group, 2015 ). The authors report that the guidelines are based on a comprehensive review of the literature and we congratulate them on their meticulous compilation of evidence into a clinically useful document. However, when we read the methodology section, we were baffled and disappointed to find that evidence from research using qualitative methods was not included in the formulation of the guidelines. Despite stating that ‘qualitative research has significant value to assess the lived experience of infertility and fertility treatment’, the group excluded this body of evidence because qualitative research is ‘not generally hypothesis-driven and not objective/neutral, as the researcher puts him/herself in the position of the participant to understand how the world is from the person's perspective’.

Qualitative and quantitative research methods are often juxtaposed as representing two different world views. In quantitative circles, qualitative research is commonly viewed with suspicion and considered lightweight because it involves small samples which may not be representative of the broader population, it is seen as not objective, and the results are assessed as biased by the researchers' own experiences or opinions. In qualitative circles, quantitative research can be dismissed as over-simplifying individual experience in the cause of generalisation, failing to acknowledge researcher biases and expectations in research design, and requiring guesswork to understand the human meaning of aggregate data.

As social scientists who investigate psychosocial aspects of human reproduction, we use qualitative and quantitative methods, separately or together, depending on the research question. The crucial part is to know when to use what method.

The peer-review process is a pillar of scientific publishing. One of the important roles of reviewers is to assess the scientific rigour of the studies from which authors draw their conclusions. If rigour is lacking, the paper should not be published. As with research using quantitative methods, research using qualitative methods is home to the good, the bad and the ugly. It is essential that reviewers know the difference. Rejection letters are hard to take but more often than not they are based on legitimate critique. However, from time to time it is obvious that the reviewer has little grasp of what constitutes rigour or quality in qualitative research. The first author (K.H.) recently submitted a paper that reported findings from a qualitative study about fertility-related knowledge and information-seeking behaviour among people of reproductive age. In the rejection letter one of the reviewers (not from Human Reproduction ) lamented, ‘Even for a qualitative study, I would expect that some form of confidence interval and paired t-tables analysis, etc. be used to analyse the significance of results'. This comment reveals the reviewer's inappropriate application to qualitative research of criteria relevant only to quantitative research.

In this commentary, we give illustrative examples of questions most appropriately answered using qualitative methods and provide general advice about how to appraise the scientific rigour of qualitative studies. We hope this will help the journal's reviewers and readers appreciate the legitimate place of qualitative research and ensure we do not throw the baby out with the bath water by excluding or rejecting papers simply because they report the results of qualitative studies.

In psychosocial research, ‘quantitative’ research methods are appropriate when ‘factual’ data are required to answer the research question; when general or probability information is sought on opinions, attitudes, views, beliefs or preferences; when variables can be isolated and defined; when variables can be linked to form hypotheses before data collection; and when the question or problem is known, clear and unambiguous. Quantitative methods can reveal, for example, what percentage of the population supports assisted conception, their distribution by age, marital status, residential area and so on, as well as changes from one survey to the next ( Kovacs et al. , 2012 ); the number of donors and donor siblings located by parents of donor-conceived children ( Freeman et al. , 2009 ); and the relationship between the attitude of donor-conceived people to learning of their donor insemination conception and their family ‘type’ (one or two parents, lesbian or heterosexual parents; Beeson et al. , 2011 ).

In contrast, ‘qualitative’ methods are used to answer questions about experience, meaning and perspective, most often from the standpoint of the participant. These data are usually not amenable to counting or measuring. Qualitative research techniques include ‘small-group discussions’ for investigating beliefs, attitudes and concepts of normative behaviour; ‘semi-structured interviews’, to seek views on a focused topic or, with key informants, for background information or an institutional perspective; ‘in-depth interviews’ to understand a condition, experience, or event from a personal perspective; and ‘analysis of texts and documents’, such as government reports, media articles, websites or diaries, to learn about distributed or private knowledge.

Qualitative methods have been used to reveal, for example, potential problems in implementing a proposed trial of elective single embryo transfer, where small-group discussions enabled staff to explain their own resistance, leading to an amended approach ( Porter and Bhattacharya, 2005 ). Small-group discussions among assisted reproductive technology (ART) counsellors were used to investigate how the welfare principle is interpreted and practised by health professionals who must apply it in ART ( de Lacey et al. , 2015 ). When legislative change meant that gamete donors could seek identifying details of people conceived from their gametes, parents needed advice on how best to tell their children. Small-group discussions were convened to ask adolescents (not known to be donor-conceived) to reflect on how they would prefer to be told ( Kirkman et al. , 2007 ).

When a population cannot be identified, such as anonymous sperm donors from the 1980s, a qualitative approach with wide publicity can reach people who do not usually volunteer for research and reveal (for example) their attitudes to proposed legislation to remove anonymity with retrospective effect ( Hammarberg et al. , 2014 ). When researchers invite people to talk about their reflections on experience, they can sometimes learn more than they set out to discover. In describing their responses to proposed legislative change, participants also talked about people conceived as a result of their donations, demonstrating various constructions and expectations of relationships ( Kirkman et al. , 2014 ).

Interviews with parents in lesbian-parented families generated insight into the diverse meanings of the sperm donor in the creation and life of the family ( Wyverkens et al. , 2014 ). Oral and written interviews also revealed the embarrassment and ambivalence surrounding sperm donors evident in participants in donor-assisted conception ( Kirkman, 2004 ). The way in which parents conceptualise unused embryos and why they discard rather than donate was explored and understood via in-depth interviews, showing how and why the meaning of those embryos changed with parenthood ( de Lacey, 2005 ). In-depth interviews were also used to establish the intricate understanding by embryo donors and recipients of the meaning of embryo donation and the families built as a result ( Goedeke et al. , 2015 ).

It is possible to combine quantitative and qualitative methods, although great care should be taken to ensure that the theory behind each method is compatible and that the methods are being used for appropriate reasons. The two methods can be used sequentially (first a quantitative then a qualitative study or vice versa), where the first approach is used to facilitate the design of the second; they can be used in parallel as different approaches to the same question; or a dominant method may be enriched with a small component of an alternative method (such as qualitative interviews ‘nested’ in a large survey). It is important to note that free text in surveys represents qualitative data but does not constitute qualitative research. Qualitative and quantitative methods may be used together for corroboration (hoping for similar outcomes from both methods), elaboration (using qualitative data to explain or interpret quantitative data, or to demonstrate how the quantitative findings apply in particular cases), complementarity (where the qualitative and quantitative results differ but generate complementary insights) or contradiction (where qualitative and quantitative data lead to different conclusions). Each has its advantages and challenges ( Brannen, 2005 ).

Qualitative research is gaining increased momentum in the clinical setting and carries different criteria for evaluating its rigour or quality. Quantitative studies generally involve the systematic collection of data about a phenomenon, using standardized measures and statistical analysis. In contrast, qualitative studies involve the systematic collection, organization, description and interpretation of textual, verbal or visual data. The particular approach taken determines to a certain extent the criteria used for judging the quality of the report. However, research using qualitative methods can be evaluated ( Dixon-Woods et al. , 2006 ; Young et al. , 2014 ) and there are some generic guidelines for assessing qualitative research ( Kitto et al. , 2008 ).

Although the terms ‘reliability’ and ‘validity’ are contentious among qualitative researchers ( Lincoln and Guba, 1985 ) with some preferring ‘verification’, research integrity and robustness are as important in qualitative studies as they are in other forms of research. It is widely accepted that qualitative research should be ethical, important, intelligibly described, and use appropriate and rigorous methods ( Cohen and Crabtree, 2008 ). In research investigating data that can be counted or measured, replicability is essential. When other kinds of data are gathered in order to answer questions of personal or social meaning, we need to be able to capture real-life experiences, which cannot be identical from one person to the next. Furthermore, meaning is culturally determined and subject to evolutionary change. The way of explaining a phenomenon—such as what it means to use donated gametes—will vary, for example, according to the cultural significance of ‘blood’ or genes, interpretations of marital infidelity and religious constructs of sexual relationships and families. Culture may apply to a country, a community, or other actual or virtual group, and a person may be engaged at various levels of culture. In identifying meaning for members of a particular group, consistency may indeed be found from one research project to another. However, individuals within a cultural group may present different experiences and perceptions or transgress cultural expectations. That does not make them ‘wrong’ or invalidate the research. Rather, it offers insight into diversity and adds a piece to the puzzle to which other researchers also contribute.

In qualitative research the objective stance is obsolete, the researcher is the instrument, and ‘subjects’ become ‘participants’ who may contribute to data interpretation and analysis ( Denzin and Lincoln, 1998 ). Qualitative researchers defend the integrity of their work by different means: trustworthiness, credibility, applicability and consistency are the evaluative criteria ( Leininger, 1994 ).

Trustworthiness

A report of a qualitative study should contain the same robust procedural description as any other study. The purpose of the research, how it was conducted, procedural decisions, and details of data generation and management should be transparent and explicit. A reviewer should be able to follow the progression of events and decisions and understand their logic because there is adequate description, explanation and justification of the methodology and methods ( Kitto et al. , 2008 )

Credibility

Credibility is the criterion for evaluating the truth value or internal validity of qualitative research. A qualitative study is credible when its results, presented with adequate descriptions of context, are recognizable to people who share the experience and those who care for or treat them. As the instrument in qualitative research, the researcher defends its credibility through practices such as reflexivity (reflection on the influence of the researcher on the research), triangulation (where appropriate, answering the research question in several ways, such as through interviews, observation and documentary analysis) and substantial description of the interpretation process; verbatim quotations from the data are supplied to illustrate and support their interpretations ( Sandelowski, 1986 ). Where excerpts of data and interpretations are incongruent, the credibility of the study is in doubt.

Applicability

Applicability, or transferability of the research findings, is the criterion for evaluating external validity. A study is considered to meet the criterion of applicability when its findings can fit into contexts outside the study situation and when clinicians and researchers view the findings as meaningful and applicable in their own experiences.

Larger sample sizes do not produce greater applicability. Depth may be sacrificed to breadth or there may be too much data for adequate analysis. Sample sizes in qualitative research are typically small. The term ‘saturation’ is often used in reference to decisions about sample size in research using qualitative methods. Emerging from grounded theory, where filling theoretical categories is considered essential to the robustness of the developing theory, data saturation has been expanded to describe a situation where data tend towards repetition or where data cease to offer new directions and raise new questions ( Charmaz, 2005 ). However, the legitimacy of saturation as a generic marker of sampling adequacy has been questioned ( O'Reilly and Parker, 2013 ). Caution must be exercised to ensure that a commitment to saturation does not assume an ‘essence’ of an experience in which limited diversity is anticipated; each account is likely to be subtly different and each ‘sample’ will contribute to knowledge without telling the whole story. Increasingly, it is expected that researchers will report the kind of saturation they have applied and their criteria for recognising its achievement; an assessor will need to judge whether the choice is appropriate and consistent with the theoretical context within which the research has been conducted.

Sampling strategies are usually purposive, convenient, theoretical or snowballed. Maximum variation sampling may be used to seek representation of diverse perspectives on the topic. Homogeneous sampling may be used to recruit a group of participants with specified criteria. The threat of bias is irrelevant; participants are recruited and selected specifically because they can illuminate the phenomenon being studied. Rather than being predetermined by statistical power analysis, qualitative study samples are dependent on the nature of the data, the availability of participants and where those data take the investigator. Multiple data collections may also take place to obtain maximum insight into sensitive topics. For instance, the question of how decisions are made for embryo disposition may involve sampling within the patient group as well as from scientists, clinicians, counsellors and clinic administrators.

Consistency

Consistency, or dependability of the results, is the criterion for assessing reliability. This does not mean that the same result would necessarily be found in other contexts but that, given the same data, other researchers would find similar patterns. Researchers often seek maximum variation in the experience of a phenomenon, not only to illuminate it but also to discourage fulfilment of limited researcher expectations (for example, negative cases or instances that do not fit the emerging interpretation or theory should be actively sought and explored). Qualitative researchers sometimes describe the processes by which verification of the theoretical findings by another team member takes place ( Morse and Richards, 2002 ).

Research that uses qualitative methods is not, as it seems sometimes to be represented, the easy option, nor is it a collation of anecdotes. It usually involves a complex theoretical or philosophical framework. Rigorous analysis is conducted without the aid of straightforward mathematical rules. Researchers must demonstrate the validity of their analysis and conclusions, resulting in longer papers and occasional frustration with the word limits of appropriate journals. Nevertheless, we need the different kinds of evidence that is generated by qualitative methods. The experience of health, illness and medical intervention cannot always be counted and measured; researchers need to understand what they mean to individuals and groups. Knowledge gained from qualitative research methods can inform clinical practice, indicate how to support people living with chronic conditions and contribute to community education and awareness about people who are (for example) experiencing infertility or using assisted conception.

Each author drafted a section of the manuscript and the manuscript as a whole was reviewed and revised by all authors in consultation.

No external funding was either sought or obtained for this study.

The authors have no conflicts of interest to declare.

Beeson D , Jennings P , Kramer W . Offspring searching for their sperm donors: how family types shape the process . Hum Reprod 2011 ; 26 : 2415 – 2424 .

Google Scholar

Brannen J . Mixing methods: the entry of qualitative and quantitative approaches into the research process . Int J Soc Res Methodol 2005 ; 8 : 173 – 184 .

Charmaz K . Grounded Theory in the 21st century; applications for advancing social justice studies . In: Denzin NK , Lincoln YS (eds). The Sage Handbook of Qualitative Research . California : Sage Publications Inc. , 2005 .

Google Preview

Cohen D , Crabtree B . Evaluative criteria for qualitative research in health care: controversies and recommendations . Ann Fam Med 2008 ; 6 : 331 – 339 .

de Lacey S . Parent identity and ‘virtual’ children: why patients discard rather than donate unused embryos . Hum Reprod 2005 ; 20 : 1661 – 1669 .

de Lacey SL , Peterson K , McMillan J . Child interests in assisted reproductive technology: how is the welfare principle applied in practice? Hum Reprod 2015 ; 30 : 616 – 624 .

Denzin N , Lincoln Y . Entering the field of qualitative research . In: Denzin NK , Lincoln YS (eds). The Landscape of Qualitative Research: Theories and Issues . Thousand Oaks : Sage , 1998 , 1 – 34 .

Dixon-Woods M , Bonas S , Booth A , Jones DR , Miller T , Shaw RL , Smith JA , Young B . How can systematic reviews incorporate qualitative research? A critical perspective . Qual Res 2006 ; 6 : 27 – 44 .

ESHRE Psychology and Counselling Guideline Development Group . Routine Psychosocial Care in Infertility and Medically Assisted Reproduction: A Guide for Fertility Staff , 2015 . http://www.eshre.eu/Guidelines-and-Legal/Guidelines/Psychosocial-care-guideline.aspx .

Freeman T , Jadva V , Kramer W , Golombok S . Gamete donation: parents' experiences of searching for their child's donor siblings or donor . Hum Reprod 2009 ; 24 : 505 – 516 .

Goedeke S , Daniels K , Thorpe M , Du Preez E . Building extended families through embryo donation: the experiences of donors and recipients . Hum Reprod 2015 ; 30 : 2340 – 2350 .

Hammarberg K , Johnson L , Bourne K , Fisher J , Kirkman M . Proposed legislative change mandating retrospective release of identifying information: consultation with donors and Government response . Hum Reprod 2014 ; 29 : 286 – 292 .

Kirkman M . Saviours and satyrs: ambivalence in narrative meanings of sperm provision . Cult Health Sex 2004 ; 6 : 319 – 336 .

Kirkman M , Rosenthal D , Johnson L . Families working it out: adolescents' views on communicating about donor-assisted conception . Hum Reprod 2007 ; 22 : 2318 – 2324 .

Kirkman M , Bourne K , Fisher J , Johnson L , Hammarberg K . Gamete donors' expectations and experiences of contact with their donor offspring . Hum Reprod 2014 ; 29 : 731 – 738 .

Kitto S , Chesters J , Grbich C . Quality in qualitative research . Med J Aust 2008 ; 188 : 243 – 246 .

Kovacs GT , Morgan G , Levine M , McCrann J . The Australian community overwhelmingly approves IVF to treat subfertility, with increasing support over three decades . Aust N Z J Obstetr Gynaecol 2012 ; 52 : 302 – 304 .

Leininger M . Evaluation criteria and critique of qualitative research studies . In: Morse J (ed). Critical Issues in Qualitative Research Methods . Thousand Oaks : Sage , 1994 , 95 – 115 .

Lincoln YS , Guba EG . Naturalistic Inquiry . Newbury Park, CA : Sage Publications , 1985 .

Morse J , Richards L . Readme First for a Users Guide to Qualitative Methods . Thousand Oaks : Sage , 2002 .

O'Reilly M , Parker N . ‘Unsatisfactory saturation’: a critical exploration of the notion of saturated sample sizes in qualitative research . Qual Res 2013 ; 13 : 190 – 197 .

Porter M , Bhattacharya S . Investigation of staff and patients' opinions of a proposed trial of elective single embryo transfer . Hum Reprod 2005 ; 20 : 2523 – 2530 .

Sandelowski M . The problem of rigor in qualitative research . Adv Nurs Sci 1986 ; 8 : 27 – 37 .

Wyverkens E , Provoost V , Ravelingien A , De Sutter P , Pennings G , Buysse A . Beyond sperm cells: a qualitative study on constructed meanings of the sperm donor in lesbian families . Hum Reprod 2014 ; 29 : 1248 – 1254 .

Young K , Fisher J , Kirkman M . Women's experiences of endometriosis: a systematic review of qualitative research . J Fam Plann Reprod Health Care 2014 ; 41 : 225 – 234 .

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• Research article
• Open access
• Published: 18 May 2020

What feedback do reviewers give when reviewing qualitative manuscripts? A focused mapping review and synthesis

• Oliver Rudolf HERBER   ORCID: orcid.org/0000-0003-3041-4098 1 ,
• Caroline BRADBURY-JONES 2 ,
• Susanna BÖLING 3 ,
• Sarah COMBES 4 ,
• Julian HIRT 5 ,
• Yvonne KOOP 6 ,
• Ragnhild NYHAGEN 7 ,
• Jessica D. VELDHUIZEN 8 &
• Julie TAYLOR 2 , 9  

BMC Medical Research Methodology volume  20 , Article number:  122 ( 2020 ) Cite this article

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Peer review is at the heart of the scientific process. With the advent of digitisation, journals started to offer electronic articles or publishing online only. A new philosophy regarding the peer review process found its way into academia: the open peer review. Open peer review as practiced by BioMed Central ( BMC ) is a type of peer review where the names of authors and reviewers are disclosed and reviewer comments are published alongside the article. A number of articles have been published to assess peer reviews using quantitative research. However, no studies exist that used qualitative methods to analyse the content of reviewers’ comments.

A focused mapping review and synthesis (FMRS) was undertaken of manuscripts reporting qualitative research submitted to BMC open access journals from 1 January – 31 March 2018. Free-text reviewer comments were extracted from peer review reports using a 77-item classification system organised according to three key dimensions that represented common themes and sub-themes. A two stage analysis process was employed. First, frequency counts were undertaken that allowed revealing patterns across themes/sub-themes. Second, thematic analysis was conducted on selected themes of the narrative portion of reviewer reports.

A total of 107 manuscripts submitted to nine open-access journals were included in the FMRS. The frequency analysis revealed that among the 30 most frequently employed themes “writing criteria” (dimension II) is the top ranking theme, followed by comments in relation to the “methods” (dimension I). Besides that, some results suggest an underlying quantitative mindset of reviewers. Results are compared and contrasted in relation to established reporting guidelines for qualitative research to inform reviewers and authors of frequent feedback offered to enhance the quality of manuscripts.

Conclusions

This FMRS has highlighted some important issues that hold lessons for authors, reviewers and editors. We suggest modifying the current reporting guidelines by including a further item called “Degree of data transformation” to prompt authors and reviewers to make a judgment about the appropriateness of the degree of data transformation in relation to the chosen analysis method. Besides, we suggest that completion of a reporting checklist on submission becomes a requirement.

Peer Review reports

Peer review is at the heart of the scientific process. Reviewers independently examine a submitted manuscript and then recommend acceptance, rejection or – most frequently – revisions to be made before it gets published [ 1 ]. Editors rely on peer review to make decisions on which submissions warrant publication and to enhance quality standards. Typically, each manuscript is reviewed by two or three reviewers [ 2 ] who are chosen for their knowledge and expertise regarding the subject or methodology [ 3 ]. The history of peer review, often regarded as a “touchstone of modern evaluation of scientific quality” [ 4 ] is relatively short. For example, the British Medical Journal (now the BMJ ) was a pioneer when it established a system of external reviewers in 1893. But it was in the second half of the twentieth century that employing peers as reviewers became custom [ 5 ]. Then, in 1973 the prestigious scientific weekly Nature introduced a rigorous formal peer review system for every paper it printed [ 6 ].

Despite ever-growing concerns about its effectiveness, fairness and reliability [ 4 , 7 ], peer review as a central part of academic self-regulation is still considered the best available practice [ 8 ]. With the advent of digitisation in the late 1990s, scholarly publishing has changed dramatically with many journals starting to offer print as well as electronic articles or publishing online only [ 9 ]. The latter category includes for-profit journals such as BioMed Central ( BMC ) that have been online since their inception in 1999, with an ever evolving portfolio of currently over 300 peer-reviewed journals.

As compared to traditional print journals where individuals or libraries need to pay a fee for an annual subscription or for reading a specific article, open access journals such as BMC, PLoS ONE or BMJ Open are permanently free for everyone to read and download since the cost of publishing is paid by the author or an entity such as the university. Many, but not all, open access journals impose an article processing charge on the author, also known as the gold open access route, to cover the cost of publication. Depending on the journal and the publisher, article processing charges can range significantly between US$100 and US$5200 per article [ 10 , 11 ].

In the digital age, a new philosophy regarding the peer review process found its way into academia, questioning the anonymity of the closed system of peer-review as contrary to the demands for transparency [ 1 ]. The issue of reviewer bias, especially concerning gender and affiliation [ 12 ], led not only to the establishment of double-blind review but also to its extreme opposite: the open peer review system [ 8 ]. Although the term ‘open peer review’ has no standardised definition, scholars use the term to indicate that the identities of the authors and reviewers are disclosed and that reviewer reports are openly available [ 13 ]. In the late 1990s, the BMJ changed from a closed system of peer review to an open system [ 14 , 15 ]. During the same time, other publishers such as some journals in BMC followed the example of opening up their peer review.

While peer review reports have long been hidden from the public gaze [ 16 , 17 ], opening up the closed peer review system allows researchers to access reviewer comments, thus making it possible to study them. Since then, a number of articles have been published to assess reviews using quantitative research methods. For example, Landkroon et al. [ 18 ] assessed the quality of 247 reviews of 119 original articles using a 5-point Likert scale. Similarly, Henly and Dougherty [ 19 ] developed and applied a grading scale to assess the narrative portion of 464 reviews of 203 manuscripts using descriptive statistics. The retrospective cohort study by van Lent et al. [ 20 ] assessed peer review comments on drug trials from 246 manuscripts to investigate whether there is a relationship between the content of these comments and sponsorship using a generalised linear mixed model. Most recently, Davis et al. [ 21 ] evaluated reviewer grading forms for surgical journals with higher impact factors and compared them to surgical journals with lower impact factors using Fisher’s exact test.

Despite the readily available reviewer comments that are published alongside the final article of many open access journals, to the best of our knowledge no studies exist to date that used – besides quantitative methods – also qualitative methods to analyse the content of reviewers’ comments. Identifying (negative) reviewer comments will help authors to pay particular attention to these aspects and assist prospective qualitative researchers to understand the most common pitfalls when preparing their manuscript for submission. Thus, the aim of the study was to appraise the quality and nature of reviewers’ feedback in order to understand how reviewers engage with and influence the development of a qualitative manuscript. Our focus on qualitative research can be explained by the fact that we are passionate qualitative researchers with a history in determining the state of qualitative research in health and social science literature [ 22 ]. The following research questions were answered: (1) What are the frequencies of certain commentary types in manuscripts reporting on qualitative research? and (2) What are the nature of reviewers’ comments made on manuscripts reporting on qualitative research?

We conducted a focused mapping review and synthesis (FMRS) [ 22 , 23 , 24 , 25 ]. Most forms of review aim for breadth and exhaustive searches, but the FMRS searches within specific, pre-determined journals. While Platt [ 26 ] observed that ‘a number of studies have used samples of journal articles’, the distinctive feature of the FMRS is the purposive selection of journals. These are chosen for their likelihood to contain articles relevant to the field of inquiry – in this case qualitative research published in open access journals that operate an open peer-review process that involves posting the reviewer’s reports. It is these reports that we have analysed using thematic analysis techniques [ 27 ].

Currently there are over 70 BMC journals that have adopted open peer-review. The FMRS focused on reviewers’ reports published during the first quarter of 2018. Journals were selected using a three-stage process. First, we produced a list with all BMC journals that operate an open peer review process and will publish qualitative research articles ( n  = 62). Second, from this list we selected journals that are general fields of practice and non-disease specific ( n  = 15). Third, to ensure a sufficient number of qualitative articles, we excluded journals with less than 25 hits on the search term “qualitative” for the year 2018 (search date: 16 July 2018) because chances were considered too slim to contain sufficient articles of interest. At the end of the selection process, the following nine BMC journals were included in our synthesis: (1) BMC Complementary and Alternative Medicine , (2) BMC Family Practice , (3) BMC Health Services Research , (4) BMC Medical Education , (5) BMC Medical Ethics , (6) BMC Nursing , (7) BMC Public Health , (8) Health Research Policy and Systems , and (9) Implementation Science . Since these journals represent different subjects, a variety of qualitative papers written for different audiences was captured. Every article published within the timeframe was scrutinised against the inclusion and exclusion criteria (Table  1 ).

Development of the data extraction sheet

A validated instrument for the classification of reviewer comments does not exist [ 20 ]. Hence, a detailed classification system was developed and pilot tested considering previous research [ 20 ]. Our newly developed data extraction sheet consists of a 77-item classification system organised according to three dimensions: (1) scientific/technical content, (2) writing criteria/representation, and (3) technical criteria. It represents themes and sub-themes identified by reading reviewer comments from twelve articles published in open peer-review journals. For the development of the data extraction sheet, we randomly selected four articles containing qualitative research from each of the following three journals published between 2017 and 2018: BMC Nursing , BMC Family Practice and BMJ Open . We then analysed the reviews of manuscripts by systematically coding and categorising the reviewers’ free-text comments. Following the recommendation by Shashok [ 28 ], we initially organised the reviewer’s comments along two main dimensions, i.e., scientific content and writing criteria. Shashok [ 28 ] argues that when peer reviewers confuse content and writing, their feedback can be misunderstood by authors who may modify texts in unintentional ways to the detriment of the manuscript.

To check the comprehensiveness of our classification system, provisional themes and sub-themes were piloted using reviewer comments we had previously received from twelve of our own manuscripts that had been submitted to journals that operate blind peer-review. We wanted to account for potential differences in reviewers’ feedback (open vs. blind review). As a result of this quality enhancement procedure, three sub-themes and a further dimension (‘technical criteria’) were added. For reasons of clarity and comprehensibility, the dimension ‘scientific content’ was subdivided following the IMRaD structure. IMRaD is the most common organisational structure of an original research article comprising I ntroduction, M ethods, R esults a nd D iscussion [ 29 ]. Anchoring examples were provided for each theme/sub-theme. To account for reviewer comments unrelated to the IMRaD structure, a sub-category called ‘generic codes’ was created to collect more general comments. When reviewer comments could not be assigned to any of the existing themes/sub-themes, they were noted as “Miscellaneous”. Table  2 shows the final data extraction sheet including anchoring examples.

Data extraction procedure

Data extraction was accomplished by six doctoral students (coders). On average, each coder was allocated 18 articles. After reading the reviews, coders independently classified each comment using the classification system. In line with Day et al. [ 30 ] a reviewer comment was defined as “ a distinct statement or idea found in a review, regardless of whether that statement was presented in isolation or was included in a paragraph that contained several statements. ” Editor comments were not included. Reviewers’ comments were copied and pasted into the most appropriate item of the classification system following a set of pre-defined guidelines. For example, a reviewer comment could only be coded once by assigning it to the most appropriate theme/sub-theme. A separate data extraction sheet was used for each article. For the purpose of calibration, the first completed data extraction sheet from each coder together with the reviewer’s comments was sent to the study coordinator (ORH) who provided feedback on classifying the reviewer comments. The aim of the calibration was to ensure that all coders were working within the same parameters of understanding, to discuss the subtleties of the judgement process and create consensus regarding classifications. Although the assignment to specific themes/sub-themes is, by nature, a subjective process, difficult to assign comments were classified following discussion and agreement between coder and study coordinator to ensure reliability. Once all data extraction was completed, two experienced qualitative researchers (CB-J, JT) independently undertook a further calibration exercise of a random sub-sample of 20% of articles ( n  = 22) to ensure consistency across coders. Articles were selected using a random number generator. For these 22 articles, classification discrepancies were resolved by consensus between coders and experienced researchers. Finally, all individual data extraction sheets were collated to create a comprehensive Excel spreadsheet with over 8000 cells that allowed tallying the reviewer’s comments across manuscripts for the purpose of data analysis. For each manuscript, a reviewer could have several remarks related to one type of comment. However, each type of comment was scored only once per category.

Finally, reviewer comments were ‘quantitized’ [ 31 ] by applying programming language (Python) to Jupyter Notebook, an open-source web application, to perform frequency counts of free-text comments regarding the 77 items. Among other data manipulation, we sorted elements of arrays in descending order of frequency using Pandas, counted the number of studies in which a certain theme/sub-theme occurred, conducted distinct word searches using NLTK 3 or grouped data according to certain criteria. The calculation of frequencies is a way to unite the empirical precision of quantitative research with the descriptive precision of qualitative research [ 32 ]. This quantitative transformation of qualitative data allowed extracting more meaning from our spreadsheet through revealing patterns across themes/sub-themes, thus giving indicators about which of them to analyse using thematic analysis.

A total of 109 manuscripts submitted to nine open-access journals were included in the FMRS. When scrutinising the peer review reports, we noticed that on one occasion the reviewer’s comments were missing [ 33 ]. For the remaining 108 manuscripts, reviewer comments were accessible via the journal’s pre-publication history. On close inspection, however, it became apparent that one article did not contain qualitative research, thus leaving ultimately 107 articles to work with ( supplementary file ). Considering that each manuscript could potentially be reviewed by multiple reviewers and underwent at least one round of revision, the total number of reviewer reports analysed amounted to 347 containing collectively 1703 reviewer comments. The level of inter-rater agreement for the 22 articles included in the calibration exercise was 97%. Disagreement was, for example, in relation to coding a comment as “miscellaneous” or as “confirmation/approval (from reviewer)”. For 18 out of 22 articles, there was 100% agreement for all types of comments.

Variation in number of reviewers

The number of reviewers invited by the editor to review a submitted manuscript varied greatly within and among journals. While the majority of manuscripts across journals had been reviewed by two to three reviewers, there were also significant variations. For example, the manuscript submitted to BMC Medical Education by Burgess et al. [ 34 ] had been reviewed by five reviewers whereas the manuscript submitted to BMC Public Health by Lee and Lee [ 35 ] had been reviewed by one reviewer only. Even within journals there was a huge variation. Among our sample, BMC Public Health had the greatest variance ranging from one to four reviewers. Besides, it was noted that additional reviewers were called in not until the second or even third revision of the manuscript. A summary of key information on journals included in the FMRS is provided in Table  3 .

“Quantitizing” reviewer comments

The frequency analysis revealed that the number of articles in which a certain theme/sub-theme occurred ranged from 1 to 79. Across all 107 articles, the types of comments most frequently reported were in relation to generic themes. Reviewer comments regarding “Adding information/detail/nuances”, “Clarification needed”, “Further explanation required” and “Confirmation/approval (from reviewer)” were used in 79, 79, 66 and 63 articles, respectively. The four most frequently used themes/sub-themes are composed of generic codes from dimension I (“Scientific/technical content”). Leaving all generic codes aside, it became apparent that among the 30 most frequently employed themes “Writing criteria” (dimension II) is the top ranking theme, followed by comments in relation to the “Methods” (dimension I) (Table  4 ).

Subsequently, we present key qualitative findings regarding “Confirmation/approval from reviewers” (generic), “Sampling” and “Analysis process” (methods), “Robust/rich data analysis and “Themes/sub-themes” (results) as well as findings that suggest an underlying quantitative mindset of the reviewers.

Confirmation/approval from reviewers (generic)

The theme “confirmation/approval from reviewers” ranks third among the top 30 categories. A total of 63 manuscripts contained at least one reviewer comment related to this theme. Overall, reviewers maintained a respectful and affirmative rhetoric when providing feedback. The vast majority of reviewers began their report by stating that the manuscript was well written. The following is a typical example:

“Overall, the paper is well written, and theoretically informed.” Article #14.

Reviewers then continued to add explicit praise for aspects or sections that were particularly innovative and/or well constructed before they started to put forward any negative feedback.

Sampling (methods)

Across all 107 articles there were 34 reviewer comments in relation to the sampling technique(s). Two major categories were identified: (1) composition of the sample and (2) identification and justification of selected participants. Regarding the former, reviewers raised several concerns about how the sample was composed. For instance, one reviewer wanted to know the reason for female predominance in the study and why an entire focus group was composed of females only. Another reviewer expressed strong criticism on the composition of the sample since only young, educated and non-minority white British participants were included in the study. The reviewer commented:

“ So a typical patient was young, educated and non-minority White British? The research studies these days should be inclusive of diverse types of patients and excluding patients because of their age and ethnicity is extremely concerning to me. This assumption that these individuals will “find it more difficult to complete questionnaires” is concerning ” Article #40.

This raised concerns of potentially excluding important diverse perspectives – such as extreme or deviant cases – from other participants. Similarly, some reviewers expressed concerns that relevant groups of people were not interviewed, calling into question that the findings were theoretically saturated. In terms of the identification of participants, reviewers raised questions regarding how the authors obtained the necessary characteristics to achieve purposive sampling or why only certain groups of people were included for interviews. Besides that, reviewers criticised that some authors did not mention their inclusion/exclusion criteria for selecting participants or did not specify their sampling method. For example:

“The authors state that they recruited a purposive sample of patients for the interviews. Concerning which variables was this sampling purposive? Are there any studies informing the patient selection process?” Article #61.

Hence, reviewers requested more detailed information on how participants were selected and to clearly state the type of sampling. Apart from the two key categories, reviewers made additional comments in relation to data saturation, transferability of findings, limitations of certain sampling methods and criticised the lack of description of participants who were approached but refused to participate in the study.

Details of analysis process (methods)

In 60 out of 107 articles, reviewers made comments in relation to the data analysis. The vast majority of comments stressed that authors provided scarce information about the analysis process. Hence, reviewers requested a more detailed description of the specific analysis techniques employed so that readers can obtain a better understanding of how the analysis was done to judge the trustworthiness of the findings. To this end, reviewers frequently requested an explicit statement on whether the analysis was inductive or deductive or iterative or sequential. One reviewer wrote the following comment:

“Please elaborate more on the qualitative analysis. The authors indicate that they used ‘iterative’ approaches. While this is certainly laudable, it is important to know how they moved from codes to themes (e.g. inductively? deductively?)” Article #5.

Since there are many approaches to analysing qualitative data, reviewers demanded sufficient detail in relation to the underlying theoretical framework used to develop the coding scheme, the analytic process, the researchers’ background (e.g. profession), the number of coders, data handling, length of interviews and whether data saturation occurred. Over a dozen reviewer comments were specifically in relation to the identification of themes/sub-themes. Reviewers requested a more detailed description on how the themes/sub-themes were derived from codes and whether they were developed by a second researcher working independently from each other.

“I would have liked to read how their themes were generated, what they were and how they assured robust practices in qualitative data analysis”. Article #43.

Besides that, some reviewers were in the opinion that the approach to analysis has led to a surface-level penetration of the data which was reflected in the Results section where themes were underexplored (for more detail see “ Robust/rich data analysis” below). Finally, reviewer comments that occurred infrequently included questions concerning the inter-rater reliability, competing interpretations of data, the use of computer software or the original interview language.

Robust/rich data analysis (results)

Among the 30 reviewer comments related to this theme/sub-theme, three key facets were observed: (1) greater analytical depth required, (2) suggestions for further analysis, and (3) themes are underexplored. In relation to the first point, reviewers requested more in-depth data analysis to strengthen the quality of the manuscript. Reviewers were in the opinion that authors reproduced interview data (raw data) in a reduced form with minimal or no interpretation, thus leaving the interpretation to the reader. Other reviewers referred to manuscripts as preliminary drafts that need to be further analysed to achieve greater analytical depth of themes, make links between themes or identify variations between respondents. In relation to the second point, several reviewers offered suggestions for further analysis. They provided detailed information on how to further explore the data and what additional results they would like to see in the revised version (e.g. group comparison, gender analysis). The latter aspect goes hand in hand with the third point. Several reviewers pointed out that the findings were shallow, simplistic or superficial at best; lacking the detailed descriptions of complex accounts from participants. For example:

“The results of the study are mostly descriptive and there is limited analysis. There is also absence of thick description, which one would expect in a qualitative study”. Article #34.

Even after the first revision, some manuscripts still lacked detailed analysis as the following comment from the same reviewer illustrates:

“I believe that the results in the revised version are still mostly descriptive and that there is limited analysis”. Article #34, R1.

Other, less frequently mentioned reviewer comments included lack of deviant cases or absence of relationships between themes.

Themes/sub-themes (results)

In total, there were 24 reviewer comments in relation to themes/sub-themes. More than half of the comments fell into one of the three categories: (1) themes/sub-themes are not sufficiently supported by data, (2) example/excerpt does not fit the stated theme, and (3) use of insufficient quotes to support theme/sub-theme. In relation to the first category, reviewers largely criticised that the data provided were insufficient to warrant being called a theme. Reviewers requested to provide data “from more than just one participant” to substantiate a certain theme or criticised that only a short excerpt was provided to support a theme. The second category dealt with reviewer comments that questioned whether the excerpts provided actually reflected the essence of a theme/sub-theme presented in the results section. The following reviewer comment exemplifies the issue:

“The data themes seem valid, but the data and narratives used to illustrate that don’t seem to fit entirely under each sub-heading”. Article #99.

Some reviewers provided alternative suggestions on how to call a theme/sub-theme or advised the authors to rethink if excerpts might be better placed under a different theme. The third category concerns themes/sub-themes that are not sufficiently supported by participants’ quotes. Reviewers perceived direct quotes as evidence to support a certain theme or as a means to add strength to the theme as the following example illustrates:

“Please provide at least one quote from each school leader and one quote from children to support this theme, if possible. It would seem that most, if not all, themes should reflect data from each participant group”. Article #88.

Hence, the absence of quotes prompted reviewers to request at least one quote to justify the existence of that theme. The inclusion of a rich set of quotes was perceived as strength of a manuscript. Finally, less frequently raised reviewer comments related to the discrimination of similar themes, the presentation of quotes in tables (rather than under the appropriate theme headings), the lack of defining a theme and reducing the number of themes.

Quantitative mindset

Some reviewers who were appointed by journal editors to review a manuscript containing qualitative research evaluated the quality of the manuscript from a perspective of a quantitative research paradigm. Some reviewers not only used terminology that is attuned to quantitative research, but also their judgements were based on a quantitative mindset. In particular, there were a number of reviewer comments published in BMC Health Services Research , BMC Medical Education and BMC Family Practice that demonstrated an apparent lack of understanding of the principles underlying qualitative inquiry of the person providing the review. First, several reviewers seemed to have confused the concept of generalisability with the concept of representativeness inherently associated with the positivist tradition. For instance, reviewers erroneously raised concerns about whether interviewees were “representative” of the “final target population” and requested the provision of detailed demographic characteristics.

“Need to better describe how the patients are representative of patients with chronic heart failure in the Netherlands generally. The declaration that “a representative group of patients were recruited” would benefit from stating what they were representative of.” Article # 66.

Similarly, another reviewer wanted to know from the authors how they ensured that the qualitative analysis was done objectively.

“The reader would benefit from a detailed description of […] how did the investigators ensure that they were objective in their analysis – objectivity and trustworthiness?” Article #22.

Furthermore, despite the fact that the paradigm wars have largely come to an end, hostility has not ceased on all fronts. In some reviewers the dominance and superiority of the quantitative paradigm over the qualitative paradigm is still present as the following comment illustrates:

“The main question and methods of this article is largely qualitative and does not seem to have significant implications for clinical practice, thus it may not be suitable to publish in this journal.” Article #45.

Finally, one reviewer apologised at the outset of the reviewer’s report for being unable to judge the data analysis due to the absence of sufficient knowledge in qualitative research.

Overall, in this FMRS we found that reviewers maintained a respectful and affirmative rhetoric when providing feedback. Yet, the positive feedback did not overshadow any key negative points that needed to be addressed in order to increase the quality of the manuscript. However, it should not be taken for granted that all reviewers are as courteous and generous as the ones included in our particular review, because as Taylor and Bradbury-Jones [ 36 ] observed there are many examples where reviewers can be unhelpful and destructive in their comments.

A key finding of this FMRS is that reviewers are more inclined to comment on the writing rather than the methodological rigour of a manuscript. This is a matter of concern, because Altman [ 37 ] – the originator of the EQUATOR (Enhancing the Quality and Transparency of Health Research) Network – has pointed out: “Unless methodology is described the conclusions must be suspect”. If we are to advance the quality of qualitative research then we need to encourage clarity and depth in reporting the rigour of research.

When reviewers did comment on the methodological aspects of an article, issues frequently commented on by reviewers were in relation to sampling, data analysis, robust/rich data analysis as reflected in the findings and themes/sub-themes that are insufficiently supported. Considerable work has been undertaken over the past decade trying to improve the reporting standards of qualitative research through the dissemination of qualitatively oriented reporting guidelines such as the ‘Standards for Reporting Qualitative Research’ (SRQR) [ 38 ] or the ‘Consolidated Criteria for Reporting Qualitative Research’ (COREQ) [ 39 ] with the aim of improving transparency of qualitative research. Although these guidelines appear to be comprehensive, some important issues identified in our study are not mentioned or only dealt with somewhat superficially: sampling for example. Neither COREQ nor SRQR shed light on the appropriateness of the sample composition, i.e., to critically question whether all relevant groups of people have been identified as potential participants or whether extreme or deviant cases were sought.

Similarly, lack of in-depth data analysis has been identified as another weakness where uninterpreted (raw) data were presented as if they were findings. However, existing reporting guidelines are not sharp enough to distinguish between findings and data. While findings are researchers’ interpretations of the data they collected, data consist of empirical, uninterpreted material researchers offer as their findings [ 32 ]. Hence, we suggest modifying the current reporting guidelines by including a further item to the checklist called “Degree of data transformation”. The suggested checklist item might prompt both authors and reviewers to make a judgment about the degree to which data have been transformed, i.e., interpretively removed from data as given. The rationale for the new item is to raise authors’ and reviewers’ awareness for the appropriateness of the degree of data transformation in relation to the chosen analysis method. For example, findings derived from content analysis remain close to the data as they were given to the research; they are often organised into surface classification systems and summarised in brief text. Findings derived from grounded theory, however, should offer a coherent model or line of argument which addresses causality or the fundamental nature of events or experiences [ 32 ].

Besides that, some reviewers put forward comments that we refer to as aligning with a ‘quantitative mindset’. Such reviewers did not appear to understand that rather than aspiring to statistical representativeness, in qualitative research participants are selected purposefully for the contribution they can make towards the phenomenon under study [ 40 ]. Hence, the generalisability of qualitative findings beyond an immediate group of participants is judged by similarities between the time, place, people or other social contexts [ 41 ] rather than in relation to the comparability of the demographic variables. It is the fit of the topic or the comparability of the problem that is of concern [ 40 ].

The majority of issues that reviewers picked up on are already mentioned in reporting guidelines, so there is no reason why these were omitted by researchers. Many journals now insist on alignment with COREQ criteria, so there is an important question to be asked as to why this is not always happening. We suggest that completion of an established reporting checklist (e.g. COREQ, SRQR) on submission becomes a requirement.

In this FMRS we have made judgements about fellow peer reviewers and found their feedback to be constructive, but also, among some, we found some lack of grasp of the essence of the qualitative endeavor. Some reviewers did not seem to understand that objectivity and representative sampling are the antithesis of subjectivity, reflexivity and data saturation. We acknowledge though, that individual reviewers might have varying levels of experience and competence both in terms of qualitative research, but also in the reviewing process. We found one reviewer who apologised at the outset of the reviewer’s report for being unable to judge the data analysis due to their absence of sufficient knowledge in qualitative research. In line with Spigt and Arts [ 42 ], we appreciate the honesty of that reviewer for being transparent about their skillset. The lessons here we feel are for more experienced reviewers to offer support and reviewing mentorship to those who are less experienced and for reviewers to emulate the honesty of the reviewer as discussed here, by being open about their capabilities within the review process.

Based on our findings, we have a number of recommendations for both researchers and reviewers. For researchers reporting qualitative studies, we suggest that particular attention is paid to reporting of sampling techniques, both in the characteristics and composition of the sample, and how participants were selected. This is an issue that the reviewers in our FMRS picked up on, so forewarned is forearmed. But it is also crucially important that sampling matters are not glossed over, so this constitutes good practice in research reporting as well. Second, it seems that qualitative researchers do not give sufficient detail about analytic techniques and underlying theoretical frameworks. The latter has been pointed out before [ 25 ], but both these aspects were often the subject of reviewer comments.

Our recommendation for reviewers is simply to be honest. If qualitative research is not an area of expertise, then it is better to decline to undertake the review, than to apply a quantitative lens in the assessment of a qualitative piece of work. It is inappropriate to ask for details about validity and generalisability and shows a lack of respect to qualitative researchers. We are well beyond the arguments about quantitative versus qualitative [ 43 ]. It is totally appropriate to comment on background and findings and any obvious deficiencies. Finally, our recommendation to editors is a difficult one, because as editors ourselves we know how challenging it can be to find willing reviewers. When selecting reviewers however, it is as important to bear in mind the methodological aspects of an article and its subject, and to select reviewers with appropriate methodological expertise. Some journals make it a requirement for quantitative articles to be reviewed by a statistical expert and we think this is good practice. When it comes to qualitative articles however, the methodological expertise of reviewers may not be so stringently noted and applied. Editors could make a difference here and help to push up the quality of qualitative reviews.

Strengths and weaknesses

Since we had only access to reviewer’s comments of articles that were finally published in open access journals, we are unable to compare them to types of comments related to rejected submissions. Thus, this study was limited to manuscripts that were sent out for external peer review and were finally published. Furthermore, the chosen study design of analysing only reviewer comments of published articles with an open system of peer review did not allow direct comparison with reviewer comments derived from blind-review.

FMRS provides a snap-shot of a particular issue at one particular time [ 23 ]. To that end, findings might be different in another review undertaken in a different time period. However, as a contemporary profile of reviewing within qualitative research, the current findings provide useful insights for authors of qualitative reports and reviewers alike. Further research should focus on comparing reviewer comments taken from an open and closed system of peer review in order to identify similarities and differences between the two models of peer review.

A limitation is that we reviewed open access journals because this was the only way of accessing a range of comments. The alternative that we did consider was to use the feedback provided by reviewers on our own manuscripts. However, this would have lacked the transparency and traceability associated with this current FMRS, which we consider to be a strength. That said, there may be an inherent problem in having reviewed open access peer review comments, where both the author and reviewer are known. Reviewers are unable to ‘hide behind’ the anonymity of blind peer review and this might reflect, at least in part, why their comments as analysed for this review were overwhelmingly courteous and constructive. This is at odds with the comments that one of us has received as part of a blind peer review: ‘silly, silly, silly’ [ 36 ].

This FMRS has highlighted some important issues in the field of qualitative reviewing that hold lessons for authors, reviewers and editors. Authors of qualitative reports are called upon to follow guidelines on reporting and any amendments that these might contain as recommended by the findings of our review. Humility and transparency are required among reviewers when it comes to accepting to undertake a review and an honest appraisal of their capabilities in understanding the qualitative endeavor. Journal editors can assist this by thoughtful and judicious selection of reviewers. Ultimately, all those involved with the publication process can drive up the quality of individual qualitative articles and the synergy is such that this can make a significant impact on quality across the field.

Availability of data and materials

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request.

Abbreviations

BioMed central

British medical journal

Consolidated criteria for reporting qualitative research

Enhancing the quality and transparency of health research

Focused mapping review and synthesis

Introduction, methods, results and discussion

Natural language toolKit

Standards for reporting qualitative research

Gannon F. The essential role of peer review (editorial). EMBO Rep. 2001;21(91):743.

Article   Google Scholar  

Mungra P, Webber P. Peer review process in medical research publications: language and content comments. Engl Specif Purp. 2010;29:43–53.

Turcotte C, Drolet P, Girard M. Study design, originality, and overall consistency influence acceptance or rejection of manuscripts submitted to the journal. Can J Anaesth. 2004;51:549–56.

Van der Wall EE. Peer review under review: room for improvement? Neth Heart J. 2009;17:187.

Burnham JC. The evolution of editorial peer review. JAMA. 1990;263:1323–9.

Article   CAS   Google Scholar  

Baldwin M. Credibility, peer review, and Nature , 1945-1990. Notes Rec R Soc Lond. 2015;69:337–52.

Lee CJ, Sugimoto CR, Zhang G, Cronin B. Bias in peer review. J Assoc Inf Sci Technol. 2013;64:2–17.

Horbach SPJM, Halffman W. The changing forms and expectations of peer review. Res Integr Peer Rev. 2018;3:8.

Oermann MH, Nicoll LH, Chinn PL, Ashton KS, Conklin JL, Edie AH, et al. Quality of articles published in predatory nursing journals. Nurs Outlook. 2018;66:4–10.

University of Cambridge. How much do publishers charge for Open Access? (2019) https://www.openaccess.cam.ac.uk/paying-open-access/how-much-do-publishers-charge-open-access Accessed 26 Jun 2019.

Elsevier. Open access journals. (2018) https://www.elsevier.com/about/open-science/open-access/open-access-journals Accessed 28 Oct 2018.

Peters DP, Ceci SJ. Peer-review practices of psychological journals: the fate of published articles, submitted again. Behav Brain Sci. 1982;5:187–95.

Ross-Hellauer T. What is open peer review? A systematic review. F1000 Res. 2017;6:588.

Smith R. Opening up BMJ peer review. A beginning that should lead to complete transparency. BMJ. 1999;318:4–5.

Brown HM. Peer review should not be anonymous. BMJ. 2003;326:824.

Gosden H. “Thank you for your critical comments and helpful suggestions”: compliance and conflict in authors’ replies to referees’ comments in peer reviews of scientific research papers. Iberica. 2001;3:3–17.

Google Scholar  

Swales J. Occluded genres in the academy. In: Mauranen A, Ventola E, editors. Academic writing: intercultural and textual issues. Amsterdam: John Benjamins Publishing Company; 1996. p. 45–58.

Chapter   Google Scholar  

Landkroon AP, Euser AM, Veeken H, Hart W, Overbeke AJ. Quality assessment of reviewers' reports using a simple instrument. Obstet Gynecol. 2006;108:979–85.

Henly SJ, Dougherty MC. Quality of manuscript reviews in nursing research. Nurs Outlook. 2009;57:18–26.

Van Lent M, IntHout J, Out HJ. Peer review comments on drug trials submitted to medical journals differ depending on sponsorship, results and acceptance: a retrospective cohort study. BMJ Open. 2015. https://doi.org/10.1136/bmjopen-2015-007961 .

Davis CH, Bass BL, Behrns KE, Lillemoe KD, Garden OJ, Roh MS, et al. Reviewing the review: a qualitative assessment of the peer review process in surgical journals. Res Integr Peer Rev. 2018;3:4.

Bradbury-Jones C, Breckenridge J, Clark MT, Herber OR, Wagstaff C, Taylor J. The state of qualitative research in health and social science literature: a focused mapping review and synthesis. Int J Soc Res Methodol. 2017;20:627–45.

Bradbury-Jones C, Breckenridge J, Clark MT, Herber OR, Jones C, Taylor J. Advancing the science of literature reviewing in social research: the focused mapping review and synthesis. Int J Soc Res Methodol. 2019. https://doi.org/10.1080/13645579.2019.1576328 .

Taylor J, Bradbury-Jones C, Breckenridge J, Jones C, Herber OR. Risk of vicarious trauma in nursing research: a focused mapping review and synthesis. J Clin Nurs. 2016;25:2768–77.

Bradbury-Jones C, Taylor J, Herber OR. How theory is used and articulated in qualitative research: development of a new typology. Soc Sci Med. 2014;120:135–41.

Platt J. Using journal articles to measure the level of quantification in national sociologies. Int JSoc Res Methodol. 2016;19:31–49.

Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77–101.

Shashok K. Content and communication: how can peer review provide helpful feedback about the writing? BMC Med Res Methodol. 2008;8:3.

Hall GM. How to write a paper. 2nd ed. London: BMJ Publishing Group; 1998.

Day FC, Dl S, Todd C, Wears RL. The use of dedicated methodology and statistical reviewers for peer review: a content analysis of comments to authors made by methodology and regular reviewers. Ann Emerg Med. 2002;40:329–33.

Tashakkori A, Teddlie C. Mixed methodology: combining qualitative and quantitative approaches. London: Sage Publications; 1998.

Sandelowski M, Barroso J. Handbook for synthesizing qualitative research. New York: Springer Publishing Company; 2007.

Jonas K, Crutzen R, Krumeich A, Roman N, van den Borne B, Reddy P. Healthcare workers’ beliefs, motivations and behaviours affecting adequate provision of sexual and reproductive healthcare services to adolescents in Cape Town, South Africa: a qualitative study. BMC Health Serv Res. 2018;18:109.

Burgess A, Roberts C, Sureshkumar P, Mossman K. Multiple mini interview (MMI) for general practice training selection in Australia: interviewers’ motivation. BMC Med Educ. 2018;18:21.

Lee S-Y, Lee EE. Cancer screening in Koreans: a focus group approach. BMC Public Health. 2018;18:254.

Taylor J, Bradbury-Jones C. Writing a helpful journal review: application of the 6 C’s. J Clin Nurs. 2014;23:2695–7.

Altman D. My journey to EQUATOR: There are no degrees of randomness. EQUATOR Network. 2016 https://www.equator-network.org/2016/02/16/anniversary-blog-series-1/ Accessed 17 Jun 2019.

O’Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014;89:1245–51.

Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19:349–57.

Morse JM. Editorial: Qualitative generalizability. Qual Health Res. 1999;9:5–6.

Leung L. Validity, reliability, and generalizability in qualitative research. J Family Med Prim Care. 2015;4:324–7.

Spigt M, Arts ICW. How to review a manuscript. J Clin Epidemiol. 2010;63:1385–90.

Griffiths P, Norman I. Qualitative or quantitative? Developing and evaluating complex interventions: time to end the paradigm war. Int J Nurs Stud. 2013;50:583–4.

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Acknowledgments

The support of Daniel Rütter in compiling data and providing technical support is gratefully acknowledged. Furthermore, we would like to thank Holger Hönings for applying general-purpose programming language to allow for a quantification of reviewer comments in the MS Excel spreadsheet.

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Oliver Rudolf HERBER

School of Nursing, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK

Caroline BRADBURY-JONES & Julie TAYLOR

Institute of Health and Care Sciences, Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden

Susanna BÖLING

Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, King’s College London, London, UK

Sarah COMBES

Institute of Applied Nursing Sciences, Department of Health, University of Applied Sciences FHS St.Gallen, St. Gallen, Switzerland

Julian HIRT

Cardiology department, Radboud University Medical Centre, Nijmegen, the Netherlands

Yvonne KOOP

Division of Emergencies and Critical Care, Oslo University Hospital/Institute of Health and Society, Faculty of Medicine, University of Oslo, Oslo, Norway

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Hogeschool Utrecht, Utrecht, the Netherlands

Jessica D. VELDHUIZEN

Birmingham Women’s and Children’s Hospitals NHS Foundation Trust, Birmingham, UK

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All authors have made an intellectual contribution to this research paper. ORH conducted the qualitative analysis and wrote the first draft of the paper. SB, SC, JH, YK, RN and JDV extracted and classified each comment using the classification system. CB-J and JT independently undertook a calibration exercise of a random sub-sample of articles ( n  = 22) to ensure consistency across coders. All co-authors (CB-J, SB, SC, JH, YK, RN, JDV and JT) have input into drafts and have read and approved the final version of the manuscript.

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Additional file 1.

References of all manuscripts included in the analysis ( n  = 107).

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HERBER, O.R., BRADBURY-JONES, C., BÖLING, S. et al. What feedback do reviewers give when reviewing qualitative manuscripts? A focused mapping review and synthesis. BMC Med Res Methodol 20 , 122 (2020). https://doi.org/10.1186/s12874-020-01005-y

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• What Is Peer Review? | Types & Examples

What Is Peer Review? | Types & Examples

Published on December 17, 2021 by Tegan George . Revised on June 22, 2023.

Peer review, sometimes referred to as refereeing , is the process of evaluating submissions to an academic journal. Using strict criteria, a panel of reviewers in the same subject area decides whether to accept each submission for publication.

Peer-reviewed articles are considered a highly credible source due to the stringent process they go through before publication.

There are various types of peer review. The main difference between them is to what extent the authors, reviewers, and editors know each other’s identities. The most common types are:

• Single-blind review
• Double-blind review
• Triple-blind review

Collaborative review

Open review.

Relatedly, peer assessment is a process where your peers provide you with feedback on something you’ve written, based on a set of criteria or benchmarks from an instructor. They then give constructive feedback, compliments, or guidance to help you improve your draft.

Table of contents

What is the purpose of peer review, types of peer review, the peer review process, providing feedback to your peers, peer review example, advantages of peer review, criticisms of peer review, other interesting articles, frequently asked questions about peer reviews.

Many academic fields use peer review, largely to determine whether a manuscript is suitable for publication. Peer review enhances the credibility of the manuscript. For this reason, academic journals are among the most credible sources you can refer to.

However, peer review is also common in non-academic settings. The United Nations, the European Union, and many individual nations use peer review to evaluate grant applications. It is also widely used in medical and health-related fields as a teaching or quality-of-care measure.

Peer assessment is often used in the classroom as a pedagogical tool. Both receiving feedback and providing it are thought to enhance the learning process, helping students think critically and collaboratively.

Prevent plagiarism. Run a free check.

Depending on the journal, there are several types of peer review.

Single-blind peer review

The most common type of peer review is single-blind (or single anonymized) review . Here, the names of the reviewers are not known by the author.

While this gives the reviewers the ability to give feedback without the possibility of interference from the author, there has been substantial criticism of this method in the last few years. Many argue that single-blind reviewing can lead to poaching or intellectual theft or that anonymized comments cause reviewers to be too harsh.

Double-blind peer review

In double-blind (or double anonymized) review , both the author and the reviewers are anonymous.

Arguments for double-blind review highlight that this mitigates any risk of prejudice on the side of the reviewer, while protecting the nature of the process. In theory, it also leads to manuscripts being published on merit rather than on the reputation of the author.

Triple-blind peer review

While triple-blind (or triple anonymized) review —where the identities of the author, reviewers, and editors are all anonymized—does exist, it is difficult to carry out in practice.

Proponents of adopting triple-blind review for journal submissions argue that it minimizes potential conflicts of interest and biases. However, ensuring anonymity is logistically challenging, and current editing software is not always able to fully anonymize everyone involved in the process.

In collaborative review , authors and reviewers interact with each other directly throughout the process. However, the identity of the reviewer is not known to the author. This gives all parties the opportunity to resolve any inconsistencies or contradictions in real time, and provides them a rich forum for discussion. It can mitigate the need for multiple rounds of editing and minimize back-and-forth.

Collaborative review can be time- and resource-intensive for the journal, however. For these collaborations to occur, there has to be a set system in place, often a technological platform, with staff monitoring and fixing any bugs or glitches.

Lastly, in open review , all parties know each other’s identities throughout the process. Often, open review can also include feedback from a larger audience, such as an online forum, or reviewer feedback included as part of the final published product.

While many argue that greater transparency prevents plagiarism or unnecessary harshness, there is also concern about the quality of future scholarship if reviewers feel they have to censor their comments.

In general, the peer review process includes the following steps:

• First, the author submits the manuscript to the editor.
• Reject the manuscript and send it back to the author, or
• Send it onward to the selected peer reviewer(s)
• Next, the peer review process occurs. The reviewer provides feedback, addressing any major or minor issues with the manuscript, and gives their advice regarding what edits should be made.
• Lastly, the edited manuscript is sent back to the author. They input the edits and resubmit it to the editor for publication.

In an effort to be transparent, many journals are now disclosing who reviewed each article in the published product. There are also increasing opportunities for collaboration and feedback, with some journals allowing open communication between reviewers and authors.

It can seem daunting at first to conduct a peer review or peer assessment. If you’re not sure where to start, there are several best practices you can use.

Summarize the argument in your own words

Summarizing the main argument helps the author see how their argument is interpreted by readers, and gives you a jumping-off point for providing feedback. If you’re having trouble doing this, it’s a sign that the argument needs to be clearer, more concise, or worded differently.

If the author sees that you’ve interpreted their argument differently than they intended, they have an opportunity to address any misunderstandings when they get the manuscript back.

Separate your feedback into major and minor issues

It can be challenging to keep feedback organized. One strategy is to start out with any major issues and then flow into the more minor points. It’s often helpful to keep your feedback in a numbered list, so the author has concrete points to refer back to.

Major issues typically consist of any problems with the style, flow, or key points of the manuscript. Minor issues include spelling errors, citation errors, or other smaller, easy-to-apply feedback.

Tip: Try not to focus too much on the minor issues. If the manuscript has a lot of typos, consider making a note that the author should address spelling and grammar issues, rather than going through and fixing each one.

The best feedback you can provide is anything that helps them strengthen their argument or resolve major stylistic issues.

Give the type of feedback that you would like to receive

No one likes being criticized, and it can be difficult to give honest feedback without sounding overly harsh or critical. One strategy you can use here is the “compliment sandwich,” where you “sandwich” your constructive criticism between two compliments.

Be sure you are giving concrete, actionable feedback that will help the author submit a successful final draft. While you shouldn’t tell them exactly what they should do, your feedback should help them resolve any issues they may have overlooked.

As a rule of thumb, your feedback should be:

• Easy to understand
• Constructive

Receive feedback on language, structure, and formatting

Professional editors proofread and edit your paper by focusing on:

• Academic style
• Vague sentences
• Style consistency

See an example

Below is a brief annotated research example. You can view examples of peer feedback by hovering over the highlighted sections.

Influence of phone use on sleep

Studies show that teens from the US are getting less sleep than they were a decade ago (Johnson, 2019) . On average, teens only slept for 6 hours a night in 2021, compared to 8 hours a night in 2011. Johnson mentions several potential causes, such as increased anxiety, changed diets, and increased phone use.

The current study focuses on the effect phone use before bedtime has on the number of hours of sleep teens are getting.

For this study, a sample of 300 teens was recruited using social media, such as Facebook, Instagram, and Snapchat. The first week, all teens were allowed to use their phone the way they normally would, in order to obtain a baseline.

The sample was then divided into 3 groups:

• Group 1 was not allowed to use their phone before bedtime.
• Group 2 used their phone for 1 hour before bedtime.
• Group 3 used their phone for 3 hours before bedtime.

All participants were asked to go to sleep around 10 p.m. to control for variation in bedtime . In the morning, their Fitbit showed the number of hours they’d slept. They kept track of these numbers themselves for 1 week.

Two independent t tests were used in order to compare Group 1 and Group 2, and Group 1 and Group 3. The first t test showed no significant difference ( p > .05) between the number of hours for Group 1 ( M = 7.8, SD = 0.6) and Group 2 ( M = 7.0, SD = 0.8). The second t test showed a significant difference ( p < .01) between the average difference for Group 1 ( M = 7.8, SD = 0.6) and Group 3 ( M = 6.1, SD = 1.5).

This shows that teens sleep fewer hours a night if they use their phone for over an hour before bedtime, compared to teens who use their phone for 0 to 1 hours.

Peer review is an established and hallowed process in academia, dating back hundreds of years. It provides various fields of study with metrics, expectations, and guidance to ensure published work is consistent with predetermined standards.

• Protects the quality of published research

Peer review can stop obviously problematic, falsified, or otherwise untrustworthy research from being published. Any content that raises red flags for reviewers can be closely examined in the review stage, preventing plagiarized or duplicated research from being published.

• Gives you access to feedback from experts in your field

Peer review represents an excellent opportunity to get feedback from renowned experts in your field and to improve your writing through their feedback and guidance. Experts with knowledge about your subject matter can give you feedback on both style and content, and they may also suggest avenues for further research that you hadn’t yet considered.

• Helps you identify any weaknesses in your argument

Peer review acts as a first defense, helping you ensure your argument is clear and that there are no gaps, vague terms, or unanswered questions for readers who weren’t involved in the research process. This way, you’ll end up with a more robust, more cohesive article.

While peer review is a widely accepted metric for credibility, it’s not without its drawbacks.

• Reviewer bias

The more transparent double-blind system is not yet very common, which can lead to bias in reviewing. A common criticism is that an excellent paper by a new researcher may be declined, while an objectively lower-quality submission by an established researcher would be accepted.

• Delays in publication

The thoroughness of the peer review process can lead to significant delays in publishing time. Research that was current at the time of submission may not be as current by the time it’s published. There is also high risk of publication bias , where journals are more likely to publish studies with positive findings than studies with negative findings.

• Risk of human error

By its very nature, peer review carries a risk of human error. In particular, falsification often cannot be detected, given that reviewers would have to replicate entire experiments to ensure the validity of results.

If you want to know more about statistics , methodology , or research bias , make sure to check out some of our other articles with explanations and examples.

• Normal distribution
• Measures of central tendency
• Chi square tests
• Confidence interval
• Quartiles & Quantiles
• Cluster sampling
• Stratified sampling
• Thematic analysis
• Discourse analysis
• Cohort study
• Ethnography

Research bias

• Implicit bias
• Cognitive bias
• Conformity bias
• Hawthorne effect
• Availability heuristic
• Attrition bias
• Social desirability bias

Peer review is a process of evaluating submissions to an academic journal. Utilizing rigorous criteria, a panel of reviewers in the same subject area decide whether to accept each submission for publication. For this reason, academic journals are often considered among the most credible sources you can use in a research project– provided that the journal itself is trustworthy and well-regarded.

In general, the peer review process follows the following steps: 

• Reject the manuscript and send it back to author, or 
• Send it onward to the selected peer reviewer(s) 
• Next, the peer review process occurs. The reviewer provides feedback, addressing any major or minor issues with the manuscript, and gives their advice regarding what edits should be made. 
• Lastly, the edited manuscript is sent back to the author. They input the edits, and resubmit it to the editor for publication.

Peer review can stop obviously problematic, falsified, or otherwise untrustworthy research from being published. It also represents an excellent opportunity to get feedback from renowned experts in your field. It acts as a first defense, helping you ensure your argument is clear and that there are no gaps, vague terms, or unanswered questions for readers who weren’t involved in the research process.

Peer-reviewed articles are considered a highly credible source due to this stringent process they go through before publication.

Many academic fields use peer review , largely to determine whether a manuscript is suitable for publication. Peer review enhances the credibility of the published manuscript.

However, peer review is also common in non-academic settings. The United Nations, the European Union, and many individual nations use peer review to evaluate grant applications. It is also widely used in medical and health-related fields as a teaching or quality-of-care measure. 

A credible source should pass the CRAAP test  and follow these guidelines:

• The information should be up to date and current.
• The author and publication should be a trusted authority on the subject you are researching.
• The sources the author cited should be easy to find, clear, and unbiased.
• For a web source, the URL and layout should signify that it is trustworthy.

Cite this Scribbr article

If you want to cite this source, you can copy and paste the citation or click the “Cite this Scribbr article” button to automatically add the citation to our free Citation Generator.

George, T. (2023, June 22). What Is Peer Review? | Types & Examples. Scribbr. Retrieved April 9, 2024, from https://www.scribbr.com/methodology/peer-review/

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About Journal

American Journal of Qualitative Research (AJQR)  is a quarterly peer-reviewed academic journal that publishes qualitative research articles from a number of social science disciplines such as psychology, health science, sociology, criminology, education, political science, and administrative studies. The journal is an international and interdisciplinary focus and greatly welcomes papers from all countries. The journal offers an intellectual platform for researchers, practitioners, administrators, and policymakers to contribute and promote qualitative research and analysis.

ISSN: 2576-2141

Call for Papers- American Journal of Qualitative Research

American Journal of Qualitative Research (AJQR) welcomes original research articles and book reviews for its next issue. The AJQR is a quarterly and peer-reviewed journal published in February, May, August, and November.

We are seeking submissions for a forthcoming issue published in February 2024. The paper should be written in professional English. The length of 6000-10000 words is preferred. All manuscripts should be prepared in MS Word format and submitted online: https://www.editorialpark.com/ajqr

For any further information about the journal, please visit its website: https://www.ajqr.org

Submission Deadline: November 15, 2023

Announcement 

Dear AJQR Readers, 

Due to the high volume of submissions in the American Journal of Qualitative Research , the editorial board decided to publish quarterly since 2023.

Volume 8, Issue 1

Current issue.

Social distancing requirements resulted in many people working from home in the United Kingdom during the COVID-19 pandemic. The topic of working from home was often discussed in the media and online during the pandemic, but little was known about how quality of life (QOL) and remote working interfaced. The purpose of this study was to describe QOL while working from home during the COVID-19 pandemic. The novel topic, unique methodological approach of the General Online Qualitative Study ( D’Abundo & Franco, 2022a), and the strategic Social Distancing Sampling ( D’Abundo & Franco, 2022c) resulted in significant participation throughout the world (n = 709). The United Kingdom subset of participants (n = 234) is the focus of this article. This big qual, large qualitative study (n >100) included the principal investigator-developed, open-ended, online questionnaire entitled the “Quality of Life Home Workplace Questionnaire (QOLHWQ)” and demographic questions. Data were collected peak-pandemic from July to September 2020. Most participants cited increased QOL due to having more time with family/kids/partners/pets, a more comfortable work environment while being at home, and less commuting to work. The most cited issue associated with negative QOL was social isolation. As restrictions have been lifted and public health emergency declarations have been terminated during the post-peak era of the COVID-19 pandemic, the potential for future public health emergencies requiring social distancing still exists. To promote QOL and work-life balance for employees working remotely in the United Kingdom, stakeholders could develop social support networks and create effective planning initiatives to prevent social isolation and maximize the benefits of remote working experiences for both employees and organizations.

Keywords: qualitative research, quality of life, remote work, telework, United Kingdom, work from home.

(no abstract)

This essay reviews classic works on the philosophy of science and contemporary pedagogical guides to scientific inquiry in order to present a discussion of the three logics that underlie qualitative research in political science. The first logic, epistemology, relates to the essence of research as a scientific endeavor and is framed as a debate between positivist and interpretivist orientations within the discipline of political science. The second logic, ontology, relates to the approach that research takes to investigating the empirical world and is framed as a debate between positivist qualitative and quantitative orientations, which together constitute the vast majority of mainstream researchers within the discipline. The third logic, methodology, relates to the means by which research aspires to reach its scientific ends and is framed as a debate among positivist qualitative orientations. Additionally, the essay discusses the present state of qualitative research in the discipline of political science, reviews the various ways in which qualitative research is defined in the relevant literature, addresses the limitations and trade-offs that are inherently associated with the aforementioned logics of qualitative research, explores multimethod approaches to remedying these issues, and proposes avenues for acquiring further information on the topics discussed.

Keywords: qualitative research, epistemology, ontology, methodology

This paper examines the phenomenology of diagnostic crossover in eating disorders, the movement within or between feeding and eating disorder subtypes or diagnoses over time, in two young women who experienced multiple changes in eating disorder diagnosis over 5 years. Using interpretative phenomenological analysis, this study found that transitioning between different diagnostic labels, specifically between bulimia nervosa and anorexia nervosa binge/purge subtype, was experienced as disempowering, stigmatizing, and unhelpful. The findings in this study offer novel evidence that, from the perspective of individuals diagnosed with EDs, using BMI as an indicator of the presence, severity, or change of an ED may have adverse consequences for well-being and recovery and may lead to mischaracterization or misclassification of health status. The narratives discussed in this paper highlight the need for more person-centered practices in the context of diagnostic crossover. Including the perspectives of those with lived experience can help care providers working with individuals with eating disorders gain an in-depth understanding of the potential personal impact of diagnosis changing and inform discussions around developing person-focused diagnostic practices.

Keywords: feeding and eating disorders, bulimia nervosa, diagnostic labels, diagnostic crossover, illness narrative

Often among the first witnesses to child trauma, educators and therapists are on the frontline of an unfolding and multi-pronged occupational crisis. For educators, lack of support and secondary traumatic stress (STS) appear to be contributing to an epidemic in professional attrition. Similarly, therapists who do not prioritize self-care can feel depleted of energy and optimism. The purpose of this phenomenological study was to examine how bearing witness to the traumatic narratives of children impacts similar helping professionals. The study also sought to extrapolate the similarities and differences between compassion fatigue and secondary trauma across these two disciplines. Exploring the common factors and subjective individual experiences related to occupational stress across these two fields may foster a more complete picture of the delicate nature of working with traumatized children and the importance of successful self-care strategies. Utilizing Constructivist Self-Development Theory (CSDT) and focus group interviews, the study explores the significant risk of STS facing both educators and therapists.

Keywords: qualitative, secondary traumatic stress, self-care, child trauma, educators, therapists.

This study explored the lived experiences of residents of the Gulf Coast in the USA during Hurricane Katrina, which made landfall in August 2005 and caused insurmountable destruction throughout the area. A heuristic process and thematic analysis were employed to draw observations and conclusions about the lived experiences of each participant and make meaning through similar thoughts, feelings, and themes that emerged in the analysis of the data. Six themes emerged: (1) fear, (2) loss, (3) anger, (4) support, (5) spirituality, and (6) resilience. The results of this study allude to the possible psychological outcomes as a result of experiencing a traumatic event and provide an outline of what the psychological experience of trauma might entail. The current research suggests that preparedness and expectation are key to resilience and that people who feel that they have power over their situation fare better than those who do not.

Keywords: mass trauma, resilience, loss, natural disaster, mental health.

Women from rural, low-income backgrounds holding positions within the academy are the exception and not the rule. Most women faculty in the academy are from urban/suburban areas and middle- and upper-income family backgrounds. As women faculty who do not represent this norm, our primary goal with this article is to focus on the unique barriers we experienced as girls from rural, low-income areas in K-12 schools that influenced the possibilities for successfully transitioning to and engaging with higher education. We employed a qualitative duoethnographic and narrative research design to respond to the research questions, and we generated our data through semi-structured, critical, ethnographic dialogic conversations. Our duoethnographic-narrative analyses revealed six major themes: (1) independence and other   benefits of having a working-class mom; (2) crashing into middle-class norms and expectations; (3) lucking and falling into college; (4) fish out of water; (5) overcompensating, playing middle class, walking on eggshells, and pushing back; and (6) transitioning from a working-class kid to a working class academic, which we discuss in relation to our own educational attainment.

Keywords: rurality, working-class, educational attainment, duoethnography, higher education, women.

This article draws on the findings of a qualitative study that focused on the perspectives of four Indian American mothers of youth with developmental disabilities on the process of transitioning from school to post-school environments. Data were collected through in-depth ethnographic interviews. The findings indicate that in their efforts to support their youth with developmental disabilities, the mothers themselves navigate multiple transitions across countries, constructs, dreams, systems of schooling, and services. The mothers’ perspectives have to be understood against the larger context of their experiences as citizens of this country as well as members of the South Asian diaspora. The mothers’ views on services, their journey, their dreams for their youth, and their interpretation of the ideas anchored in current conversations on transition are continually evolving. Their attempts to maintain their resilience and their indigenous understandings while simultaneously negotiating their experiences in the United States with supporting their youth are discussed.  

Keywords: Indian-American mothers, transitioning, diaspora, disability, dreams.

This study explored the influence of yoga on practitioners’ lives ‘off the mat’ through a phenomenological lens. Central to the study was the lived experience of yoga in a purposive sample of self-identified New Zealand practitioners (n=38; 89.5% female; aged 18 to 65 years; 60.5% aged 36 to 55 years). The study’s aim was to explore whether habitual yoga practitioners experience any pro-health downstream effects of their practice ‘off the mat’ via their lived experience of yoga. A qualitative mixed methodology was applied via a phenomenological lens that explicitly acknowledged the researcher’s own experience of the research topic. Qualitative methods comprised an open-ended online survey for all participants (n=38), followed by in-depth semi-structured interviews (n=8) on a randomized subset. Quantitative methods included online outcome measures (health habits, self-efficacy, interoceptive awareness, and physical activity), practice component data (tenure, dose, yoga styles, yoga teacher status, meditation frequency), and socio-demographics. This paper highlights the qualitative findings emerging from participant narratives. Reported benefits of practice included the provision of a filter through which to engage with life and the experience of self-regulation and mindfulness ‘off the mat’. Practitioners experienced yoga as a self-sustaining positive resource via self-regulation guided by an embodied awareness. The key narrative to emerge was an attunement to embodiment through movement. Embodied movement can elicit self-regulatory pathways that support health behavior.

Keywords: embodiment, habit, interoception, mindfulness, movement practice, qualitative, self-regulation, yoga.

Historically and in the present day, Black women’s positionality in the U.S. has paradoxically situated them in a society where they are both intrinsically essential and treated as expendable. This positionality, known as gendered racism, manifests commonly in professional environments and results in myriad harms. In response, Black women have developed, honed, and practiced a range of coping styles to mitigate the insidious effects of gendered racism. While often effective in the short-term, these techniques frequently complicate Black women’s well-being. For Black female clinicians who experience gendered racism and work on the frontlines of community mental health, myriad bio-psycho-social-spiritual harms compound. This project provided an opportunity for Black female clinicians from across the U.S. to share their experiences during the dual pandemics of COVID-19 and anti-Black violence. I conducted in-depth interviews with clinicians (n=14) between the ages of 30 and 58. Using the Listening Guide voice-centered approach to data generation and analysis, I identified four voices to help answer this project’s central question: How do you experience being a Black female clinician in the U.S.? The voices of self, pride, vigilance, and mediating narrated the complex ways participants experienced their workplaces. This complexity seemed to be context-specific, depending on whether the clinicians worked in predominantly White workplaces (PWW), a mix of PWW and private practice, or private practice exclusively. Participants who worked only in PWW experienced the greatest stress, oppression, and burnout risk, while participants who worked exclusively in private practice reported more joy, more authenticity, and more job satisfaction. These findings have implications for mentoring, supporting, and retaining Black female clinicians.

Keywords: Black female clinicians, professional experiences, gendered racism, Listening Guide voice-centered approach.

The purpose of this article is to speak directly to the paucity of research regarding Dominican American women and identity narratives. To do so, this article uses the Listening Guide Method of Qualitative Inquiry (Gilligan, et al., 2006) to explore how 1.5 and second-generation Dominican American women narrated their experiences of individual identity within American cultural contexts and constructs. The results draw from the emergence of themes across six participant interviews and showed two distinct voices: The Voice of Cultural Explanation and the Tides of Dominican American Female Identity. Narrative examples from five participants are offered to illustrate where 1.5 and second-generation Dominican American women negotiate their identity narratives at the intersection of their Dominican and American selves. The article offers two conclusions. One, that participant women use the Voice of Cultural Explanation in order to discuss their identity as reflected within the broad cultural tensions of their daily lives. Two, that the Tides of Dominican American Female Identity are used to express strong emotions that manifest within their personal narratives as the unwanted distance from either the Dominican or American parts of their person.

Keywords: Dominican American, women, identity, the Listening Guide, narratives

Beyond the pages of academic medicine

10 Tips for Reviewing a Qualitative Paper

Editor’s Note: The following post is part of a series of Peer Reviewer Resources written by some of  Academic Medicine ‘s top peer reviewers. Read other peer review posts .

By: Carol-anne Moulton, MD, FRACS, MEd, PhD, Department of Surgery, University of Toronto, and Priyanka Patel, MSc, Wilson Center, University Health Network, University of Toronto

This is a tough task. Let us say that off the bat. We have been involved in qualitative research for a long time now and the complexity of it never ceases to amaze us…so there is no “how to” guide that will suit all qualitative research.

Having said that, we think there are some guiding principles that can help us begin to understand the rigor of qualitative research and consequently the review process.

• Question/Purpose : This should be clearly stated, as in all research studies. There are generally no hypotheses statements in qualitative research as we are not testing but rather exploring. Ideally, the questions are framed around how and why type questions, rather than how often, is there a difference, or what are the factors type questions.
• Rationale of study : We like to make sure that the study was built upon a well justified and referenced rationale. It may not be our area of study but we think it is important for the authors to provide rationale for their study by building up the arguments from the literature. Theories or pre-existing frameworks that informed the research question should be described up front. Some work claims to be atheoretical. Traditionally, grounded theorists claimed their work to be atheoretical, but nowadays many grounded theorists are acknowledging being informed by particular perspectives, frameworks, or theories. This should be made explicit.
• Methodology described : What type of research was this? Ethnography? Grounded theory? Phenomenology? Discourse analysis? It’s important that the researchers describe their research journey in a clear and detailed enough way to give the readers an understanding for how the analyses evolved. This should include an explanation of why the methodological approach was used, as well as the key principles from the methodology that guided the study.
• Epistemology : Researchers come from all paradigms and it is important to identify within which paradigm the authors are situated. Sometimes they might state deliberately “We have used constructivist grounded theory,” but it might be a matter of reading between the lines to figure it out. If from the positivist paradigm, authors might use the terms valid or verified to imply they are making statements of truth. The paradigm helps us understand what the authors mean by “truth” and informs how they went about creating knowledge and constructing meaning from their results.
• Context described satisfactorily : Qualitative research is not meant to imply generalizability. In fact, we celebrate the importance of context. We recognize that the phenomena we study are often different in meaningful ways when taken to a different context. For example, the experiences of physicians coping with burnout may be unique based on specialty and/or institution (i.e. type of systems-level support available, differing demands in academic or community institutions). A good qualitative study should therefore describe sufficient details of context (i.e. physical, cultural, social, and/or environmental context) in which the research was conducted to allow the reader to make judgments of whether the results might be transferable to another (possibly their own) setting.
• Data collection and analysis : Do they provide enough information to understand the collection and analysis process? As reviewers, we often ask ourselves whether the data collection and analyses are clear and detailed enough for us to gain a sense of how the analysis of the phenomena evolved. For example, who made up the research team? Because most knowledge is viewed as a co-construction between researcher and participants, each individual (e.g. a sociologist versus a surgeon) will analyze the results differently, but both meaningfully, based on their unique position and perspective.
• Sampling strategies : These are very important to understand whether the question was aligned with the data collection process. The sample reflects the type of results achieved and helps the reader understand from which perspective the data was collected. Some common sampling strategies include theoretical sampling and negative case sampling. Researchers may theoretically sample by selecting participants that in someway inform their understanding of an emergent theme or idea. Negative case sampling may be used to search for instances that may challenge the emergent patterns from the data for the purpose of refining the analysis. Negative case sampling is used to ensure that the researchers are not specifically selecting cases that confirm their findings.
• Analysis elevated beyond description : Results might be descriptive in nature (e.g. “One surgeon felt upset and isolated after he experienced a hernia complication in his first month of independent practice”) or they might be elevated to create more abstract concepts and ideas removed from the primary dataset (e.g. characterizing the phases of surgeons’ reactions to complications). In either case, the researcher should ensure that the way they present their findings are aligned with principles of the methodology used.
• Proof of an iterative process : Qualitative research is usually done in an iterative manner where ideas and concepts are built up over time and occur through cycles of data collection and data analysis. This is demonstrated through statements like “Our interview template was altered over time to reflect the emergent ideas through the analysis process,” or “As we became interested in this concept, we began to sample for…”.
• Reflexivity : This is tough to understand, especially for those of us who come from the positivist paradigm where it is of utmost importance to “prove” that the results are “true” and untainted by bias. The aim of qualitative research is to understand meaning rather than assuming that there is a singular truth or reality. A good qualitative researcher recognizes that the way they make sense of and attach meaning to the data is partly shaped by the characteristics of the researcher (i.e. age, gender, social class, ethnicity, professional status, etc.) and the assumptions they hold. The researcher should make explicit the perspectives they are coming from so that the readers can interpret the data appropriately. Consider a study exploring the pressures surgical trainees experience in residency conducted by a staff surgeon versus a non-surgical anthropologist. You can imagine the findings may differ based on the types of questions the two interviewers decide to ask, what they each find interesting or important, or how comfortable the resident feels discussing sensitive information with an outsider (anthropologist) as opposed to an insider (surgeon). We like to see that a researcher has reflected on how her or his unique position, preconceptions, and biases influenced the findings.

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A Practical Guide to Writing Quantitative and Qualitative Research Questions and Hypotheses in Scholarly Articles

Edward barroga.

1 Department of General Education, Graduate School of Nursing Science, St. Luke’s International University, Tokyo, Japan.

Glafera Janet Matanguihan

2 Department of Biological Sciences, Messiah University, Mechanicsburg, PA, USA.

The development of research questions and the subsequent hypotheses are prerequisites to defining the main research purpose and specific objectives of a study. Consequently, these objectives determine the study design and research outcome. The development of research questions is a process based on knowledge of current trends, cutting-edge studies, and technological advances in the research field. Excellent research questions are focused and require a comprehensive literature search and in-depth understanding of the problem being investigated. Initially, research questions may be written as descriptive questions which could be developed into inferential questions. These questions must be specific and concise to provide a clear foundation for developing hypotheses. Hypotheses are more formal predictions about the research outcomes. These specify the possible results that may or may not be expected regarding the relationship between groups. Thus, research questions and hypotheses clarify the main purpose and specific objectives of the study, which in turn dictate the design of the study, its direction, and outcome. Studies developed from good research questions and hypotheses will have trustworthy outcomes with wide-ranging social and health implications.

INTRODUCTION

Scientific research is usually initiated by posing evidenced-based research questions which are then explicitly restated as hypotheses. 1 , 2 The hypotheses provide directions to guide the study, solutions, explanations, and expected results. 3 , 4 Both research questions and hypotheses are essentially formulated based on conventional theories and real-world processes, which allow the inception of novel studies and the ethical testing of ideas. 5 , 6

It is crucial to have knowledge of both quantitative and qualitative research 2 as both types of research involve writing research questions and hypotheses. 7 However, these crucial elements of research are sometimes overlooked; if not overlooked, then framed without the forethought and meticulous attention it needs. Planning and careful consideration are needed when developing quantitative or qualitative research, particularly when conceptualizing research questions and hypotheses. 4

There is a continuing need to support researchers in the creation of innovative research questions and hypotheses, as well as for journal articles that carefully review these elements. 1 When research questions and hypotheses are not carefully thought of, unethical studies and poor outcomes usually ensue. Carefully formulated research questions and hypotheses define well-founded objectives, which in turn determine the appropriate design, course, and outcome of the study. This article then aims to discuss in detail the various aspects of crafting research questions and hypotheses, with the goal of guiding researchers as they develop their own. Examples from the authors and peer-reviewed scientific articles in the healthcare field are provided to illustrate key points.

DEFINITIONS AND RELATIONSHIP OF RESEARCH QUESTIONS AND HYPOTHESES

A research question is what a study aims to answer after data analysis and interpretation. The answer is written in length in the discussion section of the paper. Thus, the research question gives a preview of the different parts and variables of the study meant to address the problem posed in the research question. 1 An excellent research question clarifies the research writing while facilitating understanding of the research topic, objective, scope, and limitations of the study. 5

On the other hand, a research hypothesis is an educated statement of an expected outcome. This statement is based on background research and current knowledge. 8 , 9 The research hypothesis makes a specific prediction about a new phenomenon 10 or a formal statement on the expected relationship between an independent variable and a dependent variable. 3 , 11 It provides a tentative answer to the research question to be tested or explored. 4

Hypotheses employ reasoning to predict a theory-based outcome. 10 These can also be developed from theories by focusing on components of theories that have not yet been observed. 10 The validity of hypotheses is often based on the testability of the prediction made in a reproducible experiment. 8

Conversely, hypotheses can also be rephrased as research questions. Several hypotheses based on existing theories and knowledge may be needed to answer a research question. Developing ethical research questions and hypotheses creates a research design that has logical relationships among variables. These relationships serve as a solid foundation for the conduct of the study. 4 , 11 Haphazardly constructed research questions can result in poorly formulated hypotheses and improper study designs, leading to unreliable results. Thus, the formulations of relevant research questions and verifiable hypotheses are crucial when beginning research. 12

CHARACTERISTICS OF GOOD RESEARCH QUESTIONS AND HYPOTHESES

Excellent research questions are specific and focused. These integrate collective data and observations to confirm or refute the subsequent hypotheses. Well-constructed hypotheses are based on previous reports and verify the research context. These are realistic, in-depth, sufficiently complex, and reproducible. More importantly, these hypotheses can be addressed and tested. 13

There are several characteristics of well-developed hypotheses. Good hypotheses are 1) empirically testable 7 , 10 , 11 , 13 ; 2) backed by preliminary evidence 9 ; 3) testable by ethical research 7 , 9 ; 4) based on original ideas 9 ; 5) have evidenced-based logical reasoning 10 ; and 6) can be predicted. 11 Good hypotheses can infer ethical and positive implications, indicating the presence of a relationship or effect relevant to the research theme. 7 , 11 These are initially developed from a general theory and branch into specific hypotheses by deductive reasoning. In the absence of a theory to base the hypotheses, inductive reasoning based on specific observations or findings form more general hypotheses. 10

TYPES OF RESEARCH QUESTIONS AND HYPOTHESES

Research questions and hypotheses are developed according to the type of research, which can be broadly classified into quantitative and qualitative research. We provide a summary of the types of research questions and hypotheses under quantitative and qualitative research categories in Table 1 .

Research questions in quantitative research

In quantitative research, research questions inquire about the relationships among variables being investigated and are usually framed at the start of the study. These are precise and typically linked to the subject population, dependent and independent variables, and research design. 1 Research questions may also attempt to describe the behavior of a population in relation to one or more variables, or describe the characteristics of variables to be measured ( descriptive research questions ). 1 , 5 , 14 These questions may also aim to discover differences between groups within the context of an outcome variable ( comparative research questions ), 1 , 5 , 14 or elucidate trends and interactions among variables ( relationship research questions ). 1 , 5 We provide examples of descriptive, comparative, and relationship research questions in quantitative research in Table 2 .

Hypotheses in quantitative research

In quantitative research, hypotheses predict the expected relationships among variables. 15 Relationships among variables that can be predicted include 1) between a single dependent variable and a single independent variable ( simple hypothesis ) or 2) between two or more independent and dependent variables ( complex hypothesis ). 4 , 11 Hypotheses may also specify the expected direction to be followed and imply an intellectual commitment to a particular outcome ( directional hypothesis ) 4 . On the other hand, hypotheses may not predict the exact direction and are used in the absence of a theory, or when findings contradict previous studies ( non-directional hypothesis ). 4 In addition, hypotheses can 1) define interdependency between variables ( associative hypothesis ), 4 2) propose an effect on the dependent variable from manipulation of the independent variable ( causal hypothesis ), 4 3) state a negative relationship between two variables ( null hypothesis ), 4 , 11 , 15 4) replace the working hypothesis if rejected ( alternative hypothesis ), 15 explain the relationship of phenomena to possibly generate a theory ( working hypothesis ), 11 5) involve quantifiable variables that can be tested statistically ( statistical hypothesis ), 11 6) or express a relationship whose interlinks can be verified logically ( logical hypothesis ). 11 We provide examples of simple, complex, directional, non-directional, associative, causal, null, alternative, working, statistical, and logical hypotheses in quantitative research, as well as the definition of quantitative hypothesis-testing research in Table 3 .

Research questions in qualitative research

Unlike research questions in quantitative research, research questions in qualitative research are usually continuously reviewed and reformulated. The central question and associated subquestions are stated more than the hypotheses. 15 The central question broadly explores a complex set of factors surrounding the central phenomenon, aiming to present the varied perspectives of participants. 15

There are varied goals for which qualitative research questions are developed. These questions can function in several ways, such as to 1) identify and describe existing conditions ( contextual research question s); 2) describe a phenomenon ( descriptive research questions ); 3) assess the effectiveness of existing methods, protocols, theories, or procedures ( evaluation research questions ); 4) examine a phenomenon or analyze the reasons or relationships between subjects or phenomena ( explanatory research questions ); or 5) focus on unknown aspects of a particular topic ( exploratory research questions ). 5 In addition, some qualitative research questions provide new ideas for the development of theories and actions ( generative research questions ) or advance specific ideologies of a position ( ideological research questions ). 1 Other qualitative research questions may build on a body of existing literature and become working guidelines ( ethnographic research questions ). Research questions may also be broadly stated without specific reference to the existing literature or a typology of questions ( phenomenological research questions ), may be directed towards generating a theory of some process ( grounded theory questions ), or may address a description of the case and the emerging themes ( qualitative case study questions ). 15 We provide examples of contextual, descriptive, evaluation, explanatory, exploratory, generative, ideological, ethnographic, phenomenological, grounded theory, and qualitative case study research questions in qualitative research in Table 4 , and the definition of qualitative hypothesis-generating research in Table 5 .

Qualitative studies usually pose at least one central research question and several subquestions starting with How or What . These research questions use exploratory verbs such as explore or describe . These also focus on one central phenomenon of interest, and may mention the participants and research site. 15

Hypotheses in qualitative research

Hypotheses in qualitative research are stated in the form of a clear statement concerning the problem to be investigated. Unlike in quantitative research where hypotheses are usually developed to be tested, qualitative research can lead to both hypothesis-testing and hypothesis-generating outcomes. 2 When studies require both quantitative and qualitative research questions, this suggests an integrative process between both research methods wherein a single mixed-methods research question can be developed. 1

FRAMEWORKS FOR DEVELOPING RESEARCH QUESTIONS AND HYPOTHESES

Research questions followed by hypotheses should be developed before the start of the study. 1 , 12 , 14 It is crucial to develop feasible research questions on a topic that is interesting to both the researcher and the scientific community. This can be achieved by a meticulous review of previous and current studies to establish a novel topic. Specific areas are subsequently focused on to generate ethical research questions. The relevance of the research questions is evaluated in terms of clarity of the resulting data, specificity of the methodology, objectivity of the outcome, depth of the research, and impact of the study. 1 , 5 These aspects constitute the FINER criteria (i.e., Feasible, Interesting, Novel, Ethical, and Relevant). 1 Clarity and effectiveness are achieved if research questions meet the FINER criteria. In addition to the FINER criteria, Ratan et al. described focus, complexity, novelty, feasibility, and measurability for evaluating the effectiveness of research questions. 14

The PICOT and PEO frameworks are also used when developing research questions. 1 The following elements are addressed in these frameworks, PICOT: P-population/patients/problem, I-intervention or indicator being studied, C-comparison group, O-outcome of interest, and T-timeframe of the study; PEO: P-population being studied, E-exposure to preexisting conditions, and O-outcome of interest. 1 Research questions are also considered good if these meet the “FINERMAPS” framework: Feasible, Interesting, Novel, Ethical, Relevant, Manageable, Appropriate, Potential value/publishable, and Systematic. 14

As we indicated earlier, research questions and hypotheses that are not carefully formulated result in unethical studies or poor outcomes. To illustrate this, we provide some examples of ambiguous research question and hypotheses that result in unclear and weak research objectives in quantitative research ( Table 6 ) 16 and qualitative research ( Table 7 ) 17 , and how to transform these ambiguous research question(s) and hypothesis(es) into clear and good statements.

a These statements were composed for comparison and illustrative purposes only.

b These statements are direct quotes from Higashihara and Horiuchi. 16

a This statement is a direct quote from Shimoda et al. 17

The other statements were composed for comparison and illustrative purposes only.

CONSTRUCTING RESEARCH QUESTIONS AND HYPOTHESES

To construct effective research questions and hypotheses, it is very important to 1) clarify the background and 2) identify the research problem at the outset of the research, within a specific timeframe. 9 Then, 3) review or conduct preliminary research to collect all available knowledge about the possible research questions by studying theories and previous studies. 18 Afterwards, 4) construct research questions to investigate the research problem. Identify variables to be accessed from the research questions 4 and make operational definitions of constructs from the research problem and questions. Thereafter, 5) construct specific deductive or inductive predictions in the form of hypotheses. 4 Finally, 6) state the study aims . This general flow for constructing effective research questions and hypotheses prior to conducting research is shown in Fig. 1 .

Research questions are used more frequently in qualitative research than objectives or hypotheses. 3 These questions seek to discover, understand, explore or describe experiences by asking “What” or “How.” The questions are open-ended to elicit a description rather than to relate variables or compare groups. The questions are continually reviewed, reformulated, and changed during the qualitative study. 3 Research questions are also used more frequently in survey projects than hypotheses in experiments in quantitative research to compare variables and their relationships.

Hypotheses are constructed based on the variables identified and as an if-then statement, following the template, ‘If a specific action is taken, then a certain outcome is expected.’ At this stage, some ideas regarding expectations from the research to be conducted must be drawn. 18 Then, the variables to be manipulated (independent) and influenced (dependent) are defined. 4 Thereafter, the hypothesis is stated and refined, and reproducible data tailored to the hypothesis are identified, collected, and analyzed. 4 The hypotheses must be testable and specific, 18 and should describe the variables and their relationships, the specific group being studied, and the predicted research outcome. 18 Hypotheses construction involves a testable proposition to be deduced from theory, and independent and dependent variables to be separated and measured separately. 3 Therefore, good hypotheses must be based on good research questions constructed at the start of a study or trial. 12

In summary, research questions are constructed after establishing the background of the study. Hypotheses are then developed based on the research questions. Thus, it is crucial to have excellent research questions to generate superior hypotheses. In turn, these would determine the research objectives and the design of the study, and ultimately, the outcome of the research. 12 Algorithms for building research questions and hypotheses are shown in Fig. 2 for quantitative research and in Fig. 3 for qualitative research.

EXAMPLES OF RESEARCH QUESTIONS FROM PUBLISHED ARTICLES

• EXAMPLE 1. Descriptive research question (quantitative research)
• - Presents research variables to be assessed (distinct phenotypes and subphenotypes)
• “BACKGROUND: Since COVID-19 was identified, its clinical and biological heterogeneity has been recognized. Identifying COVID-19 phenotypes might help guide basic, clinical, and translational research efforts.
• RESEARCH QUESTION: Does the clinical spectrum of patients with COVID-19 contain distinct phenotypes and subphenotypes? ” 19
• EXAMPLE 2. Relationship research question (quantitative research)
• - Shows interactions between dependent variable (static postural control) and independent variable (peripheral visual field loss)
• “Background: Integration of visual, vestibular, and proprioceptive sensations contributes to postural control. People with peripheral visual field loss have serious postural instability. However, the directional specificity of postural stability and sensory reweighting caused by gradual peripheral visual field loss remain unclear.
• Research question: What are the effects of peripheral visual field loss on static postural control ?” 20
• EXAMPLE 3. Comparative research question (quantitative research)
• - Clarifies the difference among groups with an outcome variable (patients enrolled in COMPERA with moderate PH or severe PH in COPD) and another group without the outcome variable (patients with idiopathic pulmonary arterial hypertension (IPAH))
• “BACKGROUND: Pulmonary hypertension (PH) in COPD is a poorly investigated clinical condition.
• RESEARCH QUESTION: Which factors determine the outcome of PH in COPD?
• STUDY DESIGN AND METHODS: We analyzed the characteristics and outcome of patients enrolled in the Comparative, Prospective Registry of Newly Initiated Therapies for Pulmonary Hypertension (COMPERA) with moderate or severe PH in COPD as defined during the 6th PH World Symposium who received medical therapy for PH and compared them with patients with idiopathic pulmonary arterial hypertension (IPAH) .” 21
• EXAMPLE 4. Exploratory research question (qualitative research)
• - Explores areas that have not been fully investigated (perspectives of families and children who receive care in clinic-based child obesity treatment) to have a deeper understanding of the research problem
• “Problem: Interventions for children with obesity lead to only modest improvements in BMI and long-term outcomes, and data are limited on the perspectives of families of children with obesity in clinic-based treatment. This scoping review seeks to answer the question: What is known about the perspectives of families and children who receive care in clinic-based child obesity treatment? This review aims to explore the scope of perspectives reported by families of children with obesity who have received individualized outpatient clinic-based obesity treatment.” 22
• EXAMPLE 5. Relationship research question (quantitative research)
• - Defines interactions between dependent variable (use of ankle strategies) and independent variable (changes in muscle tone)
• “Background: To maintain an upright standing posture against external disturbances, the human body mainly employs two types of postural control strategies: “ankle strategy” and “hip strategy.” While it has been reported that the magnitude of the disturbance alters the use of postural control strategies, it has not been elucidated how the level of muscle tone, one of the crucial parameters of bodily function, determines the use of each strategy. We have previously confirmed using forward dynamics simulations of human musculoskeletal models that an increased muscle tone promotes the use of ankle strategies. The objective of the present study was to experimentally evaluate a hypothesis: an increased muscle tone promotes the use of ankle strategies. Research question: Do changes in the muscle tone affect the use of ankle strategies ?” 23

EXAMPLES OF HYPOTHESES IN PUBLISHED ARTICLES

• EXAMPLE 1. Working hypothesis (quantitative research)
• - A hypothesis that is initially accepted for further research to produce a feasible theory
• “As fever may have benefit in shortening the duration of viral illness, it is plausible to hypothesize that the antipyretic efficacy of ibuprofen may be hindering the benefits of a fever response when taken during the early stages of COVID-19 illness .” 24
• “In conclusion, it is plausible to hypothesize that the antipyretic efficacy of ibuprofen may be hindering the benefits of a fever response . The difference in perceived safety of these agents in COVID-19 illness could be related to the more potent efficacy to reduce fever with ibuprofen compared to acetaminophen. Compelling data on the benefit of fever warrant further research and review to determine when to treat or withhold ibuprofen for early stage fever for COVID-19 and other related viral illnesses .” 24
• EXAMPLE 2. Exploratory hypothesis (qualitative research)
• - Explores particular areas deeper to clarify subjective experience and develop a formal hypothesis potentially testable in a future quantitative approach
• “We hypothesized that when thinking about a past experience of help-seeking, a self distancing prompt would cause increased help-seeking intentions and more favorable help-seeking outcome expectations .” 25
• “Conclusion
• Although a priori hypotheses were not supported, further research is warranted as results indicate the potential for using self-distancing approaches to increasing help-seeking among some people with depressive symptomatology.” 25
• EXAMPLE 3. Hypothesis-generating research to establish a framework for hypothesis testing (qualitative research)
• “We hypothesize that compassionate care is beneficial for patients (better outcomes), healthcare systems and payers (lower costs), and healthcare providers (lower burnout). ” 26
• Compassionomics is the branch of knowledge and scientific study of the effects of compassionate healthcare. Our main hypotheses are that compassionate healthcare is beneficial for (1) patients, by improving clinical outcomes, (2) healthcare systems and payers, by supporting financial sustainability, and (3) HCPs, by lowering burnout and promoting resilience and well-being. The purpose of this paper is to establish a scientific framework for testing the hypotheses above . If these hypotheses are confirmed through rigorous research, compassionomics will belong in the science of evidence-based medicine, with major implications for all healthcare domains.” 26
• EXAMPLE 4. Statistical hypothesis (quantitative research)
• - An assumption is made about the relationship among several population characteristics ( gender differences in sociodemographic and clinical characteristics of adults with ADHD ). Validity is tested by statistical experiment or analysis ( chi-square test, Students t-test, and logistic regression analysis)
• “Our research investigated gender differences in sociodemographic and clinical characteristics of adults with ADHD in a Japanese clinical sample. Due to unique Japanese cultural ideals and expectations of women's behavior that are in opposition to ADHD symptoms, we hypothesized that women with ADHD experience more difficulties and present more dysfunctions than men . We tested the following hypotheses: first, women with ADHD have more comorbidities than men with ADHD; second, women with ADHD experience more social hardships than men, such as having less full-time employment and being more likely to be divorced.” 27
• “Statistical Analysis
• ( text omitted ) Between-gender comparisons were made using the chi-squared test for categorical variables and Students t-test for continuous variables…( text omitted ). A logistic regression analysis was performed for employment status, marital status, and comorbidity to evaluate the independent effects of gender on these dependent variables.” 27

EXAMPLES OF HYPOTHESIS AS WRITTEN IN PUBLISHED ARTICLES IN RELATION TO OTHER PARTS

• EXAMPLE 1. Background, hypotheses, and aims are provided
• “Pregnant women need skilled care during pregnancy and childbirth, but that skilled care is often delayed in some countries …( text omitted ). The focused antenatal care (FANC) model of WHO recommends that nurses provide information or counseling to all pregnant women …( text omitted ). Job aids are visual support materials that provide the right kind of information using graphics and words in a simple and yet effective manner. When nurses are not highly trained or have many work details to attend to, these job aids can serve as a content reminder for the nurses and can be used for educating their patients (Jennings, Yebadokpo, Affo, & Agbogbe, 2010) ( text omitted ). Importantly, additional evidence is needed to confirm how job aids can further improve the quality of ANC counseling by health workers in maternal care …( text omitted )” 28
• “ This has led us to hypothesize that the quality of ANC counseling would be better if supported by job aids. Consequently, a better quality of ANC counseling is expected to produce higher levels of awareness concerning the danger signs of pregnancy and a more favorable impression of the caring behavior of nurses .” 28
• “This study aimed to examine the differences in the responses of pregnant women to a job aid-supported intervention during ANC visit in terms of 1) their understanding of the danger signs of pregnancy and 2) their impression of the caring behaviors of nurses to pregnant women in rural Tanzania.” 28
• EXAMPLE 2. Background, hypotheses, and aims are provided
• “We conducted a two-arm randomized controlled trial (RCT) to evaluate and compare changes in salivary cortisol and oxytocin levels of first-time pregnant women between experimental and control groups. The women in the experimental group touched and held an infant for 30 min (experimental intervention protocol), whereas those in the control group watched a DVD movie of an infant (control intervention protocol). The primary outcome was salivary cortisol level and the secondary outcome was salivary oxytocin level.” 29
• “ We hypothesize that at 30 min after touching and holding an infant, the salivary cortisol level will significantly decrease and the salivary oxytocin level will increase in the experimental group compared with the control group .” 29
• EXAMPLE 3. Background, aim, and hypothesis are provided
• “In countries where the maternal mortality ratio remains high, antenatal education to increase Birth Preparedness and Complication Readiness (BPCR) is considered one of the top priorities [1]. BPCR includes birth plans during the antenatal period, such as the birthplace, birth attendant, transportation, health facility for complications, expenses, and birth materials, as well as family coordination to achieve such birth plans. In Tanzania, although increasing, only about half of all pregnant women attend an antenatal clinic more than four times [4]. Moreover, the information provided during antenatal care (ANC) is insufficient. In the resource-poor settings, antenatal group education is a potential approach because of the limited time for individual counseling at antenatal clinics.” 30
• “This study aimed to evaluate an antenatal group education program among pregnant women and their families with respect to birth-preparedness and maternal and infant outcomes in rural villages of Tanzania.” 30
• “ The study hypothesis was if Tanzanian pregnant women and their families received a family-oriented antenatal group education, they would (1) have a higher level of BPCR, (2) attend antenatal clinic four or more times, (3) give birth in a health facility, (4) have less complications of women at birth, and (5) have less complications and deaths of infants than those who did not receive the education .” 30

Research questions and hypotheses are crucial components to any type of research, whether quantitative or qualitative. These questions should be developed at the very beginning of the study. Excellent research questions lead to superior hypotheses, which, like a compass, set the direction of research, and can often determine the successful conduct of the study. Many research studies have floundered because the development of research questions and subsequent hypotheses was not given the thought and meticulous attention needed. The development of research questions and hypotheses is an iterative process based on extensive knowledge of the literature and insightful grasp of the knowledge gap. Focused, concise, and specific research questions provide a strong foundation for constructing hypotheses which serve as formal predictions about the research outcomes. Research questions and hypotheses are crucial elements of research that should not be overlooked. They should be carefully thought of and constructed when planning research. This avoids unethical studies and poor outcomes by defining well-founded objectives that determine the design, course, and outcome of the study.

Disclosure: The authors have no potential conflicts of interest to disclose.

Author Contributions:

• Conceptualization: Barroga E, Matanguihan GJ.
• Methodology: Barroga E, Matanguihan GJ.
• Writing - original draft: Barroga E, Matanguihan GJ.
• Writing - review & editing: Barroga E, Matanguihan GJ.

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• Published: 12 April 2024

Peer review demystified: part 2

Nature Methods volume  21 ,  page 541 ( 2024 ) Cite this article

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We continue our explanation of the peer review process at Nature Methods .

In last month’s Editorial 1 , we described how we select peer reviewers and utilize their reports in reaching an editorial decision on a manuscript. We also explained some of the differences between peer reviewing research papers versus nonprimary content.

Over the years we have made several enhancements, including introducing tools to help reviewers evaluate software code 2 , and adapting a version of the Registered Reports format to review proposals for method performance comparisons 3 . Here, we describe our efforts to involve early career researchers as peer reviewers, and to bring more transparency to the peer review process.

Calling early career researchers as reviewers

Asking the same people to review time and again is neither respectful of their precious time, nor good for publishing a well-rounded journal – so we constantly strive to add new reviewers to our pool. We also continuously aim to increase the diversity of our reviewer pool, especially in terms of geographical location, gender, and career level.

We have found that early career researchers (ECRs), who are typically still working at the bench, often provide excellent technical reviews. However, as many ECRs do not yet have a long publication record, potential reviewers from this pool can be a challenge to identify. We also suspect that many reviewer reports are written or supported by postdocs or even graduate students, but unless the reviewer tells the editor this, we will never know.

Inspired by our colleagues at the Nature Reviews journals and Nature Communications 4 , we have made efforts to bring more ECRs into our reviewer pool. We strongly encourage established researchers to involve their trainees in the peer review process – but please let the editor know who they are, and as early as possible. This allows us to ensure that the trainee becomes visible to our editorial team, and to ensure they will receive proper credit for their role in peer review.

We also encourage ECRs to reach out to us! After reviewing our Aims & Scope , if you think your expertise is a good match for our research areas of interest, send a brief e-mail describing your expertise and your CV or link to a list of your publications to your favorite Nature Methods editor, or to [email protected]. We also strongly recommend a free Nature Masterclass training course on peer review , which may be especially helpful to ECRs.

Reviewer credit and transparency

Over the years, various Nature Portfolio journals, including Nature Methods , have adopted several new initiatives to ensure that reviewers are recognized for their valuable efforts.

First, we encourage all reviewers to generate an ORCiD profile and link it their Nature Portfolio account. This will ensure that verification of your reviewing activity can be automatically transferred. We also provide an email receipt when a review is submitted, which can be used as proof of reviewing activity. Reviewers can also obtain proof of activity from their Nature Portfolio accounts.

Second, we offer ‘reviewer recognition’. Reviewers may choose to be acknowledged in the “Peer review” section of a published paper, though authors may not be able to match the reviewer to their report (and authors will not learn who the reviewers were if the paper ultimately gets rejected). Reviewers, however, may sign their reports should they wish to reveal their identities to the authors at an earlier stage.

Third, we also offer ‘ transparent peer review ’, which means that the reviewers’ comments to the authors will be available as a supplementary file to a published paper. It is up to the authors to decide whether they would like the reviewer reports to be published - reviewers are informed in nearly every communication with the editorial team that publishing reviewer reports is the authors’ choice. Reviewer names will not be associated with the reports, unless the reviewers choose them to be.

We strongly encourage transparency in peer review, as we believe this produces the most robust and fair process for all. However, we understand that there are reasons why a reviewer may not feel comfortable revealing their identity, or why an author will choose not to publish the reviewer reports. We do also offer double-anonymized peer review , where both authors and reviewers are anonymous, though it has not been a very popular option, especially as the scientific community pivots towards more openess.

Finally, a word about the use of generative AI tools in peer review : an AI is neither a person nor a peer, and cannot be held accountable in a process based on trust and deep domain knowledge. The limitations and biases of generative AI tools are well-known. Furthermore, uploading manuscripts into generative AI tools can breach the confidentiality of the peer review process. Reviewers should ask the editor for advice before they utilize any kind of AI tool to support their review.

We understand that many of our authors are working in competitive fields, and we therefore consider timeliness to be essential. We aim to send authors a decision in well under 2 months from the time of submission, though circumstances can arise that make the process a bit longer.

We would like to remind our peer reviewers that if you cannot commit to a review (and a possible review of a revised paper in the future!) in a timely manner, please decline the invitation! We realize that work and life circumstances can arise that cause delays, but it is very frustrating when reviewers ghost us. Please drop us a quick line if something comes up so we determine our next steps. Finally, we greatly appreciate reviewers who take the extra time and effort to answer an editor’s follow-up questions about their or another reviewer’s report.

Peer review is a valuable service that editors organize that helps strengthen scientific papers, even if the journal’s ultimate decision is negative. Peer review however is often criticized; we appreciate it is not a perfect process and we applaud the innovations our sister journals and other publishers have initiated to enhance the system. We hope we have provided some valuable insights into our process, and we welcome your feedback and suggestions on how we can continue making improvements.

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Healthcare team resilience during COVID-19: a qualitative study

• John W. Ambrose 1 ,
• Ken Catchpole 2 ,
• Heather L. Evans 3 ,
• Lynne S. Nemeth 1 ,
• Diana M. Layne 1 &
• Michelle Nichols 1  

BMC Health Services Research volume  24 , Article number:  459 ( 2024 ) Cite this article

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Resilience, in the field of Resilience Engineering, has been identified as the ability to maintain the safety and the performance of healthcare systems and is aligned with the resilience potentials of anticipation, monitoring, adaptation, and learning. In early 2020, the COVID-19 pandemic challenged the resilience of US healthcare systems due to the lack of equipment, supply interruptions, and a shortage of personnel. The purpose of this qualitative research was to describe resilience in the healthcare team during the COVID-19 pandemic with the healthcare team situated as a cognizant, singular source of knowledge and defined by its collective identity, purpose, competence, and actions, versus the resilience of an individual or an organization.

We developed a descriptive model which considered the healthcare team as a unified cognizant entity within a system designed for safe patient care. This model combined elements from the Patient Systems Engineering Initiative for Patient Safety (SEIPS) and the Advanced Team Decision Making (ADTM) models. Using a qualitative descriptive design and guided by our adapted model, we conducted individual interviews with healthcare team members across the United States. Data were analyzed using thematic analysis and extracted codes were organized within the adapted model framework.

Five themes were identified from the interviews with acute care professionals across the US ( N  = 22): teamwork in a pressure cooker , consistent with working in a high stress environment; healthcare team cohesion , applying past lessons to present challenges , congruent with transferring past skills to current situations; knowledge gaps , and altruistic behaviors , aligned with sense of duty and personal responsibility to the team. Participants’ described how their ability to adapt to their environment was negatively impacted by uncertainty, inconsistent communication of information, and emotions of anxiety, fear, frustration, and stress. Cohesion with co-workers, transferability of skills, and altruistic behavior enhanced healthcare team performance.

Working within the extreme unprecedented circumstances of COVID-19 affected the ability of the healthcare team to anticipate and adapt to the rapidly changing environment. Both team cohesion and altruistic behavior promoted resilience. Our research contributes to a growing understanding of the importance of resilience in the healthcare team. And provides a bridge between individual and organizational resilience.

Peer Review reports

Introduction

The COVID-19 pandemic highlighted the complexity and dynamic nature of healthcare systems. It also created a unique opportunity to look at the concept of resilience through the lens of the healthcare team versus the more common approach of situating the concept within the individual or the organization. The early phase of the pandemic was marked by challenges, such as limited access to personal protective equipment, personnel shortages, drug shortages, and increased risks of infection [ 1 , 2 ]. Ensuring patient safety and proper functioning requires coordination and adaptation of the healthcare team and various processes across the health system infrastructure [ 3 , 4 ]. Resilience results from adaptive coordination which enables healthcare systems to maintain routine function in the face of all conditions [ 5 , 6 ].

Resilience in healthcare has been operationalized through resilience engineering, an interdisciplinary aspect of systems engineering focused on promotingpatient safety through the design, implementation, and management of healthcare systems [ 7 , 8 , 9 ] (e.g., how healthcare systems adapt and adjust to maneuver through the daily complexities and challenges to identify effective practices, prevent errors and maintain resilient performance) [ 6 , 8 , 9 , 10 , 11 ]. Resilient performance in healthcare is proposed to be the net result of reaching the threshold of four resilience capabilities within the system: anticipation, the ability to expect and prepare for the unexpected; monitoring, the ability to observe threats to daily system performance; responding, the ability to adapt how the performance is enacted; and learning, the ability to learn from present and past accomplishments within the system [ 12 ]. At present, there is a paucity of research on the resilience of the healthcare team as a cohesive, singular conscious source of knowledge in a highly complex healthcare system. While the resilience of both healthcare systems [ 11 , 13 ] and healthcare workers [ 14 ] has been investigated, there is a gap in knowledge specific to the resilience of the healthcare team as a unified singular consciousness. The circumstances surrounding the COVID-19 pandemic presented a unique opportunity to understand the resilience of the healthcare team in a highly complex system as a singular aware entity within the system; how it acknowledges itself, defines its purpose, and performs under extenuating circumstances. This shifts the emphasis of individual and organization resilience to the resilience in the interconnected healthcare team that extends beyond the boundary of any single person.

The adapted model situates the healthcare team as a cohesive singlular conscious source of knowledge within an intricate and highly complex system [ 15 ]. This model was designed as a bridge between resilience found in individuals within the healthcare system and the organization to emphasize the healthcare team as an aware, unified whole. Our model [ 15 ] combines the existing Systems Engineering Initiative for Patient Safety (SEIPS) model [ 16 ] (version 1), which is based on five domains (organization, person, tasks, technologies, and tools), and environment and the Advanced Team Decision Making Model [ 17 ], which includes components for team performance [ 17 , 18 , 19 ]. Team performance is comprised of team identity, team cognition, team competency, and team metacognition [ 17 , 18 , 19 ]. Team identity describes how the team identifies their purpose to help one another [ 17 ]. Team cognition describes the state of mind of the team, their focus, and common goals [ 17 ]. Team competency describes how well the team accomplishes tasks, and team metacognition describes problem solving and responsibility [ 17 , 19 ], Fig.  1 .

Healthcare Team as a cohesive, singular conscious source of knowledge in a highly complex system. The continuous variegated border represents the singularity and connectedness of the healthcare team within the system. The gears represent the processes, people, technology, and tasks within this highly dynamic healthcare system

The purpose of this qualitative research was to describe resilience in the healthcare team during the COVID-19 pandemic with the healthcare team situated as a singular conscious source of knowledge defined by its collective identity, purpose, competence, and actions. Additionally, we sought to identify factors that may facilitate or hinder the healthcare team from achieving the necessary capabilities to monitor, anticipate, adapt, and learn to meet the standard for resilient performance.

Methodology

A qualitative descriptive design [ 20 , 21 ] was employed. The interview guide was framed using the adapted model to explore various aspects of healthcare team performance (identity, purpose, competence, and cognition). These questions were pilot tested on the first 3 participants and no further changes were needed. Specifically, we aimed to investigate resilience capabilities, decision-making processes, and overall healthcare team performance.

Sampling strategy

A purposive snowball sample was used to identify healthcare team members who worked in U.S. acute care settings between January 2020–December 2020. This sampling method was used to ensure recruitment of participants most likely to have insight into the phenomenon of resilience in the acute care setting.

Inclusion criteria

To explore a wide range of interprofessional experience, participants were recruited across geographic regions and professional roles through personal contacts and social media [ 22 , 23 , 24 , 25 ]. Eligible participants included English-speaking individuals ages 20 and older with a valid personal email address, internet access, and the ability to participate in an online video interview. Potential participants had to be employed full or part-time for any period from January 2020–December 2020 in any of the following acute healthcare environments: emergency room (ER), intensive care unit (ICU), COVID- 19 ICU, COVID-19 floor, gastroenterology inpatient unit, endoscopy suite, operating room (OR), post anesthesia recovery room (PACU), pre-operative holding area, hospital administration, or inpatient medical and/or surgical patient care unit.

Exclusion criteria

Healthcare team members who did not complete the pre-screening survey or failed to schedule an interview were not enrolled.

National recruitment in the U.S

Upon approval by MUSC Institutional Review Board (IRB), registered under Pro00100917, fliers, social media posts on Twitter TM (version 9.34 IOS, San Francisco, California) and Facebook TM (version 390.1 IOS, Menlo Park, CA), and word of mouth were used to initiate recruitment efforts. Interested participants were sent a link to an electronic screening survey explaining the purpose of the study and verifying the respondents’ eligibility to participate. Informed consent was obtained from all subjects.

Data collection

Data were collected via an initial screening questionnaire to determine eligibility. Data were managed using REDCap™ (version 11.2.2) electronic data capture tools hosted at MUSC. Demographic data included age, sex, race, professional role, years of experience, geographic region, patient population served, practice specialty area, and deployment status during the pandemic. Deployment refers to the reassignment of personnel from their primary clinical area to another area to meet the demands of another clinical area without regard for the participant’s clinical expertise. Qualitative data were collected through semi-structured audio video recorded interviews to understand the healthcare team in their natural environment. Recorded interviews were conducted via Microsoft® Teams (version 1.5.00.17261, Microsoft Corporation) from the PIs private office to mitigate the risk of COVID-19 transmission and promote participation across the U.S.

Data monitoring and safety

The quality of the demographic data was monitored to ensure completeness. Potential participants who submitted incomplete responses on the questionnaire were excluded. Interviews were transcribed using software, transcriptions were reviewed and verified for accuracy, and then uploaded to MAXQDA Analytics Pro, Version 2022 (VERBI software) to facilitate data analysis. Transcripts were not returned to the participants. Qualitative codebooks, institutional review board (IRB) logs, and other study records were stored on a secure university server, with access limited to authorized study personnel. Adherence to Consolidated Criteria for Reporting Qualitative Research (COREQ) standards were maintained throughout the study and analysis [ 26 ].

Data analysis

Quantitative analysis.

Demographic data were analyzed using SPSS Statistics for MAC, version 28 (IBM). Both descriptive statistics for the continuous variables of age and years of experience (mean, standard deviation) and frequency tables (age, sex, race, role, geographic region, population served, deployment status) were analyzed.

Qualitative analysis

The Principal Investigator (PI) (JA) and senior mentor (MN) independently coded the interview transcripts. Open coding method was used to identify the categories of data [ 22 , 27 ]. Both a reflexive journal and audit trail were maintained. Codes were identified through induction from participant experiences and verified through weekly consensus meetings, while theoretical deductive analysis was guided by the adapted model and the four resilience capabilities (anticipation, monitoring, responding, learning [ 12 ]. Reflexive thematic analysis (TA) [ 28 , 29 , 30 , 31 ] was used to analyze the coded data and generate themes. Data were collected and categorized into the codebook until no further codes were identified by the PI and research mentor [ 22 , 27 ]. Participant checking was not employed.

Demographics

The eligibility pool was established based on survey completion. Eighty-nine healthcare team members opened the online screening survey; 21 were incomplete and eliminated from the dataset, which left a pool of 68 potential eligible participants. Eligible participants (100%) were contacted by email and phone to determine their interest in completing the study interview. Twenty-two participants completed screening surveys and study interviews between May–September 2021, equating to a 32.5% enrollment rate. Participant interviews lasted between 21 and 91 min with an average of 43 min. None of the interviews were repeated. Participant demographics, including descriptive statistic and role key, are noted in Tables  1 and 2 , respectively.

Five themes were identified: team work in a pressure cooker , healthcare team cohesion , applying past lessons to present challenges , knowledge gaps , and altruistic behaviors .

Teamwork in a pressure cooker

The theme teamwork in a pressure cooker describes the relentless pressures and emotional stressors (e.g., fear, anxiety, frustration, and stress) experienced by the healthcare team from the risks and potential threats associated with COVID-19 contamination and infection. Factors associated with these pressures included risk of COVID-19 exposure, lack of COVID-19 testing, rapid changes to policies and procedures from the standard, personnel shortages, limited physical space, and limited supplies. Exemplary quotes highlighting participant descriptions of these pressures or subthemes are noted in Table  3 .

The healthcare team described an unprecedented level of stress in the workplace as the healthcare team had to adjust to rapidly changing protocols. The lack of protective equipment, shortage of providers to perform patient care and a lack of a familiar clinical routine saturated them in overwhelming pressure and emotions that stuck to them as they navigated uncharted territory. Exemplary quotes highlighting the healthcare team’s descriptions of these emotions are noted in Table  4 .

“It was…uncharted territory for me.” (P1, DIR) “You were stuck in a situation you never— you didn’t know when it was going to end.” (P4, RN PACU) “They have not enough staff—they can’t do it—they—I don’t know what we’re going to do.” (P6, DIR). “When we deployed—trying to get re-accustomed to the changes—with the needs that had to be met was very difficult.” (P10, RN ENDO) “I wasn’t about to sign up for extra time working in under those stressful conditions.” (P17, RN PACU)

The fear of the unknown, combined with the constant need to adapt to rapidly changing circumstances, led to widespread stress, frustration, anxiety, and exhaustion within the healthcare team. This theme was characterized by the constant pressure both inside and outside of work experienced by the healthcare team.

“Driving to the hospital, crying, driving back from the hospital, crying, still doesn’t sum it up— surrounded by people who were just dying. And what could you do?” (P6, DIR) “It was constant. It was terrible. I couldn’t sleep at night. I’d wake up worried.” (P8, ER MD) “It was kind of like just keep sending the Calvary forward—and when one drops, you just walk over them.” (P17, RN PACU) “It was always there—COVID here, COVID there—you never could just completely get away from it. It was basically the center of everybody’s conversation everywhere you went or if you were on the phone with somebody.” (P18, RN COVID ICU) “I was having to call my parents before I’d leave my apartment to go into work— to vent to them and cry— to let out my frustration and my anxiety—and have them essentially convince me to go into work.” (P19, RN ICU). “Working so much— COVID was all that was on my brain—and it was a lot of pressure.” (P22, MGR)

Working during COVID-19 challenged the resilience of the healthcare team in the face of constant fear and uncertainty. The pressure to maintain team performance, while dealing with constant fear associated with the pandemic effected the healthcare team’s resilience.

“I have to tell you that after being in hospital—I don’t feel resilient right now— doing all the things I’ve done—I just want to be out of the hospital— [crying] I can tell you that it will stay with me the rest of my life— It will always stay with me.” (P6, DIR) “I feel like my team has used up all of their resilience. I don’t think there’s much left.” (P8, ER MD)

However, one team member stood out as an exception. They reported the pressures from the environment helped them to make decisions. This demonstrates that environmental pressures affect members of the healthcare team differently. They reported that the pressure and intensity of the situation sharpened their focus and allowed them to make choices more quickly and effectively.

“I make better decisions when I’m under pressure.” (P22, MGR)

Healthcare team cohesion

The theme healthcare team cohesion describes the unique experience of working together during the pandemic that created a means among the healthcare team to form close relationships and unite. This bond was characterized by the emergence of strong interpersonal connections among healthcare professionals during the COVID-19 pandemic. These connections shaped healthcare team relationships and were a factor in the collaborative decision-making processes within healthcare team for their day-to day functions. This cohesive bonding was fueled by the stress and uncertainty of the situation, which brought the healthcare team together illustrated by their solidarity, camaraderie, trust, and empowerment.

“All those decisions, important decisions were made together.” (P7, CRNA) “Everyone felt like they were they were, you know, in a in a battle zone and on the same side—and so that kind of brought people together.” (P8, ER MD) “I think our team worked as one.” (P11, CEO)

Solidarity described the sense of unity evident among the members of the healthcare team. This was characterized by connectedness and a sense of reliance on one another that promoted teamwork and resilience within the team from support both given and received. The sub-theme camaraderie described the close personal connection and support between the healthcare team that went beyond normal social interactions prior to the pandemic. These connections were filled with trust and respect for other healthcare team members.

“I think we were all trying to do the best we could do and help each other do the best they could do—I think early on just camaraderie helped a lot within the department and, you know, just relying on each other for support.” (P8, ER MD) “We knew that we can depend on each other and we all had different skill sets— I think that that was very important—that made us feel secure— rather than going alone.” (P10, RN ENDO) “We [The ICU Nurses] developed a sense of camaraderie that I mean, it’s nothing I’ve ever felt before, like we had to trust each other with our licenses, with our own health—my resiliency came from my coworkers.” (P14, CHG RN) “One of the things that I think the pandemic did in a positive—was—I believe that the teams that I worked for really started to solidify. We leaned on each other. I felt more of a team environment than I had had pre-pandemic—I felt that people were a bit better together. We all needed each other, and we all leaned on each other, and we gave each other support—more so than before COVID- 19.” (P15, CRNA) ”The nurses on the unit were always there for me—they became my friends— my family.” (P19, RN ICU)

The sub theme of empowerment referred to the ability of the healthcare team to confidently make decisions and assume responsibility for their actions within the healthcare setting. This process involved a sense of authority and the ability to exercise agency in decision-making together to respond and adapt to the demands the healthcare team experienced. The combination of solidarity, camaraderie, trust, and empowerment resulted in a strong sense of cohesion within the healthcare team which led to improved relationships and enhanced resilience in their performance.

“I felt that I felt that the team—we all needed each other and we all leaned on each other and we gave each other support—more so than before COVID.” (P15, CRNA) “How do you want to handle this? What’s the plan?—and we collaborated in the true sense of collaboration.” (P15, CRNA) “We just knew that we could count on each other—we knew that we could count on each other at any time if we had questions, because we all worked so closely together during this. We really became a really tight knit group, and it was great.” (P22, MGR)

The benefits of the cohesion found in the healthcare team were significant and apparent during the COVID-19 pandemic. The strengthened relationships and increased resilience allowed for improved communication and collaboration, leading to better patient care and outcomes. Despite these advantages, it was noted by one participant that the relationships developed were not sustained beyond the peak of the pandemic.

“Now that COVID is kind of at bay in our area, it’s kind of gone back to the same way it was— it has not stuck.” (P15, CRNA)

Applying past lessons to present challenges

The theme applying past lessons to present challenges describes how the knowledge and understanding gained from prior participant experiences was used to adapt to the novel clinical and infrastructural challenges faced during the pandemic. Past experiences facilitated the healthcare team to strategize ways to meet the demands of the healthcare system during this time.

Participants described two strategies the healthcare team used to improve the system’s ability to adapt and function effectively: changing roles and deploying personnel. The process of changing roles involved assigning new responsibilities to individuals based on priority-based initiatives, while deployment involved transferring clinical staff from areas with lower patient care needs to those with higher needs to optimize their utilization. Eleven participants (50%) were affected by these strategies. Of these, 73% were assigned to clinical areas for direct patient care, while the remaining 27% underwent a role change to support the operational needs of the system. The participants’ preexisting work relationships, specialized clinical expertise, and leadership abilities helped them adapt to their new clinical and non-clinical roles, which in turn enhanced the resilience of the healthcare team.

“We wanted to make sure that we were putting people into the right area where their skill set could be used the best.” (P1, DIR) “I’m known for moving people forward—I’m also well known for speaking up when I don’t think it is right and there was a lot of stuff that I didn’t think was right— and not only speaking up, I’m also going to come with the solution.” (P6, DIR)

Participants indicated the lessons learned from prior experience positively impacted team performance and improved patient care outcomes. There were two significant examples in the data: the perspective of a nurse who was redeployed to work in an obstetrics unit (P5, ENDO RN) and the perspective of a nursing director (P6, DIR) whose role was changed to develop a program to ensure adequate staffing.

“Because we [the team of interprofessionals] were all very familiar with what we had to do at the task, at handit [the experience of the provision of care] was very fluid—I think it’s because of our years of experience and working with each other for so long that it just worked out very well ”. (P5, ENDO RN) “Staff believed in me when I said I would do something— I could galvanize people because of my reputation of caring for staff, so I was chosen specifically because of my ability to move people forward in spite of things.” (P6, DIR)

Participants identified being assigned to unfamiliar clinical areas or working with unfamiliar patient populations as a barrier that hindered their ability to adapt to clinical situations. The lack of clinical competence among some personnel led to an increase in workload for other healthcare team members, who had to provide additional instruction and guidance on how to complete the task. Decision-makers who deployed nursing staff to a clinical area with higher staffing needs may have believed that the individual nurse had specific clinical skills that would be helpful in that area, and this was not the case.

“She [the patient] felt like it was that he [the new nurse]—really didn’t know what he was doing—not only were we kind of reintroduced to that role of caring for patients where we haven’t been recently, but we’re also in a teaching mode, too, for the new nurses—we had to prioritize how sick the patients were, from basic vital signs to wound dressings to respiratory, and help those new nurses know which to attend to first.” (P10, RN ENDO) “Nurses weren’t really put in a place with enough support and enough resources to be able to do a job, and to do a job that maybe they haven’t done for a few years.” (P10, RN ENDO)

The participants indicated that clinical competencies of a healthcare provider in one patient population may not necessarily be applicable to another patient group. For instance, a neonatal intensive care unit (NICU) nurse who has experience in managing Extra Corporeal Membranous Oxygen (ECMO) in newborns may not have the necessary skills to care for adult ECMO patients in an adult COVID-19 intensive care unit.

“The ECMO nurse was a NICU nurse, so she really could not help me.” (P14, CHG RN)

Knowledge gaps

The theme knowledge gaps refers to the disparity between the existing knowledge of the healthcare team and the knowledge required for the team to effectively respond and adapt to the needs of the healthcare system. The lack of COVID-19 specific knowledge led to gaps in the healthcare team’s understanding, while the lack of communication made it difficult for necessary information to be effectively conveyed and received (e.g., medical logistics, human resources, and other operational policies and procedures). This knowledge gap created a barrier to healthcare team resilience as their capacities to surveil, anticipate, and respond were diminished from the lack of knowledge.

“That [information] is pretty fundamental to how you [the healthcare team] function.” (P17, RN PACU) “I don’t think any amount of preparation could have actually prepared us for how bad COVID was—but we were very, very, very unprepared.” (P18, RN COVID ICU) “It was confusing, it was disruptive to the patients that we had there. They sensed that. And that’s— OK—screw with me, screw with my colleagues, but don’t screw with the patient.” (P21, RN ENDO)

All the participants in leadership roles during the COVID-19 pandemic emphasized the importance of having a thorough understanding of the information and effectively communicating it to the frontline healthcare team members most involved in providing patient care.

“There’s nothing worse than having to learn something in the moment and not being prepared for it.” (P1, DIR) “That made us communicate in multiple ways throughout a day because we all know people learn and adapt it could be in print. It could be in person; it could be a video. We tried to have multiple ways of getting messages out and knowing we needed to repeat messages because this was so unknown, and people were so stressed.” (P11, CEO)

One team member (P13, CRNA), highlighted areas where there were gaps in knowledge in greater detail.

“It was as if the unit was being run by all these sort of substitute teachers that were called in at the last minute. Nobody knew where stuff was—nobody knew what the protocol was—the communication was terrible.” (P13, CRNA)

The cumulative effect from the knowledge gaps contributed to the lack of a practical working knowledge for the healthcare team and affected the healthcare team’s ability to anticipate what needed to be done and adapt their performance to accomplish it. Despite knowledge gaps, healthcare team members reported their capability to learn was facilitated by incremental gains in practical knowledge through their experience over time.

“—people got to be experts at protecting patients and keeping themselves safe.” (P8, ER MD) “I think it kind of was like on the job training at that point, I felt like we were all just trying to survive—learning was like—you went out —then you came back, and you would share how things went.” (P15, CRNA) “You tried to educate yourself so you could be safe.” (P17, RN PACU)

The participant responses received from the leadership (CNO, Directors, and Manager) and front-line personnel (administrative staff, nurses, and physicians) regarding the importance of communication highlighted a difference in perspective. Leadership exhibited a strong commitment toward effective communication and made efforts to ensure all healthcare team members were well informed. On the other hand, the frontline participants indicated instances where communication strategies were not perceived as effective.

“I wasn’t contacted by a manager from the unit or anything to be able to reassure, reassure me that things were being followed through and it should be okay, so that was tough.” (P10, RN ENDO) “It really seemed like there was no communication between—like staffing and the floor—we would get up to the floor and they would say, who are you? What are you doing here? What are we supposed to do with you?” (P20, RN OR)

Altruistic behaviors

The theme altruistic behaviors , encompasses the participants’ perception of their obligation and accountability to their patients and healthcare team, and their steadfastness in supporting the healthcare team even if it meant facing personal or professional repercussions. This readiness to aid the healthcare team and accept consequences showcased their altruism and commitment to the healthcare team. The team’s dedication to both their patients and each other was a primary focus driven by a strong sense of responsibility and obligation.

“I want to be able to look myself in the mirror and feel like I did the right thing—.” (P6, DIR) “My resiliency came from my coworkers. I wanted to come back to work to help them.” (P14, RN COVID ICU) “People really looked out for each other—and people were really kind and compassionate to each other—we all were in this together.” (P15, CRNA) “I’m grateful for the experience that I had and all of the different patients that I was able to help in my time there definitely solidified that being a nurse is what I needed to do—and why I chose the profession is exactly what I should have been doing.” (P19, RN ICU) “You just have to go with what seems right—.” (P22, MGR)

A defining characteristic of this theme was a willingness to endure consequences for the benefit of the healthcare team. These consequences varied from contracting the virus, facing criticism from the healthcare team, to foregoing financial incentives, and even job loss.

“I felt like I was punished for speaking up and I was punished for doing the right thing for patients.” (P6, DIR) “I mean, I literally broke the law so many times. Do you know how many times I started pressors [vasoactive drugs to increase blood pressure] on patients that I had no orders for [because a physician would not enter the ICU]?” (P14, CHG RN)

We identified five key themes based on the coded data; namely teamwork in a pressure cooker , healthcare team cohesion , applying past lessons to present challenges , knowledge gaps , and altruistic behaviors . The researchers propose that stressors arising from the COVID-19 pandemic had an impact on the healthcare team’s resilience. In addition, strong healthcare team cohesion, selfless behaviors among the healthcare team, shared knowledge, and job competence within the healthcare team, enhanced resilient performance.

The healthcare team experienced significant stress and uncertainty, due to the COVID-19 pandemic. This is consistent with previous research that has shown that the unprecedented nature of the pandemic led to challenging working conditions, limited resources, lack of information, and concerns about infecting loved ones [ 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 ]. The collective global impact of COVID-19 on healthcare systems is likely a contributing factor to these stressors [ 45 , 46 , 47 , 48 ].

Our study, along with those conducted by Anjara et al. (2021)[ 49 ] and Kaye-Kauderer et al. (2022) [ 50 ], found that solidarity and camaraderie among healthcare professionals improve resilience. Specifically, Anjara et al. observed increased collaboration among the healthcare professionals they studied in Ireland during the COVID-19 pandemic, while Kaye-Kauderer et al. identified team camaraderie among their sample of front-line healthcare workers from New York. Kinsella et al. (2023) [ 51 ] reported that COVID − 19 offered frontline workers in the UK the opportunity to work together toward a common goal. Potential explanations for these findings align with the concepts of social capital proposed by Coleman [ 52 ] and social identification with other as proposed by Drury [ 54 ]. Coleman suggests an individual’s skills and capabilities are enhanced through their interdependent relationships with others [ 52 ]. Drury found in communities affected by disasters, mutual aid and support emerged from a shared social identity, which serves to strengthen the community [ 53 ]. Brooks et al. (2021) [ 54 ] conducted a study with healthcare, police, and commercial sectors in England. They found it was important for these individuals to receive support from and provide support to their colleagues to mitigate the psychological impact of disaster exposure [ 54 ]. In addition, like our findings, Aufegger and colleague’s 2019 systematic review [ 55 ] found that social support in acute care healthcare teams creates a supportive atmosphere where team members help each other communicate problems, fulfill needs, and deal with stress.

Our results are consistent with those of Liu et al. (2020) [ 32 ] and Banerjee et al. (2021) [ 44 ] who each found that healthcare professionals frequently feel a sense of personal responsibility to overcome challenges. One potential explanation for this may be the influence of collectivism in their cultures. Similarly, our study suggests the sense of camaraderie among healthcare professionals may also contribute to a sense of responsibility and increased altruistic behavior. However, other studies have highlighted different perspectives on healthcare professionals’ sense of responsibility and duty. Godkin and Markwell’s (2003) [ 56 ] revealed that healthcare professionals’ sense of responsibility during the Severe Acute Respiratory Syndrome (SARS) outbreak was dependent on the protective measures and support offered by the healthcare system where most SARS infected patients were hospitalized. More recently, Gray et al. (2021) reported that nurses’ sense of responsibility stems from their ethical obligations, regardless of potential personal or familial risks [ 57 ].

The altruistic behaviors described by our participants helped maintain the performance of the healthcare team. It is too soon to see the long-term impact from working in this high-pressure environment; however, past research by Liu et al. (2012) [ 58 ] and Wu (2009) [ 59 ] demonstrated that “altruistic-risk acceptance” during the SARS outbreak was shown to decrease depressive symptoms among hospital employees in China.

Our research on resilience has important implications for healthcare organizations and professionals. In order to ready themselves for forthcoming events, healthcare systems must emphasize the significance of shared knowledge and its influence on the healthcare team’s ability to foresee and monitor effectively. This knowledge can help the healthcare organization function as a unified entity, rather than as individuals in separate roles or clusters within the organization to improve healthcare team preparedness. Establishing a cohesive, clinically competent healthcare team benefits the organization and the patients served. Measures to enhance social support, improve communication and ensure clinical competence maintain healthcare team resilience.

There are several limitations to consider when interpreting the results of this study. First, the sample was obtained using purposive snowball sampling, which may have introduced sampling bias and may not accurately represent the larger population of healthcare team members who worked during the COVID-19, as 95% of the sample were white. Second, our study did not have equal representation of all interprofessional team members. It is possible that a more heterogenous sample regarding role, race and gender may have introduced additional codes. Additionally, the PI (JA) worked as a Certified Registered Nurse Anesthesiologist (CRNA) in acute care during the pandemic and personal experience may have introduced confirmation bias. Also, the focus of our research was to fill a gap in the existing knowledge of what is known about healthcare team resilience in pandemic disasters, and help to answer if and how it intersects with individual and organizational resilience. It is possible this novel conceptualization of healthcare team as a cohesive singular conscious source of knowledge did not adequately address this.

Steps to ensure rigor and mitigate any potential shortcomings of qualitative data analysis were the maintenance of a reflexive journal, a willingness of the PI to let go of unsupported ideas and constant verification of codes and themes with the research mentor (MN) for coherence and consistency within the coded data, selected methodology and research questions.

Overall, the extracted themes of teamwork in a pressure cooker; healthcare team cohesion; applying past lessons to present challenges; knowledge gaps; and altruistic behaviors illustrate comparable experiences within the healthcare team. As healthcare professionals and organizations continue to navigate the challenges of the COVID-19 pandemic and other crises, our findings provide valuable insights into how team cohesion, along with altruistic behaviors, may enhance resilience capabilities to create and maintain a unified resilient healthcare team.

Data availability

The data for this study are confidential as required by the IRB approval. To protect the anonymity of the participants, the data are not publicly available. Additional information about the research method, Interview questions, informant data, and the study in general can be requested from the corresponding author, J.A.

Berlin G, Singhal S, Lapointe M, Schulz J. Challenges emerge for the US healthcare system as COVID-19 cases rise. 2020;9.

Stevens JP, O’Donoghue A, Horng S, Tabb K. Healthcare’s earthquake: Lessons from complex adaptive systems to develop Covid-19-responsive measures and models. 2020.

Kopach-Konrad R, Lawley M, Criswell M, Hasan I, Chakraborty S, Pekny J, et al. Applying systems Engineering principles in improving Health Care Delivery. J Gen Intern Med. 2007;22(S3):431–7.

Article   PubMed   PubMed Central   Google Scholar  

Compton WD, Fanjiang G, Grossman JH, Reid PP. Institute of Medicine (U.S.), National Academy of Engineering. Building a better delivery system: a new engineering/health care partnership [Internet]. Washington, D.C.: National Academies Press; 2005 [cited 2021 Feb 12]. http://public.ebookcentral.proquest.com/choice/publicfullrecord.aspx?p=3378176 .

Hollnagel E, Woods DD. Resilience Engineering concepts and precepts. 1st ed. Boca Raton, FL: CRC Press/Routledge/Taylor & Francis Group; 2006. p. 416.

Google Scholar  

Wiig S, O’Hara JK. Resilient and responsive healthcare services and systems: challenges and opportunities in a changing world. BMC Health Serv Res. 2021;21(1):1037.

Nemeth C, Wears RL, Patel S, Rosen G, Cook R. Resilience is not control: healthcare, crisis management, and ICT. Cogn Tech Work. 2011;13(3):189–202.

Article   Google Scholar  

Hollnagel E. Safety-II in Practice: Developing the Resilience Potentials [Internet]. 1st ed. Routledge; 2017 [cited 2022 May 7]. https://www.taylorfrancis.com/books/9781351780766 .

Braithwaite J, Wears RL, Hollnagel E. Resilient health care: turning patient safety on its head. Int J Qual Health Care. 2015;27(5):418–20.

Article   PubMed   Google Scholar  

Madni AM, Jackson S. Towards a conceptual Framework for Resilience Engineering. IEEE Syst J. 2009;3(2):181–91.

Carthey J. Institutional resilience in healthcare systems. Qual Health Care. 2001;10(1):29–32.

Article   CAS   PubMed   PubMed Central   Google Scholar  

Hollnagel E. The Four cornerstones of Resilience Engineering. In: Dekker, editor. Resilience engineering perspcetives. E. Hollnagel&S. Ashgate: Farnham, UK; 2009. pp. 117–33.

Fridell M, Edwin S, von Schreeb J, Saulnier DD. Health System Resilience: what are we talking about? A scoping review mapping characteristics and keywords. Int J Health Policy Manag. 2019;9(1):6–16.

Article   PubMed Central   Google Scholar  

Curtin M, Richards HL, Fortune DG. Resilience among health care workers while working during a pandemic: a systematic review and meta synthesis of qualitative studies. Clin Psychol Rev. 2022;95:102173.

Ambrose JW, Layne DM, Catchpole K, Evans H, Nemeth LS. A qualitative protocol to examine Resilience Culture in Healthcare teams during COVID-19. Healthcare. 2021;9(9):1168.

Carayon P, Hundt AS, Karsh B, Gurses AP, Alvarado CJ, Smith M, et al. Work system design for patient safety: the SEIPS model. Qual Saf Health Care. 2006;15(Suppl 1):i50–8.

Thordsen ML, Kyne MM, Klein G, A Model of Advanced Team Decision Making and Performance.: Summary Report: [Internet]. Fort Belvoir, VA: Defense Technical Information Center; 1994 Sep [cited 2021 Feb 13]. http://www.dtic.mil/docs/citations/ADA400497 .

Zsambok CE. Advanced Team Decision Making: A Model and Training Implications.

Klein GA. Sources of power: how people make decisions. MIT Press; 1988.

Doyle L, McCabe C, Keogh B, Brady A, McCann M. An overview of the qualitative descriptive design within nursing research. J Res Nurs. 2020;25(5):443–55.

Siedlecki SL. Understanding descriptive research designs and methods. Clin Nurse Spec. 2020;34(1):8–12.

Crabtree BF, Miller WL. Doing qualitative research. Second. Thousand Oaks, CA: Sage; 1999. p. 406.

Bradley EH, Curry LA, Devers KJ. Qualitative Data Analysis for Health Services Research: developing taxonomy, themes, and theory. Health Serv Res. 2007;42(4):1758–72.

Gale NK, Heath G, Cameron E, Rashid S, Redwood S. Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Med Res Methodol. 2013;13(1):117.

Lincoln Y, Guba E. Naturalistic Inquiry. California: Sage; 1985.

Book   Google Scholar  

Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–57.

Saldaña J. The coding manual for qualitative rearchers. Los Angeles, USA: Sage; 2021.

Boyatzis RE. Transforming qualitative information: thematic analysis and code development. Thousand Oaks, CA: SAGE Publications Ltd; 1998.

Braun V, Clarke V. What can thematic analysis offer health and wellbeing researchers? Int J Qualitative Stud Health Well-being. 2014;9(1):26152.

Braun V, Clarke V. Thematic analysis. In: Cooper H, Camic PM, Long DL, Panter AT, Rindskopf D, Sher KJ, editors. APA handbook of research methods in psychology, Vol 2: Research designs: Quantitative, qualitative, neuropsychological, and biological [Internet]. Washington: American Psychological Association; 2012 [cited 2022 May 15]. pp. 57–71. http://content.apa.org/books/13620-004 .

Braun V, Clarke V. Conceptual and design thinking for thematic analysis. Qualitative Psychol. 2022;9(1):3–26.

Liu Y, Zhai Z, Han Y, Liu Y, Liu F, Hu D. Experiences of front-line nurses combating coronavirus disease‐2019 in China: a qualitative analysis. Public Health Nurs. 2020;37(5):757–63.

Catania G, Zanini M, Hayter M, Timmins F, Dasso N, Ottonello G, et al. Lessons from Italian front-line nurses’ experiences during the COVID‐19 pandemic: a qualitative descriptive study. J Nurs Manag. 2021;29(3):404–11.

Croghan IT, Chesak SS, Adusumalli J, Fischer KM, Beck EW, Patel SR et al. Stress, Resilience, and Coping of Healthcare Workers during the COVID-19 Pandemic. Journal of Primary Care and Community Health [Internet]. 2021;12. https://www.scopus.com/inward/record.uri?eid=2-s2.0-85104122303&doi=10.1177%2f21501327211008448&partnerID=40&md5=96ad0164880c9725ce14d534e3c3117

Arnetz JE, Goetz CM, Arnetz BB, Arble E. Nurse reports of stressful situations during the COVID-19 pandemic: qualitative analysis of survey responses. IJERPH. 2020;17(21):8126.

Dagyaran I, Risom SS, Berg SK, Højskov IE, Heiden M, Bernild C, et al. Like soldiers on the front– a qualitative study understanding the frontline healthcare professionals’ experience of treating and caring for patients with COVID-19. BMC Health Serv Res. 2021;21(1):666.

Goh Y, Ow Yong QYJ, Chen TH, Ho SHC, Chee YIC, Chee TT. The impact of COVID-19 on nurses working in a University Health System in Singapore: a qualitative descriptive study. Int J Mental Health Nurs. 2021;30(3):643–52.

LoGiudice JA, Bartos S. Experiences of nurses during the COVID-19 pandemic: a mixed-methods study. AACN Adv Crit Care. 2021;32(1):14–26.

O’Brien JM, Bae FA, Kawchuk J, Reimche E, Abramyk CA, Kitts C et al. We were treading water. Experiences of healthcare providers in Canadian ICUs during COVID-19 visitor restrictions: a qualitative descriptive study.

Perraud F, Ecarnot F, Loiseau M, Laurent A, Fournier A, Lheureux F, et al. A qualitative study of reinforcement workers’ perceptions and experiences of working in intensive care during the COVID-19 pandemic: a PsyCOVID-ICU substudy. Sharma GA, editor. PLoS ONE. 2022;17(3):e0264287.

Shanafelt T, Ripp J, Trockel M. Understanding and addressing sources of anxiety among Health Care professionals during the COVID-19 pandemic. JAMA. 2020;323(21):2133.

Article   CAS   PubMed   Google Scholar  

Speroni KG, Seibert DJ, Mallinson RK. Nurses’ perceptions on Ebola Care in the United States, Part 2: a qualitative analysis. JONA: J Nurs Adm. 2015;45(11):544–50.

Sonis J, Pathman DE, Read S, Gaynes BN, Canter C, Curran P, et al. Effects of Healthcare Organization Actions and policies related to COVID-19 on Perceived Organizational Support among U.S. internists: a National Study. J Healthc Manag. 2022;67(3):192–205.

PubMed   Google Scholar  

Banerjee D, Sathyanarayana Rao TS, Kallivayalil RA, Javed A. Psychosocial Framework of Resilience: navigating needs and adversities during the pandemic, a qualitative exploration in the Indian Frontline Physicians. Front Psychol. 2021;12:622132.

Freudenberg LS, Paez D, Giammarile F, Cerci J, Modiselle M, Pascual TNB, et al. Global impact of COVID-19 on Nuclear Medicine departments: an International Survey in April 2020. J Nucl Med. 2020;61(9):1278–83.

Haldane V, Morgan GT. From resilient to transilient health systems: the deep transformation of health systems in response to the COVID-19 pandemic. Health Policy Plann. 2021;36(1):134–5.

Shrestha N, Shad MY, Ulvi O, Khan MH, Karamehic-Muratovic A, Nguyen USDT, et al. The impact of COVID-19 on globalization. One Health. 2020;11:100180.

Jean WC, Ironside NT, Sack KD, Felbaum DR, Syed HR. The impact of COVID-19 on neurosurgeons and the strategy for triaging non-emergent operations: a global neurosurgery study. Acta Neurochir. 2020;162(6):1229–40.

Anjara S, Fox R, Rogers L, De Brún A, McAuliffe E. Teamworking in Healthcare during the COVID-19 pandemic: a mixed-method study. IJERPH. 2021;18(19):10371.

Kaye-Kauderer H, Loo G, Murrough JW, Feingold JH, Feder A, Peccoralo L, et al. Effects of Sleep, Exercise, and Leadership Support on Resilience in Frontline Healthcare workers during the COVID-19 pandemic. J Occup Environ Med. 2022;64(5):416–20.

Kinsella EL, Muldoon OT, Lemon S, Stonebridge N, Hughes S, Sumner RC. In it together? Exploring solidarity with frontline workers in the United Kingdom and Ireland during COVID-19. Br J Social Psychol. 2023;62(1):241–63.

Coleman JS. Social Capital in the creation of Human Capital. Am J Sociol. 1988;94:S95–120.

Drury J, Carter H, Cocking C, Ntontis E, Tekin Guven S, Amlôt R. Facilitating collective psychosocial resilience in the Public in emergencies: twelve recommendations based on the Social Identity Approach. Front Public Health. 2019;7:141.

Brooks SK, Dunn R, Amlôt R, Rubin GJ, Greenberg N. Protecting the psychological wellbeing of staff exposed to disaster or emergency at work: a qualitative study. BMC Psychol. 2019;7(1):78.

Aufegger L, Shariq O, Bicknell C, Ashrafian H, Darzi A. Can shared leadership enhance clinical team management? A systematic review. LHS. 2019;32(2):309–35.

Godkin D, Markwell H. The Duty to Care of Healthcare Professionals: Ethical Issues and Guidelines for Policy Development. Submitted to SARS Expert Panel Secretariat.:23.

Gray K, Dorney P, Hoffman L, Crawford A. Nurses’ pandemic lives: a mixed-methods study of experiences during COVID-19. Appl Nurs Res. 2021;60:151437.

Liu X, Kakade M, Fuller CJ, Fan B, Fang Y, Kong J, et al. Depression after exposure to stressful events: lessons learned from the severe acute respiratory syndrome epidemic. Compr Psychiatr. 2012;53(1):15–23.

Wu P, Fang Y, Guan Z, Fan B, Kong J, Yao Z, et al. The psychological impact of the SARS Epidemic on Hospital employees in China: exposure, risk perception, and Altruistic Acceptance of Risk. Can J Psychiatry. 2009;54(5):302–11.

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Acknowledgements

The authors want to thank all the interviewed healthcare team participants for their time and sharing their personal stories and for their continued service during the COVID-19 pandemic. We would also like to acknowledge Ayaba Logan, the Research and Education Informationist, Mohan Madisetti, the MUSC College of Nursing Director of Research, the staff of the MUSC Center for Academic Excellence and the reviewers of this journal for their constructive criticism.

This research (software, transcription services, etc.) was solely funded by the Principal Investigator, J.A.

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Conceptualization J.A., K.C., L.N., D.L., H.E., and M.N.; methodology J.A. and M.N.; J.A. led the study, recruited the interviewees, conducted interviews, led the data analysis, and drafted the manuscript. J.A., and M.N. conducted the data analyses; review and editing K.C., H.E., D.L., and M.N.; supervision M.N.; research project administration J.A. and M.N.; funding acquisition J.A. All authors reviewed the manuscript.

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Ambrose, J.W., Catchpole, K., Evans, H.L. et al. Healthcare team resilience during COVID-19: a qualitative study. BMC Health Serv Res 24 , 459 (2024). https://doi.org/10.1186/s12913-024-10895-3

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Pregnant and postpartum women’s experiences of the indirect impacts of the COVID-19 pandemic in high-income countries: a qualitative evidence synthesis

• Annie Tan 1 , 2 , 3 ,
• Amanda Blair 2 , 4 ,
• Caroline SE. Homer 1 , 2 ,
• Robin Digby 1 , 3 , 5 ,
• Joshua P. Vogel 1 , 2 &
• Tracey Bucknall 1 , 3 , 5  

BMC Pregnancy and Childbirth volume  24 , Article number:  262 ( 2024 ) Cite this article

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Pregnant and postpartum women’s experiences of the COVID-19 pandemic, as well as the emotional and psychosocial impact of COVID-19 on perinatal health, has been well-documented across high-income countries. Increased anxiety and fear, isolation, as well as a disrupted pregnancy and postnatal period are widely described in many studies. The aim of this study was to explore, describe and synthesise studies that addressed the experiences of pregnant and postpartum women in high-income countries during the first two years of the pandemic.

A qualitative evidence synthesis of studies relating to women’s experiences in high-income countries during the pandemic were included. Two reviewers extracted the data using a thematic synthesis approach and NVivo 20 software. The GRADE-CERQual (Confidence in the Evidence from Reviews of Qualitative research) was used to assess confidence in review findings.

Sixty-eight studies were eligible and subjected to a sampling framework to ensure data richness. In total, 36 sampled studies contributed to the development of themes, sub-themes and review findings. There were six over-arching themes: (1) dealing with public health restrictions; (2) navigating changing health policies; (3) adapting to alternative ways of receiving social support; (4) dealing with impacts on their own mental health; (5) managing the new and changing information; and (6) being resilient and optimistic. Seventeen review findings were developed under these themes with high to moderate confidence according to the GRADE-CERQual assessment.

Conclusions

The findings from this synthesis offer different strategies for practice and policy makers to better support women, babies and their families in future emergency responses. These strategies include optimising care delivery, enhancing communication, and supporting social and mental wellbeing.

Peer Review reports

As of February 2024 SARS-CoV-2 has infected over 774 million people, and 7 million deaths have been attributed to coronavirus 19 (COVID-19) infection [ 1 ]. Maternal and newborn health services are essential for pregnant and postpartum women, and the COVID-19 pandemic significantly altered provision and access to routine care. Reduced services, limited face-to-face care, transition to virtual and remote care, and limited access to maternity care providers were commonly cited as barriers to accessing quality care by pregnant and postpartum women [ 2 , 3 , 4 , 5 , 6 ]. Additionally, reduced lengths of stay within hospitals and restrictions on support people imposed by health facilities have impacted women receiving care and placed an additional burden on nursing and midwifery staff [ 7 , 8 , 9 ]. This had significant impacts on pregnant and postpartum women’s emotional and psychosocial wellbeing.

Pregnant women and their babies were at an increased risk of adverse effects if she contracted SARS-CoV-2 [ 10 , 11 ]. The direct impacts of the COVID-19 pandemic were largely focused on the clinical manifestations of SARS-CoV-2 such as symptoms, risk factors, management and treatment, as well as adverse maternal and newborn outcomes [ 12 , 13 , 14 , 15 ]. However, at a wider level, the impacts of policy changes, health system reforms and changes to maternity care services indirectly affected the provision of care for all women giving birth over this time period. Women’s experiences of the transition from pregnancy to motherhood were also impacted. For example, in many countries, pregnant women were encouraged to homestay at home, receive care through telehealth rather than face-to-face and reduce face-to-face education [ 16 , 17 ]. Isolation from family, friends and peers has negatively impacted women’s mental health, with increased levels of anxiety, depression and stress globally [ 18 , 19 , 20 , 21 ].

Since the beginning of the pandemic, there has been a plethora of qualitative studies on women’s experiences [ 19 , 22 , 23 , 24 , 25 , 26 ] – the significant volume of papers highlights the need for a clear synthesis. Reviews of qualitative evidence have reported pregnant women’s experiences of social support [ 27 ], as well as highlighting the challenges they faced as they embraced motherhood during the pandemic [ 28 ]. Collating the evidence in a systematic and transparent manner will allow policymakers to consider the indirect implications of public health restrictions on the physical, emotional, and psychosocial health and wellbeing of pregnant and postpartum women.

Qualitative evidence synthesis (QES) is an approach that can systematically collate qualitative data in a transparent manner to inform policy and practice [ 29 ]. Findings from a QES can enable a richer interpretation of a particular phenomenon and enable a greater understanding of individual experiences, views and beliefs [ 30 ]. This QES aimed to explore, describe and synthesise the experiences of pregnant and postpartum women living in high-income countries during the first two years of the COVID-19 pandemic. This research method allows a deeper understanding of their views and experiences during this time. It also facilitates identification of areas of improvement for maternity care services, to ensure high-quality care is available at all times.

A QES was undertaken to identify, evaluate and summarise findings from qualitative studies providing a cohesive and transparent documentation of the contextual variations, stakeholder preferences and experiences to ultimately influence policy and practice [ 31 , 32 ]. This type of synthesis integrates diverse perspectives, which is needed to capture the complexity of the indirect impacts of the COVID-19 pandemic on pregnant and postpartum women’s experiences. This QES was structured to include findings from qualitative studies, as well as qualitative findings from mixed-methods studies. Emphasis was placed on including different types of qualitative evidence that can potentially enrich a synthesis, such as narrative data from qualitative components of mixed-methods studies or free-text from questionnaires [ 29 ].

We followed the relevant Cochrane guidelines [ 29 ] and used the “Enhancing transparency in reporting the synthesis of qualitative research” (ENTREQ) statement to guide our approach and reporting (Supplementary 1 , S1) [ 33 ]. In addition, the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines for reporting the different phases of identifying studies was used as recommended by the ENTREQ statement (S 2 ) [ 34 ]. The protocol and systematic review were not registered.

Eligibility criteria

We defined “indirect impacts of the pandemic on women”, to mean the impact of regulations, recommendations and public health measures enforced by governments as a response to the COVID-19 pandemic had on pregnant and postpartum women and their newborns. We adopted the World Health Organization’s definition of the postpartum period beginning immediately after birth of the baby and extending to six weeks (42 days) after birth [ 35 ].

Participants within these studies were those who were pregnant or within the postpartum period, of childbearing age (15-49 years), and received any type of maternity care during the COVID-19 pandemic. Studies of women with pre-existing comorbidities were also eligible, as well as those focused on migrants, refugee populations or ethnic minority groups. To facilitate exploration of findings from women of diverse backgrounds we have used the term ‘culturally and linguistically diverse (CALD) populations’. We focussed on women living in high-income countries (HICs). Studies were included if they were conducted in countries listed in the Organisation for Economic Co-operation and Development (OECD) [ 36 ] and Human Development Index (HDI) list of “Very high human development” list [ 37 ]. This allowed for similar contexts and countries to be compared.

Eligible study designs were those that addressed the indirect impact of COVID-19 using qualitative methodologies, including phenomenology, ethnography, grounded theory studies and case studies. We also included any study that obtained data through qualitative methods for data collection such as, interviews, focus groups, online forums and document analysis.

The decision to limit the eligibility based on year of publication, to only include studies published in the first two years of the COVID-19 pandemic (1 st Jan 2020 – 1 st Jan 2022) was to emphasise the impact of the stricter restrictions and lockdowns during this time period. Globally, public health measures to reduce spread and transmission included, mandatory quarantine, limiting movement, lockdowns, closure of schools and workplaces and shielding of vulnerable populations. These measures were significantly harsher during the first two years and subsequently relaxed as vaccine roll-outs occurred and infection rates began to decline [ 38 , 39 ]. The Oxford Coronavirus Government Response Tracker reported a stringency index which reiterates the trend of harsher restrictions implemented by governments throughout 2020-2022 time period and reflects the gradual decline after this date [ 40 ].

Search strategy

Six electronic databases (EBSCO Medline, Embase, APA PsycInfo, CINAHL and Maternity and Infant Care (MIDIRS)) were searched to identify all qualitative research articles published between 1 st January 2020 – 1 st January 2022. Search strategy included terms such as, “pregnan*”, “postpartum”, “mother”, “views”, “experiences”, “opinion*”, “indirect”, “COVID-19”, “coronavirus”. The search strategy was reviewed by a university librarian (S 3 ). Search hits from each of the databases were imported into Endnote 20 which was then used as our reference library. References were imported into Covidence for screening [ 41 ].

Study selection and sampling framework

Two review authors (AT, AB) independently screened titles, abstracts and full texts for inclusion, with any conflicts resolved by discussion or consulting a third author. Reasons for exclusion are described within PRISMA flowchart (Fig. 1 ). Sixty-eight studies were included following full-text review. The Cochrane guidelines for QES highlight that for reviews with large amounts of primary studies (50 or more) can result in a high volume of data, which can threaten quality of the synthesis. In such situations, a sampling framework can enhance the quality and diversity of the papers and ensure the number of studies and amount of data are manageable [ 42 , 43 , 44 ]. A QES worked example by Ames et al., 2019 was used as a guide to develop the sampling framework for data richness [ 45 ]. Two independent reviewers scored included studies from 1 to 5 based on the criteria outlined in Table 1 , to ensure that the sampling framework was reliable and replicable. Any conflicts were resolved by discussion, or a third review author was consulted. Studies with a score ≥4 were included for data extraction and are referred to as ‘sampled’ studies (S 4 ).

Reporting of adapted PRISMA flowchart of included and sampled studies in accordance with PRISMA and ENTREQ guidelines [ 33 ]

Quality assessment

The Critically Appraisal Skills Program (CASP) tool for qualitative research was used by two independent review authors (AT, AB) to assess methodological limitations of sampled studies (S 5 ) [ 46 ]. Any disagreements were resolved through discussion, or when required, a third review author was consulted. Sampled studies were graded as no or very minor, minor, moderate or severe concerns with methodological limitations.

Data extraction and synthesis

A “Characteristics of sampled studies” table was created in Excel and details are reported in Table 2 . Two independent reviewers familiarised themselves with the sampled studies and extracted key themes using Braun and Clarke’s reflexive approach to inductive and deductive thematic analysis [ 47 ]. Data were managed using NVivo 20 [ 48 ]. This was an iterative process as many of the themes and sub-themes overlapped and were relevant in many aspects throughout the perinatal period (Table 3 ). The findings were developed iteratively, and periodically shared with the broader team to evolve our interpretation. Any quotes taken from studies were selected as they reiterated findings, and provided additional depth and meaning to review findings.

Extracted data were populated into two tables for analysis. The first table collated quotes and author interpretations of findings (S 6 ), whilst the second table summarised these into review findings (Table 4 ).

Assessment of confidence in the review findings (GRADE-CERQual)

The GRADE-CERQual tool assesses the confidence in review findings from qualitative evidence syntheses [ 83 ]. Lewin et al., 2018 state that that “the approach has been developed to support the use of findings from qualitative evidence syntheses in decision-making, including guideline development and policy formulation” [ 83 ]. The GRADE-CERQual Interactive Summary of Qualitative Findings (iSoQ) online platform was used to manage and assess confidence in review findings [ 84 ].

Confidence in review findings was determined based on four criteria: methodological limitations, coherence, adequacy and relevance [ 83 ]. For each criterion, review authors determined if there were no or very minor, minor, moderate or serious concerns. An overall GRADE-CERQual assessment of confidence was placed on the findings, levels included: high, moderate, low and very low confidence. Review findings are considered at the highest confidence level and downgraded as there are greater concerns for each individual criterion (Table 4 ). This process was conducted by two authors, with any disagreements resolved through discussion and consulting other authors.

Managing our own reflexivity

Throughout the conceptualisation, data collection and analytical process, the authors considered their own individual views and beliefs about maternity care during the COVID-19 pandemic. As clinicians and researchers working on maternity care (including during the pandemic), we recognised that the COVID-19 period impacted indirectly on women and babies, including their experiences of care, their own anxieties and worries. We are public health professionals with diverse backgrounds including nursing and midwifery, maternal and newborn health, epidemiology and qualitative health research. We met regularly, both to explore the findings and the processes but also to ensure that we separated our individual experiences and beliefs on the interpretation of the analysis and the findings. Employing a systematic and transparent approach to the analytical process, such as including reflection notes after analysing each sampled paper, facilitated collaborative discussions, ensure objectivity and reduced the impact of personal biases.

A total of 36 studies contributed to the synthesis of qualitative evidence to understand pregnant and postpartum women’s experiences during the first two years of the pandemic. There were six over-arching themes: (1) dealing with public health restrictions; (2) navigating changing health policies; (3) adapting to alternative ways of receiving social support; (4) dealing with impacts on their own mental health; (5) managing the new and changing information; and (6) being resilient and optimistic. Seventeen sub-themes were developed within these 6 themes and illustrative quotes are presented in Table 3 to demonstrate theme development. Themes were categorised to differentiate major disruptors to the pregnancy and postpartum period and sub-themes aimed to categorise the indirect impacts that occurred within the major themes.

Characteristics of contributing studies

After applying the sampling framework (data richness score ≥4), 36 sampled studies were included for data extraction and analysis. Thirteen out of 36 studies had a score of 5 [ 49 , 52 , 57 , 58 , 61 , 62 , 63 , 66 , 68 , 69 , 71 , 77 , 82 ], with the remainder scoring 4 [ 9 , 16 , 50 , 51 , 53 , 54 , 55 , 56 , 59 , 60 , 64 , 65 , 67 , 70 , 72 , 73 , 74 , 75 , 76 , 78 , 79 , 80 , 81 , 82 ] (S 5 ). Most studies ( N =27/36, 75%) used specific qualitative methodologies, six were mixed-methods studies, two were cross-sectional studies, and one was a case series report.

Studies were conducted across nine countries, almost one-third ( N =10/36, 28%) of studies published from the UK, Canada ( N =7) and the USA ( N =7) (Table 2 ). Country-specific responses to the pandemic largely included border closures, mandatory lockdowns and restrictions on movement; it is interesting to note that Sweden did not mandate this but instead enforced social distancing practices [ 68 ]. Additionally, some studies reported on a specific sub-population of pregnant and postpartum women, for example women from ethnic minority groups, those with pre-existing comorbidities, and those who were COVID-19 positive. Some studies also included results from women with babies who were greater than 6 months of age, and any findings directly from these participants were omitted from analysis where possible.

The number of participants in studies that conducted interviews ranged from 3 to 84, and studies using qualitative data from open-ended questions or survey data included responses from 16 to 4,611 participants. Where demographic data were available, approximately 1,192 women were primiparous (having their first baby) and approximately 8,017 women were surveyed or interviewed postpartum. Sampled studies were generally of high quality and assessment of methodological limitations indicated that 29 studies were assigned “no or very minor concerns”, six studies were assigned “minor concerns”, and one study was assigned “moderate concerns”. When available, quotes obtained from studies have included additional demographic data. Factors included pregnant or postpartum status at time of data collection, parity and geographical location.

Theme 1: Dealing with public health restrictions

The rapid introduction of public health restrictions has had adverse effects on mental health, social isolation, and the pregnancy experience. Women had to navigate these restrictions and adapt accordingly, realising quickly that their pregnancy and postpartum experience was going to be very different from their expectations.

Sub-theme 1.1. Limited support networks from health care system and providers (High confidence)

Support networks were limited. Women felt that they were “on their own”, “unimportant or irrelevant” or treated as “second class citizens” after birth, because of a lack of physical supports from healthcare providers [ 51 , 60 , 61 , 62 , 70 , 72 , 74 ]. Limited or no access to physical and social support networks was commonly cited as a reason for deteriorating mental health.

Sub-theme 1.2. Balancing exposure risk and need for healthy behaviours (High confidence)

Women balanced COVID-19 exposure risks by shielding, either because of health providers recommendations [ 16 , 69 ] or because they felt it was needed to protect their baby [ 50 , 68 , 71 , 77 , 81 ]. Women delayed or postponed antenatal appointments [ 50 , 57 , 69 , 72 , 82 ], opted for induction of labour [ 74 ], or waited until labour was quite advanced before attending hospital [ 60 , 61 , 77 ]. These decisions were due to pandemic-induced fear, and the perceived risk of infection in a high-risk environment such as the hospital [ 16 , 56 , 80 ].

Sub-theme 1.3: Missing out on social opportunities (High confidence)

Women felt sad, unseen and heartbroken that they were not able to have social opportunities, especially sharing their newborns with family and friends [ 9 , 54 , 56 , 61 , 66 , 70 , 71 , 75 , 76 ]. On postnatal wards, women with older children were disappointed that their nuclear families could not visit and bond with their newborn in the early postpartum period [ 56 , 59 , 80 , 82 ]. While this was disappointing for many, one woman described still feeling well-supported, “ we were supposed to have a baby shower, the weekend after everything shut down … definitely got a lot of gifts in the mail and people who drop things off …. [we] feel like even though he’s being born in this super crazy time and he doesn’t necessarily get to meet people in person, that they are excited about him and want to support us” (USA) [ 52 ]. Primiparous women felt that they missed the opportunity to share many “firsts” with extended families - one woman said, “ this is my family’s first grandchild so it just breaks my heart they will miss her whole babyhood” (postpartum, Canada) [ 64 ].

Sub-theme 1.4 : Breastfeeding challenges and triumphs (High confidence)

Women that struggled with the lack of support around breastfeeding said, " when it came time for breastfeeding, I had no idea what to do or any challenges that could come. There were so, so, so many questions and I felt so confused during everything” (postpartum, primiparous, UK) [ 60 ]. Lactation consultations through virtual remote care was considered inadequate by most women [ 51 , 66 , 71 , 73 , 75 ], especially when practical hands-on education and assistance was needed [ 51 , 53 , 72 , 77 ]. These challenges led some women to cease breastfeeding early [ 51 , 62 , 73 ].

Conversely, public health restrictions enforcing women to stay at home allowed some women to practice responsive breastfeeding, without concern for social obligations or visitors [ 51 , 62 , 64 , 71 , 75 , 79 ]. Some women valued this flexibility - “ there’s no right or wrong way. You know, at the end of the day the ultimate goal is that my baby needs to be fed.… you know, feed him breast milk, breast milk, or formula. He’s fed. He’s happy. Sweet. That’s done. Job done! The important thing is actually [to] be kind to yourself, you know?” (postpartum, primiparous, UK) [ 62 ].

Challenges and triumphs were felt by both multiparous and primiparous women [ 51 ]. The difference between experienced and first-time mothers was stark in some studies, highlighted by multiparous women who felt ‘knowledgeable’ and ‘had the experience’, and sharing empathetic messages towards primiparous women with limited breastfeeding support [ 62 , 78 ].However, the lack of face-to-face breastfeeding support meant that first-time mothers and experienced mothers also faced hardships. As one mother recounts her sadness: “ I had virtual appointments [with lactation consultants], which I found totally useless… I was devastated that it wasn’t working with [the new baby] because it was something I was really looking forward to” (postpartum, multiparous, Canada)  [ 73 ].

Theme 2: Navigating changing health policies

The ever-changing nature of the pandemic created periods of uncertainty. Women and their families were expected to accept and adapt to changing health policies which directly impacted their antenatal, labour and birth and postnatal experiences.

Sub-theme 2.1: A birthing experience filled with uncertainty and unknowns (High confidence)

Many women reported that, given the constantly changing policies, they were unsure what to expect for their labour and birth [ 9 , 49 , 60 , 75 , 77 ]. Limitations included not being able to have a water birth, use a bath or the shower, access nitrous oxide gas during labour [ 49 , 74 , 82 ] and others could not have their desired support people present [ 60 , 77 ]. In some cases, women opted for medicalised interventions to retain a sense of control - choosing a caesarean birth to ensure their partner was present at birth [ 60 , 74 ]. Women struggled with the prospect of early discharge, lacking confidence and fearing reduced support at home, with some feeling pushed out of the hospital [ 49 , 53 , 60 , 74 ]. Some women chose to leave hospital early due to the lack of support or poor experiences while in hospital [ 60 ]. Conversely, some women welcomed early discharge, wanting to be away from the hospital and to be reunited with family members [ 62 , 80 ]. Women who tested positive to COVID-19 early in the pandemic described additional challenges, such as a lack of certainty on how care was going to be managed [ 77 ]. They felt this restricted their autonomy over their labour and birth choices.

Sub-theme 2.2: Reduced support and partner presence healthcare settings (High confidence)

Due to the public health restrictions in hospitals, women often missed having their partner and family supports [ 16 , 49 , 57 , 66 , 71 ]. For example, “ one of my coping mechanisms is having my partner there to hear the same things I am hearing because I kind of shut down sometimes when I get too upset. It’s always good to have that second person listening… and walking out with strength of unity ” (pregnant, primiparous, Australia) [ 49 ]. The inability for some women to have their partners present negatively impacted women’s birthing experience [ 53 , 70 , 79 , 80 ], confidence on the postnatal ward and many expressed the sense of being “ robbed of this experience ” (pregnant, UK) [ 75 ].

Sub-theme 2.3: Transitioning to telehealth, virtual and remote care (Moderate confidence)

Public health restrictions limited face-to-face health care appointments with a maternity care provider [ 54 ]. Negative telehealth experiences were expressed predominantly by first-time mothers [ 71 ], with many saying, “ over the phone just doesn’t do it… you don’t get to look into somebody’s eyes and to trust them and for them to say, you’re okay ” (postpartum, Ireland) , adding to their anxieties. This was felt similarly by CALD women as there was a disconnect with health care providers using virtual methods and this was exacerbated for women who were not able to access interpreters [ 80 ]. Positive encounters with telehealth were associated with the increased accessibility to health services and generally preferred by multiparous women [ 54 , 65 , 68 ]. Whilst many were glad that telehealth services were available, this woman highlighted the inequities, “ I think I would question the accessibility of that. Not everyone has a smartphone and expecting people to be able to receive a video call is not necessarily the most inclusive thing ” (postpartum, primiparous, UK) [ 77 ] indicating that some women may have fallen through the gaps of maternity care.

Sub-theme 2.4: Barriers to accessing health services (High confidence)

The closure of so-called non-essential services, such as, physiotherapists, chiropractors, pools and gyms indirectly impacted women [ 66 , 74 ]. This often increased women’s anxiety, stress, feelings of helplessness and frustration [ 16 , 54 , 60 , 74 ] and incidence of postnatal depression [ 82 ]. This also limited opportunities to receive reassurance from healthcare providers, reducing women’s confidence [ 49 , 71 , 72 , 77 ]. Typically, women accessed networks for information and support, such as, family and friends with midwifery clinical expertise, or referred to recent pregnancy experience [ 52 , 68 , 75 , 79 ]. Women had to advocate strongly for physical assessments for themselves and their newborns [ 74 ].

Additionally, women from CALD populations were challenged in accessing culturally appropriate care with changes to interpretation services, “it creates like a…a gap in communication where if something you express is not clearly understood so maybe they could be left with some misinterpretation” (UK) [ 63 ]. Another example of the inequities faced by CALD women was expressed by this woman who did not receive interpretation services during appointments, “ sometimes they explained things to me by using signs and I understand a little English but it’s hard to understand medical terms and they didn’t use an interpreter for this ” (postpartum, multiparous, Canada) [ 80 ].

Theme 3: Adapting to alternative ways of receiving social support

Support networks, such as, family and friends, peer support groups (e.g. mother’s groups), and formal support from maternity care providers provide the foundation for a healthy and positive pregnancy and postpartum period. The COVID-19 pandemic forced women to adapt and seek support in different ways.

Sub-theme 3.1: Accessing support through different avenues (Moderate confidence)

Support from family and friends was accessed in different ways, for example, utilising video call technologies to be able to see faces helped with the grief of not being able to be present [ 16 ]. Women who were able to establish pregnancy and mother’s groups during the pandemic were grateful that they had these supports. Alternatively, women created or sought support through online social media platforms [ 61 , 68 , 70 , 81 ], to share a sense of camaraderie that they were not alone in their experiences [ 52 , 77 ]. In these forums, women shared information about COVID-19 developments, updates to hospital policies, and utilised others as sounding boards for advice. Some women reported greater support from partners who had transitioned to working from home [ 51 , 62 , 64 , 66 , 75 ]. Although virtual technologies allowed women to bridge the gap of social distancing, they wanted the physical connection with others.

Sub-theme 3.2: Desiring connection with family and friends (High confidence)

Women felt they needed intergenerational support to raise their newborns, and this was especially important during difficult times. Many had planned for parents to come and support them [ 81 ], as they believed that, “ the older generation have more experience on what babies need or what they feel… with my other two [children]… they knew exactly what would make them feel better ” (pregnant, multigravida, Australia) [ 49 ]. Some women struggled without the additional support, the lack of sleep impeded their physical wellbeing [ 61 , 73 , 75 ], and the isolation from family impacted their mental health [ 9 , 49 , 56 , 60 , 61 , 73 ]. In some cases, women were able to “ quarantine with family ”, providing women with a “ strong support network ” (postpartum, Canada) as they transitioned into motherhood [ 59 ]. Gradually, as public health restrictions eased, women from the UK felt government responses did not consider new mothers and babies and they called for “social bubbles” for families to receive the additional support [ 62 , 72 ]. The loss of informal support networks was apparent for some CALD women. As this woman said, “it was really hard during COVID. In Syria I had my family… but to give birth here with no one with me?! I needed someone with me, my neighbours, my friends… I felt like I was drowning” (postpartum, multiparous, Canada) [ 80 ].

Theme 4: Dealing with impacts on their own mental health

The COVID-19 pandemic placed a significant toll on pregnant and postpartum women’s mental health at all stages of the pandemic. Public health strategies failed to include protective measures for mental health, as such many women reported increased levels of fear, anxiety, stress, loneliness and depression.

Sub-theme 4.1: Managing anxiety due to virus-related fears and concerns (Moderate confidence)

Women often experienced anxiety exacerbated by the pandemic, for example, “ as a new mom you are already so nervous, so adding a pandemic to that pile of anxiety and worry ” (postpartum, Canada) [ 70 ]. This was related to possibility of infection, particularly in hospital and healthcare settings [ 9 , 56 , 57 , 69 , 82 ], and the need to protect their unborn or newborn baby [ 50 , 72 , 80 ]. Some faced additional challenges as migrants from another country, “ I found it very hard when you’re coming to the country without knowing anyone and the coronavirus, lockdown was very difficult, I was very depressed. I was very anxious… I feel worried a lot ” (UK) [ 63 ].

Sub-theme 4.2: Feeling lonely and isolated (High confidence)

Loneliness and isolation were commonly reported as women faced motherhood alone without their usual support systems. One woman said, “ it was quite sad that I couldn’t even share my pregnancy experience with anyone, and I feel like I missed out ” (postpartum, Australia) [ 54 ]. Feelings of loneliness was especially felt by mothers who were not able to have their partners present during birth or postnatally [ 61 ]. Women were not able to build supportive peer networks in their antenatal and postnatal periods [ 49 , 62 , 73 , 74 , 75 , 78 , 81 ], with one woman saying, “ there’s nothing like just meeting people or, just naturally building friendships when you go to baby groups” (postpartum, multiparous, UK)  [ 62 ] emphasising the importance of developing social relationships. Cancellation of appointments and lack of face-to-face care added to feelings of “ abandonment ” and “ being forgotten ” [ 9 , 60 , 62 , 70 , 72 , 73 ].

Theme 5: Managing new and changing information

Due to the novelty of COVID-19 and lack of information about adverse effects, maternity care services had to rapidly adapt as new data came to light. Women described the need to search, access and filter useful information, a process which was challenging for many.

Sub-theme 5.1: Constantly changing advice and information (High confidence)

The constantly changing advice was distressing [ 82 ]. These changes meant a lot of uncertainty, one woman said, “ at 34 weeks I had a telephone appointment and I tried to ask what the changes in hospitals were, because of COVID and talk about the birth plan. She basically said, ‘everything is changing so quickly there is no point in us even talking about that now. Wait until your next appointment’ ” (postpartum, primiparous, UK) [ 77 ]. This limited women’s ability to adequately plan and prepare for the birth. Some women described following the updates from government officials and hospitals overwhelming [ 66 ]. As restrictions eased, women described the frustrations they had with the slow adaptations by health services, “ when I got to the hospital, they didn’t know about the restrictions having been lifted … That was really frustrating because I was like why? Why does this hospital not know?” (Australia) [ 82 ] and the differences between health services, “ restrictions have still not been lifted in ‘Hospital A’ whereas they have been eased in both ‘Hospital B’ and ‘Hospital C’ ” (pregnant, multiparous, Ireland) [ 9 ].

Sub-theme 5.2: Inadequate information from healthcare providers (Moderate confidence)

Women felt there was not enough information from healthcare providers, “ I think there was a lot of confusion; there was no good communication about what was happening to appointments. You weren’t really sure; were they happening on the phone [telehealth], when were you going to get the call? There was very little communication. So, I always felt a bit uneasy about that… ” (postpartum, primiparous, UK) [ 77 ]. Some information was contradictory [ 60 ] for example, “ I’ve found the disconnect between the information that my GP was getting and that the [hospital] was getting – they weren’t getting the same ” (Australia) [ 82 ]. Women wanted clear information that was easily accessed by the lay person [ 9 , 16 , 54 , 61 , 65 , 66 , 67 , 68 , 75 ]. They also wanted uncertainty to be acknowledged, “ it would have been useful to have some generic information that went out to women in that situation… statements from a medical professional to put people’s minds at ease ” (postpartum, Australia) [ 54 ].

Theme 6: Being resilient and optimistic

Many women were self-reliant and took it upon themselves to remain positive and proactive throughout the perinatal period.

Sub-theme 6.1: Self-help strategies to overcome challenges of the pandemic (High confidence)

Women developed their own strategies to find solace and support [ 77 ]. When asked what advice they had for other women in similar situations, advocacy for oneself was frequently reported [ 66 , 67 , 70 , 71 , 77 , 79 , 81 , 82 ]. In contrast, another woman regretted not voicing her concerns, “ I have naively trusted that the hospital gives me the information I need … Then I realized afterwards that there were many moms who were much angrier than me and said much more; insisted much more… and I simply did not; I regret it a bit ” (postpartum, Norway) [ 67 ]. Women reported coping using different strategies, such as being outdoors and active [ 16 , 52 , 54 ], limiting news and access to social media platforms [ 54 , 69 , 70 , 81 ], seeking professional help [ 58 , 73 ], informing themselves about the virus [ 58 , 71 ], drawing on their own faith and religion [ 52 , 69 ] and self-reassurance [ 50 , 52 , 62 ]. Many complied with public health restrictions, however there were some women that decided their mental health and physical wellbeing was more of a priority and broke public health restrictions to seek support from family and friends [ 62 , 66 , 73 ]. Despite the challenges faced during the pandemic, some women reported high resilience, positive childbirth and postnatal experiences, and feeling empowered by their ability to overcome challenging circumstances [ 54 , 58 , 74 ].

Sub-theme 6.2: Making the most out of the positive encounters (Moderate confidence)

The lack of visitors on the postnatal ward and in homes was described by women as “ pleasant ”, “ relaxing ” and a “ blessing in disguise ” as women were able to recover and establish undisrupted routines with their newborns [ 54 , 71 , 72 ]. A commonly reported positive outcome of limiting social obligations was the ability to establish successful breastfeeding, one woman said, “ I was inundated with visitors with my first child and often could not feed responsively… With my second child, there is none of that pressure and I can really see an enormous difference both is his feeding and in my mental health ” (postpartum, UK) [ 51 ]. Women also described health services as “ peaceful ”, as there were fewer people in waiting rooms, appointments were quick, social distancing was enforced and use of PPE limited the possibility of transmission [ 16 , 49 , 71 , 75 , 81 , 82 ].

Sub-theme 6.3: Information seeking and desire for more information (Moderate confidence)

Women obtained information from official government documents, guidelines released by professional bodies, the news, social media and platforms run by professional academics [ 53 , 66 , 68 , 72 , 81 ]. Reasons to seek information included: to clarify any uncertainties about risk and infection, keep up to date with COVID-19 guidelines and to be informed about changes to hospital policies [ 49 , 52 , 66 , 69 , 77 ]. Even once women were provided with information, poor communication and follow up left women feeling dissatisfied [ 54 ]. One woman shared advice about engaging with different information sources – “ you can’t just trust them – you’ve got to decipher through what’s true and what’s not… Is that actually having a positive influence on me, and my mental and physical health, or not? And if it’s a no, well why am I engaging in this ?” (Australia) [ 81 ].

This QES synthesised data from 36 sampled studies on pregnant and postpartum women’s experiences from high income countries during the COVID-19 pandemic. Findings were categorised under six overarching themes and 17 review findings to understand their experiences as the pandemic unfolded. Women had to navigate the transition from pregnancy to motherhood, whilst also adapting to the complexities of the COVID-19 pandemic. High to moderate confidence was placed in these review findings, indicating the strength of the evidence.

This review highlights that pregnant and postnatal women across high-income countries faced similar yet inherently unique experiences and challenges. During the pandemic, primiparous women faced moderate-to-high prenatal stress levels, as they recounted their first pregnancy experience during a time of significant uncertainty [ 85 , 86 , 87 ]. On the other hand, some evidence highlighted that multiparous women were ‘adaptive’ and felt ‘prepared’ [ 66 , 71 , 77 ]. However this was not experienced universally - many experienced mothers facing difficulties [ 9 , 73 , 80 ]. The COVID-19 pandemic and associated public health restrictions across high-income countries disrupted access and quality of care for many pregnant and postpartum women.

Reduced health service capacity and the transition to remote and virtual care due to pandemic restrictions have been heavily criticised [ 8 , 88 ]. In many contexts, women had not received high quality maternity care during the pandemic and described overtly negative experiences [ 35 , 89 , 90 ]. Women were unable to access usual supports, had limited birth choices and reduced postpartum care which resulted in stress and anxiety. These are clearly widespread experiences, regardless of context, and highlights some of the structural weaknesses and vulnerabilities of maternity care systems. This was evident in the findings for pregnant and postpartum women of culturally and linguistically diverse backgrounds. The lack of culturally appropriate care, including access to interpretation services, doulas and being unable to have their support person present are known to impair maternal health and wellbeing [ 56 , 63 , 80 ]. These factors are key elements of respectful maternity care as they help provide information, enable women’s agency and ensure emotional and social support is available [ 91 , 92 ]. Health restrictions should not limit this service for women during times of unrest, as women and babies thrive in culturally respectful maternity services [ 93 ]. We note however that CALD women continue to be an under-represented group - only three of the 36 sampled studies reported evidence specifically for CALD groups [ 56 , 63 , 80 ]. The lack of diverse perspectives included in the evidence base makes it more difficult for culturally sensitive and community-responsive policies to be developed. Further research with women from diverse backgrounds are warranted to ensure they are not unduly disadvantaged in future pandemics [ 94 ].

A key finding was the reduced presence of partner and social support throughout the pregnancy and postpartum periods. Partner support and strong connections with extended support networks reduces stress and anxiety, and can be a positive influence on the woman and her experience [ 95 , 96 , 97 ]. In the trade-off between the risk of transmission and spread of disease, expectant fathers and partners were frequently left out [ 98 , 99 ]. Similarly, studies of families and partners of intensive care unit patients during the COVID-19 pandemic reported being physically and emotionally unable to support partners and families [ 100 , 101 ]. Close family members are essential to the recovery of patients upon discharge and partners are integral to a safe and positive pregnancy, intrapartum and postpartum experience for mothers. To ensure that maternity care services can adequately respond in the future, recommendations for some degree of flexibility for women given the long-term psychosocial impact that a negative experience would have on the woman and family unit has been sought [ 8 , 87 , 88 ].

Pregnant and postpartum women’s experiences were not universally negative. Another key finding in this review highlights the resilience and optimism that some women felt. Some women perceived this time as a “blessing in disguise” – referencing the ability to stay at home, having fewer disruptions to breastfeeding, and embracing newfound time as a family unit [ 64 , 66 , 71 ]. Coping strategies reported in this study are supported by other evidence of protective factors against stressors of the COVID-19 pandemic [ 102 , 103 , 104 ].

Maternity care services need to continue delivering care during public health emergencies. There is no possibility of delaying or postponing care; and women require care over an extended period of time. Enforced lockdowns limited movement and fear of contracting the virus in hospitals lead to delays in healthcare seeking (e.g. when there is reduced fetal movements). The pandemic altered the provision of services and women’s access to care and, as a result, some countries have reported changes to the incidences of stillbirth and preterm birth [ 105 , 106 , 107 ].

Understanding women’s experiences, their preferences and satisfaction with maternity care services are essential to a safe and positive pregnancy, labour and childbirth and postpartum period. Many maternity models of care such as woman-centred and midwifery-led care places the woman at the centre of care and her experience, focusing on woman’s health needs, expectations and aspirations [ 108 , 109 ]. These models have proven to return high levels of satisfaction and are beneficial to the psychological and physiological recovery of the woman [ 110 , 111 ]. The COVID-19 pandemic has disrupted these models of care for women who were pregnant and gave birth during the pandemic. Pressures on the maternity care system and service delivery did not facilitate the midwife-woman relationship, resulting in poorer clinical outcomes [ 112 ]. Supporting women throughout their perinatal period is essential so women and their babies are able to emerge from the experience feeling prepared, safe and satisfied [ 113 , 114 ].

Moving forward, as maternity care systems adapt to a post-pandemic structure, considerations need to be made to ensure maternity services can adequately respond to future health crises. Our QES has shown that the impacts of COVID-19 went far beyond the direct impacts on women who were infected with SARS-COV2. All women giving birth over the pandemic, especially in the first two years, were indirectly impacted and as a result experienced a lack of autonomy during their pregnancy and childbirth, barriers to accessing face-to-face care and loss of social supports. This highlights the need to consider women’s views and experiences in developing policies for future responses to pandemics or public health emergencies.

We recommend that policy makers and maternity care services should: 1) optimise care delivery to maintain face-to-face care when possible and facilitate the presence of chosen support people; 2) enhance communication channels between maternity care services and women to minimise misinformation, stress and anxiety; and 3) support social and mental wellbeing to ensure women have access to adequate social support and mental health services are well resourced.

Strengths and limitations

The rigorous and systematic methodology of this QES in selecting studies for inclusion allowed us to analyse experiences of a heterogenous cohort of pregnant and postpartum women during the COVID-19 pandemic. When we started the review, the abundance of published work of women’s experiences was overwhelming, therefore strict eligibility criteria were used to ensure that findings could be obtained and compared across studies. This study was therefore limited to experiences of women in high-income countries and cannot be generalised to low- and middle-income countries.

Studies were subject to a sampling framework to ensure that a diverse, yet data rich sample of studies contributed to the development of review findings. This had its own set of limitations as the sampling framework is not a validated tool and may be biased by the user’s own interpretation. Additionally, the search strategy was limited to the first two years of the pandemic. While it is possible research was published outside of this two-year period, we felt that it was unlikely that different experiences would be reported. An updated search (December 2022) was conducted to determine if any new themes emerged, however no new themes emerged and therefore did not warrant the addition of any new studies. Almost all studies that used interviews to collect qualitative data did so via remote methods. Telephones and video conferencing tools were popular methods to conduct interviews, adhering to social distancing guidelines. Whilst this increased accessibility for participants from diverse geographical locations, there may be concerns about the depth of data obtained and exclusion of participants that are unable to access these technologies. A further consideration is the limited number of studies exploring the experiences of women from diverse backgrounds. This prevented us from more critically examining what factors and circumstances shape women’s experiences and responses.

Women’s pregnancy and postpartum experience during the COVID-19 pandemic showcased similarities despite different contexts. This QES has collated the experiences of women from high income countries sharing insight into the challenges faced and resilience of pregnant and postpartum women. The COVID-19 pandemic has exacerbated many systemic shortfalls of the maternal and newborn health system – a system that is essential to the health and wellbeing of women and babies. The review findings have highlighted areas within this period where strategies to inform policy and practice could be optimised to allow for better access to care and support for women in their journey to motherhood. Future pandemic preparedness strategies need to maximise face-to-face care, optimise communication channels to combat misinformation and anxiety, include a flexible approach to public health restrictions for women and their families by allowing formal and informal support networks to be readily available and accessible, and to ensure maternal mental health is a priority.

Availability of data and materials

All data generated or analysed during this study are included in this published article [and its supplementary information files]. Additional information is available from the corresponding author on reasonable request.

World Health Organization (WHO). WHO Coronavirus (COVID-19) Dashboard World Health Organization; 2021. Available from: https://covid19.who.int/.

Fisk M, Livingstone A, Pit SW. Telehealth in the Context of COVID-19: Changing Perspectives in Australia, the United Kingdom, and the United States. J Med Internet Res. 2020;22(6):e19264.

Article   PubMed   PubMed Central   Google Scholar  

Montagnoli C, Zanconato G, Ruggeri S, Cinelli G, Tozzi AE. Restructuring maternal services during the covid-19 pandemic: Early results of a scoping review for non-infected women. Midwifery. 2021;94:102916.

Article   PubMed   Google Scholar  

Zaigham M, Linden K, Sengpiel V, Mariani I, Valente EP, Covi B, et al. Large gaps in the quality of healthcare experienced by Swedish mothers during the COVID-19 pandemic: A cross-sectional study based on WHO standards. Women and Birth. 2022;35(6):619–27.

Coxon K, Turienzo CF, Kweekel L, Goodarzi B, Brigante L, Simon A, et al. The impact of the coronavirus (COVID-19) pandemic on maternity care in Europe. Midwifery. 2020;88:102779.

Javaid S, Barringer S, Compton SD, Kaselitz E, Muzik M, Moyer CA. The impact of COVID-19 on prenatal care in the United States: Qualitative analysis from a survey of 2519 pregnant women. Midwifery. 2021;98:102991.

Galle A, Semaan A, Huysmans E, Audet C, Asefa A, Delvaux T, et al. A double-edged sword—telemedicine for maternal care during COVID-19: findings from a global mixed-methods study of healthcare providers. BMJ Global Health. 2021;6(2): e004575.

Kotlar B, Gerson E, Petrillo S, Langer A, Tiemeier H. The impact of the COVID-19 pandemic on maternal and perinatal health: a scoping review. Reproductive Health. 2021;18(1):10.

Article   CAS   PubMed   PubMed Central   Google Scholar  

Meaney S, Leitao S, Olander EK, Pope J, Matvienko-Sikar K. The impact of COVID-19 on pregnant womens’ experiences and perceptions of antenatal maternity care, social support, and stress-reduction strategies. Women and Birth. 2021;35(3).

Allotey J, Stallings E, Bonet M, Yap M, Chatterjee S, Kew T, et al. Clinical manifestations, risk factors, and maternal and perinatal outcomes of coronavirus disease 2019 in pregnancy: living systematic review and meta-analysis. BMJ. 2020;370: m3320.

Villar J, Ariff S, Gunier RB, Thiruvengadam R, Rauch S, Kholin A, et al. Maternal and Neonatal Morbidity and Mortality Among Pregnant Women With and Without COVID-19 Infection: The INTERCOVID Multinational Cohort Study. JAMA Pediatrics. 2021;175(8). Available from: https://jamanetwork.com/journals/jamapediatrics/fullarticle/2779182 .

Basu A, Kim HH, Basaldua R, Choi KW, Charron L, Kelsall N, et al. A cross-national study of factors associated with women’s perinatal mental health and wellbeing during the COVID-19 pandemic. PloS one. 2021;16(4):e0249780-e.

Article   Google Scholar  

Yue C, Liu C, Wang J, Zhang M, Wu H, Li C, et al. Association between social support and anxiety among pregnant women in the third trimester during the coronavirus disease 2019 (COVID-19) epidemic in Qingdao, China: The mediating effect of risk perception. Int J Soc psychiatry. 2020;67(2):120–7.

Vazquez-Vazquez A, Dib S, Rougeaux E, Wells JC, Fewtrell MS. The impact of the Covid-19 lockdown on the experiences and feeding practices of new mothers in the UK: Preliminary data from the COVID-19 New Mum Study. Appetite. 2021;156: 104985.

Article   CAS   PubMed   Google Scholar  

Jacob CM, Briana DD, Di Renzo GC, Modi N, Bustreo F, Conti G, et al. Building resilient societies after COVID-19: the case for investing in maternal, neonatal, and child health. The Lancet Public Health. 2020;5(11):e624–7.

Anderson E, Brigden A, Davies A, Shepherd E, Ingram J. Pregnant women’s experiences of social distancing behavioural guidelines during the Covid-19 pandemic “lockdown” in the UK, a qualitative interview study. BMC Public Health. 2021;21(1):1202.

Sanders J, Blaylock R. “Anxious and traumatised”: Users’ experiences of maternity care in the UK during the COVID-19 pandemic. Midwifery. 2021;102:103069.

Cooper M, King R. Women’s experiences of maternity care during the height of the COVID-19 pandemic in Australia. researchnowflinderseduau [Internet]. 2020 [cited 2021 Aug 30]. Available from: https://researchnow.flinders.edu.au/en/publications/womens-experiences-of-maternity-care-during-the-height-of-the-cov .

Mortazavi F, Ghardashi F. The lived experiences of pregnant women during COVID-19 pandemic: a descriptive phenomenological study. BMC Pregnancy and Childbirth. 2021;21(1):193.

Chivers BR, Garad RM, Boyle JA, Skouteris H, Teede HJ, Harrison CL. Perinatal Distress During COVID-19: Thematic Analysis of an Online Parenting Forum. J Med Internet Res. 2020;22(9): e22002.

Schaming C, Wendland J. Postnatal mental health during the COVID-19 pandemic: Impact on mothers’ postnatal sense of security and on mother-to-infant bonding. Midwifery. 2023;117: 103557.

Bradfield Z, Wynter K, Hauck Y, Vasilevski V, Kuliukas L, Wilson AN, et al. Experiences of receiving and providing maternity care during the COVID-19 pandemic in Australia: A five-cohort cross-sectional comparison. PLOS ONE. 2021;16(3): e0248488.

Vasilevski V, Sweet L, Bradfield Z, Wilson AN, Hauck Y, Kuliukas L, et al. Receiving maternity care during the COVID-19 pandemic: Experiences of women’s partners and support persons. Women and Birth. 2021;35(3).

Lalor JG, Sheaf G, Mulligan A, Ohaja M, Clive A, Murphy-Tighe S, et al. Parental experiences with changes in maternity care during the Covid-19 pandemic: A mixed-studies systematic review. Women and Birth. 2023;36(2):e203–12.

Almeida M, Shrestha AD, Stojanac D, Miller LJ. The impact of the COVID-19 pandemic on women’s mental health. Archives of Women’s Mental Health. 2020;23(6):741–8.

Flaherty SJ, Delaney H, Matvienko-Sikar K, Smith V. Maternity care during COVID-19: a qualitative evidence synthesis of women’s and maternity care providers’ views and experiences. BMC Pregnancy Childbirth. 2022;22(1):438.

Al-Mutawtah M, Campbell E, Kubis H-P, Erjavec M. Women’s experiences of social support during pregnancy: a qualitative systematic review. BMC Pregnancy and Childbirth. 2023;23(1):782.

Zheng X, Zhang J, Ye X, Lin X, Liu H, Qin Z, et al. Navigating through motherhood in pregnancy and postpartum periods during the COVID-19 pandemic: A systematic review and qualitative meta-synthesis. J Nurs Manag. 2022;30(8):3958–71.

Noyes J BA, Cargo M, Flemming K, Harden A, Harris J, Garside R, Hannes K, Pantoja T, Thomas J,. Chapter 21: Qualitative evidence. . 2022. In: Cochrane Handbook for Systematic Reviews of Interventions version 63 (updated February 2022) [Internet]. Cochrane. Available from: http://www.training.cochrane.org/handbook .

Flemming K, Noyes J. Qualitative Evidence Synthesis: Where Are We at? International Journal of Qualitative Methods. 2021;20:1609406921993276.

Popay J, Rogers A, Williams G. Rationale and Standards for the Systematic Review of Qualitative Literature in Health Services Research. Qualitative Health Research. 1998;8(3):341–51.

Flemming K, Booth A, Garside R, Tunçalp Ö, Noyes J. Qualitative evidence synthesis for complex interventions and guideline development: clarification of the purpose, designs and relevant methods. BMJ Global Health. 2019;4(Suppl 1): e000882.

Tong A, Flemming K, McInnes E, Oliver S, Craig J. Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ. BMC Medical Research Methodology. 2012;12(1):181.

Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ. 2021;372: n71.

World Health Organization (WHO). WHO Technical Consultation on Postpartum and Postnatal Care. Geneva: WHO; 2010.

Google Scholar  

Organisation for Economic Co-operation and Development. List of OECD Member countries - Ratification of the Convention on the OECD: OECD; 2023. Available from: https://www.oecd.org/about/document/ratification-oecd-convention.htm .

World Population Review. Human Development Index (HDI) by Country 2022-2023. Available from: https://worldpopulationreview.com/country-rankings/hdi-by-country .

Greyling T, Rossouw S, Adhikari T. The good, the bad and the ugly of lockdowns during Covid-19. PLOS ONE. 2021;16(1): e0245546.

Bu F, Steptoe A, Fancourt D. Loneliness during a strict lockdown: Trajectories and predictors during the COVID-19 pandemic in 38,217 United Kingdom adults. Social Science & Medicine. 2020;265: 113521.

Coronavirus Pandemic (COVID-19). 2020 Available from: https://ourworldindata.org/coronavirus .

Covidence. Covidence. Available from: https://www.covidence.org/ .

Bohren MA. Qualitative evidence synthesis & GRADE-CERQual. University of Melbourne. Cochrane Australia. 2021.

Downe S, Finlayson KW, Lawrie TA, Lewin SA, Glenton C, Rosenbaum S, et al. Qualitative Evidence Synthesis (QES) for Guidelines: Paper 1 – Using qualitative evidence synthesis to inform guideline scope and develop qualitative findings statements. Health Research Policy and Systems. 2019;17(1):76.

Benoot C, Hannes K, Bilsen J. The use of purposeful sampling in a qualitative evidence synthesis: A worked example on sexual adjustment to a cancer trajectory. BMC Medical Research Methodology. 2016;16(1):21.

Ames H, Glenton C, Lewin S. Purposive sampling in a qualitative evidence synthesis: a worked example from a synthesis on parental perceptions of vaccination communication. BMC Medical Research Methodology. 2019;19(1):26.

Critical Appraisal Skills Program. CASP Qualitative Studies Checklist. 2018. Available from: https://casp-uk.net/casp-tools-checklists/ .

Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Research in Psychology. 2006;3(2):77–101.

Lumivero. NVivo (Version 13,2020), QSR International Pty Ltd; 2020. Available from: www.lumivero.com .

Atmuri K, Sarkar M, Obudu E, et al. Perspectives of pregnant women during the COVID-19 pandemic: A qualitative study. Women and Birth. 2022;35(3):280–8.

Aydin R, Aktaş S. An investigation of women’s pregnancy experiences during the COVID-19 pandemic: A qualitative study. Int J Clin Pract. 2021;75(9).

Brown A, Shenker N. Experiences of breastfeeding during COVID-19: Lessons for future practical and emotional support. Maternal & Child Nutrition. 2021;17(1): e13088.

Charvat E, Horstman HK, Jordan E, Leverenz A, Okafor B. Navigating Pregnancy during the COVID-19 Pandemic: The Role of Social Support in Communicated Narrative Sense-making. Journal of Family Communication. 2021;21(3):167–85.

Costa B, McWilliams D, Blighe S, Hudson N, Hotton M, Swan MC, et al. Isolation, Uncertainty and Treatment Delays: Parents’ Experiences of Having a Baby with Cleft Lip/Palate During the Covid-19 Pandemic. Cleft Palate Craniofac J. 2021;105566562110550.

Davis JA, Gibson LY, Bear NL, Finlay-Jones AL, Ohan JL, Silva DT, et al. Can Positive Mindsets Be Protective Against Stress and Isolation Experienced during the COVID-19 Pandemic? A Mixed Methods Approach to Understanding Emotional Health and Wellbeing Needs of Perinatal Women. Int J Environ Res Public Health. 2021;18(13):6958.

DeJoy SB, Mandel D, McFadden N, Petrecca L. Concerns of Women Choosing Community Birth During the COVID-19 Pandemic: A Qualitative Study. Journal of Midwifery & Women’s Health. 2021;66(5):624–30.

Dove-Medows E, Davis J, McCracken L, et al. A Mixed-Methods Study of Experiences During Pregnancy Among Black Women During the COVID-19 Pandemic. J Perinat Neonatal Nurs. 2022;36(2):161–72.

Farrell RM, Pierce M, Collart C, Craighead C, Coleridge M, Chien EK, et al. The impact of the emergence of COVID-19 on women's prenatal genetic testing decisions. Prenat Diagn. 2021;41(8):1009–17.

Fumagalli S, Omaghi S, Borrelli S, et al. The experiences of childbearing women who tested positive to COVID-19 during the pandemic in northern Italy. Women and Birth. 2022;35(3):242–53.

Green SM, Furtado M, Inness BE, Frey BN, McCabe RE. Characterizing Worry Content and Impact in Pregnant and Postpartum Women with Anxiety Disorders During COVID-19. Clin Psychol Psychother. 2022;29(3):1144–57.

Harrison S, Alderdice F, McLeish J, et al. You and your baby: a national survey of health and care during the 2020 Covid-19 pandemic. Oxford: National Perinatal Epidemiology Unit, University of Oxford; 2021.

Jackson L, De Pascalis L, Harrold JA, Fallon V, Silverio SA. Postpartum women's experiences of social and healthcare professional support during the COVID-19 pandemic: A recurrent cross-sectional thematic analysis. Women and Birth. 2022;35(5):511–20.

Jackson L, De Pascalis L, Harrold JA, Fallon V, Silverio SA. Postpartum women’s psychological experiences during the COVID-19 pandemic: a modified recurrent cross-sectional thematic analysis. BMC Pregnancy and Childbirth. 2021;21(1):625.

John JR, Curry G, Cunningham-Burley S. Exploring ethnic minority women’s experiences of maternity care during the SARS-CoV-2 pandemic: a qualitative study. BMJ Open. 2021;11(9): e050666.

Joy P, Aston M, Price S, Sim M, Ollivier R, Benoit B, et al. Blessings and Curses: Exploring the Experiences of New Mothers during the COVID-19 Pandemic. Nursing Reports. 2020;10(2):207–19.

Keating NE, Dempsey B, Corcoran S, McAuliffe FM, Lalor J, Higgins MF. Women’s experience of pregnancy and birth during the COVID-19 pandemic: a qualitative study. Ir J Med Sci. 2022;191(5):2177–84.

Kolker S, Biringer A, Bytautas J, Blumenfeld H, Kukan S, Carroll JC. Pregnant during the COVID-19 pandemic: an exploration of patients’ lived experiences. BMC Pregnancy and Childbirth. 2021;21(1):851.

Kynø NM, Fugelseth D, Knudsen LMM, Tandberg BS. Starting parenting in isolation a qualitative user-initiated study of parents’ experiences with hospitalization in Neonatal Intensive Care units during the COVID-19 pandemic. PloS one. 2021;16(10): e0258358.

Linden K, Domgren N, Zaigham M, Sengpiel V, Andersson ME, Wessberg A. Being in the shadow of the unknown — Swedish women's lived experiences of pregnancy during the COVID-19 pandemic, a phenomenological study. Women and Birth. 2022;35(5):440–6.

Mizrak Sahin B, Kabakci EN. The experiences of pregnant women during the COVID-19 pandemic in Turkey: A qualitative study. Women and birth. 2021;34(2):162–9.

Ollivier R, Aston DM, Price DS, Sim DM, Benoit DB, Joy DP, et al. Mental Health & Parental Concerns during COVID-19: The Experiences of New Mothers Amidst Social Isolation. Midwifery. 2021;94: 102902.

Panda S, O’Malley D, Barry P, Vallejo N, Smith V. Women’s views and experiences of maternity care during COVID-19 in Ireland: A qualitative descriptive study. Midwifery. 2021;103: 103092.

Rhodes A, Kheireddine S, Smith AD. Experiences, Attitudes, and Needs of Users of a Pregnancy and Parenting App (Baby Buddy) During the COVID-19 Pandemic: Mixed Methods Study. JMIR mHealth and uHealth. 2020;8(12): e23157.

Rice K, Williams S. Women’s postpartum experiences in Canada during the COVID-19 pandemic: a qualitative study. CMAJ Open. 2021;9(2):E556–62.

Rice K, Williams S. Making good care essential: The impact of increased obstetric interventions and decreased services during the COVID-19 pandemic. Women and Birth. 2022;35(5):484–92.

Riley V, Ellis N, Mackay L, Taylor J. The impact of COVID-19 restrictions on women’s pregnancy and postpartum experience in England: A qualitative exploration. Midwifery. 2021;101: 103061.

Saleh L, Canclini S, Greer K, Mathison C, Combs SM, Dickerson B, et al. Mothers’ Experiences of Pregnancy, Labor and Birth, and Postpartum During COVID-19 in the United States: Preliminary Results of a Mixed-Methods Study. The Journal of Perinatal & Neonatal Nursing. 2022;36(1):55–67.

Silverio SA, De Backer K, Easter A, von Dadelszen P, Magee LA, Sandall J. Women’s experiences of maternity service reconfiguration during the COVID-19 pandemic: A qualitative investigation. Midwifery. 2021;102: 103116.

Snyder K, Worlton G. Social Support During COVID-19: Perspectives of Breastfeeding Mothers. Breastfeed Med. 2021;16(1):39–45.

Spatz DL, Froh EB. Birth and Breastfeeding in the Hospital Setting during the COVID-19 Pandemic. MCN The American Journal of Maternal Child Nursing. 2021;46(1):30–5.

Stirling Cameron E, Ramos H, Aston M, Kuri M, Jackson L. “COVID affected us all:” the birth and postnatal health experiences of resettled Syrian refugee women during COVID-19 in Canada. Reproductive Health. 2021;18(1):256.

Sweet L, Bradfield Z, Vasilevski V, Wynter K, Hauck Y, Kuliukas L, et al. Becoming a mother in the ‘new’ social world in Australia during the first wave of the COVID-19 pandemic. Midwifery. 2021;98: 102996.

Sweet L, Wilson AN, Bradfield Z, Hauck Y, Kuliukas L, Homer CSE, et al. Childbearing women’s experiences of the maternity care system in Australia during the first wave of the COVID-19 pandemic. Women and Birth. 2022;35(3):223–31.

Lewin S, Booth A, Glenton C, Munthe-Kaas H, Rashidian A, Wainwright M, et al. Applying GRADE-CERQual to qualitative evidence synthesis findings: introduction to the series. Implementation Science. 2018;13(1):2.

iSoQ: Grade-CERqual [Internet]. 2023 [cited 2022]. Available from: https://www.cerqual.org/isoq/ .

Ataman H, Tuncer M. The effect of COVID-19 fear on prenatal distress and childbirth preference in primipara. Rev Assoc Med Bras. 2023;69(5):e20221302.

Preis H, Mahaffey B, Heiselman C, Lobel M. Vulnerability and resilience to pandemic-related stress among US women pregnant at the start of the COVID-19 pandemic. Social science & medicine. 2020;266: 113348.

Boekhorst MG, Muskens L, Hulsbosch LP, Van Deun K, Bergink V, Pop VJ, et al. The COVID-19 outbreak increases maternal stress during pregnancy, but not the risk for postpartum depression. Arch Womens Ment Health. 2021;24(6):1037–43.

Reingold RB, Barbosa I, Mishori R. Respectful maternity care in the context of COVID-19: A human rights perspective. Int J Gynaecol Obstet. 2020;151(3):319–21.

Tunçalp Ӧ, Pena-Rosas JP, Lawrie T, Bucagu M, Oladapo OT, Portela A, Metin Gülmezoglu A. WHO recommendations on antenatal care for a positive pregnancy experience-going beyond survival. BJOG. 2017;124(6):860–2.

World Heath Organization (WHO) Standards for improving quality of maternal and newborn care in health facilities [Internet]. Available from: https://www.who.int/publications-detail-redirect/9789241511216 .

Khaw SML, Homer CSE, Dearnley RE, O’Rourke K, Akter S, Bohren MA. A qualitative study on community-based doulas’ roles in providing culturally-responsive care to migrant women in Australia. Women and Birth. 2023;36(5):e527–35.

Essén B, Eriksson L. Paradoxes in the cultural doula concept for migrant women: Implications for gender-inclusive care versus migrant-friendly maternity care. Midwifery. 2023;126: 103805.

Asefa A. Unveiling respectful maternity care as a way to address global inequities in maternal health. BMJ Glob Health. 2021;6(1):e003559.

Murray K, Nebeker C, Carpendale E. Responsibilities for ensuring inclusion and representation in research: A systems perspective to advance ethical practices. Australian & New Zealand Journal of Psychiatry. 2019;53(9):835–8.

Rini C, Schetter CD, Hobel CJ, Glynn LM, Sandman CA. Effective social support: Antecedents and consequences of partner support during pregnancy. Personal Relationships. 2006;13(2):207–29.

Racine N, Plamondon A, Hentges R, Tough S, Madigan S. Dynamic and bidirectional associations between maternal stress, anxiety, and social support: The critical role of partner and family support. Journal of Affective Disorders. 2019;252:19–24.

Kroelinger CD, Oths KS. Partner Support and Pregnancy Wantedness. Birth. 2000;27(2):112–9.

Wells MB, Svahn J, Svedlind K, Andersson E. A qualitative study of Swedish fathers’ experiences of becoming a father during the COVID-19 pandemic. Eur J Midwifery. 2022;6:15.

Lista G, Bresesti I. Fatherhood during the COVID-19 pandemic: an unexpected turnaround. Early Hum Dev. 2020;144: 105048.

Menzel A. The coronavirus pandemic: exploring expectant fathers’ experiences. Journal for Cultural Research. 2022;26(1):83–101.

Digby R, Manias E, Haines KJ, Orosz J, Ihle J, Bucknall TK. Family experiences and perceptions of intensive care unit care and communication during the COVID-19 pandemic. Australian Critical Care. 2023;36(3):350–60.

Roberto A, Sellon A, Cherry ST, Hunter-Jones J, Winslow H. Impact of spirituality on resilience and coping during the COVID-19 crisis: A mixed-method approach investigating the impact on women. Health Care Women Int. 2020;41(11–12):1313–34.

Kinser PA, Jallo N, Amstadter AB, Thacker LR, Jones E, Moyer S, et al. Depression, Anxiety, Resilience, and Coping: The Experience of Pregnant and New Mothers During the First Few Months of the COVID-19 Pandemic. Journal of Women’s Health. 2021;30(5):654–64.

Barbosa-Leiker C, Smith CL, Crespi EJ, Brooks O, Burduli E, Ranjo S, et al. Stressors, coping, and resources needed during the COVID-19 pandemic in a sample of perinatal women. BMC Pregnancy and Childbirth. 2021;21(1):171.

Hui L, Marzan MB, Potenza S, Rolnik DL, Pritchard N, Said JM, et al. Increase in preterm stillbirths in association with reduction in iatrogenic preterm births during COVID-19 lockdown in Australia: a multicenter cohort study. Am J Obstet Gynecol. 2022;227(3):491.e1–17.

De Mario C, Leonardo V, Arianna P. Increase of stillbirth and decrease of late preterm infants during the COVID-19 pandemic lockdown. Arch Dis Child Fetal Neonatal Ed. 2021;106(4):456.

Calvert C, Brockway M, Zoega H, Miller JE, Been JV, Amegah AK, et al. Changes in preterm birth and stillbirth during COVID-19 lockdowns in 26 countries. Nature Human Behaviour. 2023;7(4):529–44.

Fahy K. What is woman-centred care and why does it matter? Women and Birth. 2012;25(4):149–51.

Leap N. Woman-centred or women-centred care: does it matter? British Journal of Midwifery. 2009;17(1):12–6.

Watkins V, Nagle C, Kent B, Street M, Hutchinson AM. Labouring Together: Women’s experiences of “Getting the care that I want and need” in maternity care. Midwifery. 2022;113: 103420.

Macpherson I, Roqué-Sánchez MV, Legget BNFO, Fuertes F, Segarra I. A systematic review of the relationship factor between women and health professionals within the multivariant analysis of maternal satisfaction. Midwifery. 2016;41:68–78.

Vermeulen J, Bilsen J, Buyl R, De Smedt D, Gucciardo L, Faron G, et al. Women’s experiences with being pregnant and becoming a new mother during the COVID-19 pandemic. Sex Reprod Healthc. 2022;32: 100728.

Homer CSE. Models of maternity care: evidence for midwifery continuity of care. Medical Journal of Australia. 2016;205(8):370–4.

Davison C. Woman-centred care. British Journal of Midwifery. 2021;29(5):246–8.

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The primary author is funded by Deakin University Postgraduate Research Scholarship as a PhD Candidate. AB is supported by the Australian Government Research Training Program, CSEH is supported by the Australian National Health and Medical Research Council Leadership Investigator Grant, and JPV is supported by the Australian National Health and Medical Research Council Emerging Leadership Investigator Grant. The funding bodies had no role in the conceptualisation of the study design and data collection, data analysis, interpretation and writing of the manuscript.

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Tan, A., Blair, A., Homer, C.S. et al. Pregnant and postpartum women’s experiences of the indirect impacts of the COVID-19 pandemic in high-income countries: a qualitative evidence synthesis. BMC Pregnancy Childbirth 24 , 262 (2024). https://doi.org/10.1186/s12884-024-06439-6

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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  

BMC Palliative Care volume  23 , Article number:  98 ( 2024 ) Cite this article

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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.

Peer Review reports

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

World Health Organization. Newsroom Palliative Care Fact Sheet. 2020. https://www.who.int/news-room/fact-sheets/detail/palliative-care .

World Health Assembly 67. Strengthening of palliative care as a component of comprehensive care throughout the life course [Internet]. 2014. https://apps.who.int/iris/handle/10665/162863 .

McIlfatrick S, Slater P, Beck E, Bamidele O, McCloskey S, Carr K, et al. Examining public knowledge, attitudes and perceptions towards palliative care: a mixed method sequential study. BMC Palliat Care. 2021;20(1):44.

Article   PubMed   PubMed Central   Google Scholar  

Brinkman-Stoppelenburg A, Rietjens JA, Van Der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliat Med. 2014;28(8):1000–25.

Article   PubMed   Google Scholar  

Grant MS, Back AL, Dettmar NS. Public perceptions of Advance Care Planning, Palliative Care, and Hospice: a scoping review. J Palliat Med. 2021;24(1):46–52.

McIlfatrick S, Slater P, Bamidele O, Muldrew D, Beck E, Hasson F. ‘ It’s almost superstition: If I don’t think about it, it won’t happen ’. Public knowledge and attitudes towards advance care planning: A sequential mixed methods study. Palliat Med. 2021;35(7):1356–65.

Canny A, Mason B, Boyd K. Public perceptions of advance care planning (ACP) from an international perspective: a scoping review. BMC Palliat Care. 2023;22(1):107.

Mills J, Abel J, Kellehear A, Patel M. Access to palliative care: the primacy of public health partnerships and community participation. Lancet Public Health. 2021;6(11):e791–2.

Tobin J, Rogers A, Winterburn I, Tullie S, Kalyanasundaram A, Kuhn I, et al. Hospice care access inequalities: a systematic review and narrative synthesis. BMJ Support Palliat Care. 2022;12(2):142–51.

Sallnow L, Smith R, Ahmedzai SH, Bhadelia A, Chamberlain C, Cong Y, et al. Report of the Lancet Commission on the value of death: bringing death back into life. Lancet. 2022;399(10327):837–84.

Kellehear A. Compassionate communities: end-of-life care as everyone’s responsibility. QJM. 2013;106(12):1071–5.

Last Aid. Last Aid [Internet]. 2023. https://www.letztehilfe.info/project/ .

Sawyer JM, Higgs P, Porter JDH, Sampson EL. New public health approaches to palliative care, a brave new horizon or an impractical ideal? An integrative literature review with thematic synthesis. Palliat Care Soc Pract. 2021;15:263235242110329.

Article   Google Scholar  

Li WW, Chhabra J, Singh S. Palliative care education and its effectiveness: a systematic review. Public Health. 2021;194:96–108.

Article   CAS   PubMed   Google Scholar  

Seymour J. The Impact of Public Health Awareness Campaigns on the awareness and quality of Palliative Care. J Palliat Med. 2018;21(S1):S–30.

Seymour JE. Revisiting medicalisation and ‘natural’ death. Soc Sci Med. 1999;49(5):691–704.

McIlfatrick S, Slater PF, Beck E, Hasson F, Black R. NI Life and Times Survey: palliative care and Advance Care Planning. Ulster University; 2023.

Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–57.

Braun V, Clarke V. Thematic analysis: a practical guide. 1st ed. SAGE; 2022. p. 338.

McLeroy KR, Bibeau D, Steckler A, Glanz K. An Ecological Perspective on Health Promotion Programs. Health Educ Q. 1988;15(4):351–77.

Bronfenbrenner U. Toward an experimental ecology of human development. Am Psychol. 1977;32(7):513–31.

Sutton S. Determinants of Health-Related Behaviours: Theoretical and Methodological Issues. In: The SAGE Handbook of Health Psychology [Internet]. 1 Oliver’s Yard, 55 City Road, London EC1Y 1SP United Kingdom: SAGE Publications Ltd; 2008 [cited 2023 Jun 21]. pp. 94–126. https://sk.sagepub.com/reference/hdbk_sagehealthpsych/n4.xml .

Tripken JL, Elrod C, Bills S. Factors influencing Advance Care Planning among older adults in two socioeconomically diverse Living communities. Am J Hosp Palliat Med. 2018;35(1):69–74.

Chen Y, Zhang R, Lou Y, Li W, Yang H. Facilitators and barriers to the delivery of palliative care to patients with Parkinson’s disease: a qualitative study of the perceptions and experiences of stakeholders using the socio-ecological model. BMC Health Serv Res. 2023;23(1):215.

Huang Y, Yates P, Thorberg FA, Wu C (Jo), editors. Influence of social interactions, professional supports and fear of death on adults’ preferences for life-sustaining treatments and palliative care. Int J Nurs Pract [Internet]. 2022 Aug [cited 2023 Jun 21];28(4). https://onlinelibrary.wiley.com/doi/ https://doi.org/10.1111/ijn.12940 .

Korstjens I, Moser A, Series. Practical guidance to qualitative research. Part 4: trustworthiness and publishing. Eur J Gen Pract. 2018;24(1):120–4.

Data Protection Act. (2018) [Internet]. https://www.legislation.gov.uk/ukpga/2018/12/contents/enacted .

Liu M, Cardenas V, Zhu Y, Enguidanos S. YouTube Videos as a Source of Palliative Care Education: a review. J Palliat Med. 2019;22(12):1568–73.

Buonocore S, Sussman-Skalka C, Project, insights: An evaluation of a community vision education project for older adults. Educ Gerontol. 2002;28(4):289–99.

McIlfatrick S, Hasson F, Slater PF, Beck E, Hanna-Trainor L, Muldrew D. Where are we now? - Examining public knowedge and attitudes towards palliative care and advance care planning in Northern Ireland [Internet]. 2021. https://www.ulster.ac.uk/__data/assets/pdf_file/0012/819678/Where-are-we-now-Examining-public-knowledge-and-attitudes-towards-palliative-care-and-advance-care-planning-in-NI.pdf .

YouGov. Daily question. Do you think the subject of death, and issues around dying, should or should not be taught in schools? https://yougov.co.uk/topics/philosophy/survey-results/daily/2021/03/16/d5536/2 .

Li Z, Beck ER, McIlfatrick S, Hasson F. Chinese Diaspora communities’ knowledge of and Engagement with Advance Care Planning: a systematic integrative review. J Palliat Care. 2023;38(3):381–97.

Balcazar FE, Suarez-Balcazar Y, Taylor-Ritzler T. Cultural competence: development of a conceptual framework. Disabil Rehabil. 2009;31(14):1153–60.

Truong M, Paradies Y, Priest N. Interventions to improve cultural competency in healthcare: a systematic review of reviews. BMC Health Serv Res. 2014;14(1):99.

Cain CL, Surbone A, Elk R, Kagawa-Singer M. Culture and Palliative Care: preferences, communication, meaning, and mutual decision making. J Pain Symptom Manage. 2018;55(5):1408–19.

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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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Ethical approval was granted from the Ulster University Nursing and Health Sciences Ethics Filter Committee (FCNUR-22-063 Sept 2022). 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 was confirmed. All data was kept in accordance with the Data protection act (2018).

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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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Active involvement in scientific research of persons living with dementia and long-term care users: a systematic review of existing methods with a specific focus on good practices, facilitators and barriers of involvement

• Janneke M. Groothuijse 1 , 2 ,
• Lisa S. van Tol 1 , 2 ,
• C. C. M. (Toos) Hoeksel-van Leeuwen 1 , 2 ,
• Johannes J. M. van Delden 3 ,
• Monique A. A. Caljouw 1 , 2 &
• Wilco P. Achterberg 1 , 2  

BMC Geriatrics volume  24 , Article number:  324 ( 2024 ) Cite this article

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Metrics details

Active involvement of persons living with dementia (PLWD) and long-term care (LTC) users in research is essential but less developed compared to other patient groups. However, their involvement in research is not only important but also feasible. This study aims to provide an overview of methods, facilitators, and barriers for involving PLWD and LTC users in scientific research.

A systematic literature search across 12 databases in December 2020 identified studies involving PLWD, LTC users, or their carers beyond research subjects and describing methods or models for involvement. Qualitative descriptions of involvement methods underwent a risk of bias assessment using the Critical Appraisal Skills Programme (CASP) Qualitative Checklist 2018. A data collection sheet in Microsoft Excel and thematic analysis were used to synthesize the results.

The eighteen included studies delineated five core involvement methods spanning all research phases: advisory groups, formal and informal research team meetings, action groups, workshops, and co-conducting interviews. Additionally, two co-research models with PLWD and carers were found, while only two studies detailed LTC user involvement methods. Four distinct involvement roles were identified: consulting and advisory roles, co-analysts, co-researchers, and partners. The review also addressed barriers, facilitators, and good practices in the preparation, execution, and translation phases of research, emphasizing the importance of diversity, bias reduction, and resource allocation. Trust-building, clear roles, ongoing training, and inclusive support were highlighted.

Conclusions

Planning enough time for active involvement is important to ensure that researchers have time to build a trusting relationship and meet personal needs and preferences of PLWD, LTC users and carers. Researchers are advised not to presume the meaning of burden and to avoid a deficit perspective. A flexible or emergent design could aid involved persons’ ownership of the research process.

Trial registration

Prospero 2021: CRD42021253736.

Peer Review reports

In research characterized by active involvement, the target group plays a pivotal role in shaping research decisions and outcomes, directly impacting them. Involving patients in health research offers significant benefits [ 1 , 2 ]: it enhances participant recruitment [ 2 ], refines research questions [ 2 ], aligns study results with the target population [ 1 , 2 ], and promotes effective implementation of findings [ 1 ]. Active involvement of patients has also benefits for themselves, namely an enhanced understanding of research, building relationships, personal development, improved health and wellbeing, and enjoyment and satisfaction [ 3 , 4 ]. It gives them a sense of purpose and satisfaction through their tangible impact.

However, for long-term care (LTC) users and persons living with dementia (PLWD) active involvement in research is less developed than for other patient groups [ 5 , 6 ]. PLWD and LTC users share similar care needs, encompassing assistance with activities of daily living (ADLs), medication management, medical condition monitoring, and emotional support. Furthermore, a substantial portion of LTC users comprises individuals living with dementia [ 7 ]. Additionally, statistical data from the United States reveals that one in four older individuals is likely to reside in long-term care (LTC) facilities [ 8 ], and approximately forty to eighty percent of LTC residents in the United States, Japan, Australia, and England experience dementia or severe memory problems [ 7 , 9 ].

Due to these considerations, we have chosen to combine the target audiences of PLWD and LTC users in our systematic review. However, it's important to note that while there are potential advantages to combining these target groups, there may also be challenges. PLWD and LTC users may have varying needs, preferences, and experiences, including differences in care requirements driven by individual factors like the stage of dementia, coexisting conditions, and personal preferences. Therefore, it's imperative to conduct comprehensive research and involve these communities to ensure that involvement approaches are not only inclusive but also tailored to meet their specific requirements.

Given our ageing population and the intricate health challenges faced by PLWD and LTC users, including their vulnerability and shorter life expectancy in old age, it's crucial to establish effective research involvement methods. These individuals have unique needs and preferences that require attention. They possess a voice, and as researchers, it is our responsibility to not only listen to them but also actively involve them in the research process. Consequently, it is essential to identify means through which the voices of PLWD and LTC users can be effectively heard and ensure that their input is incorporated into research.

Fortunately, publication of studies on involvement of PLWD and LTC users in scientific research is slowly increasing [ 5 , 9 , 10 , 11 ]. A few reviews have described how PLWD and LTC users were involved [ 5 , 9 , 10 ]. However, with the increasing attention for involvement, the understanding of when involvement is meaningful grows and stricter requirements can be imposed to increase the quality of active involvement [ 12 , 13 ]. To our knowledge there is no up to date overview of involvement methods used with either or both PLWD and LTC users. Such an overview of involvement methods for PWLD and LTC users would provide a valuable, comprehensive resource encompassing various stages of the research cycle and different aspects of involvement. It would equip researchers with the necessary guidance to navigate the complexities of involving PLWD and LTC users in their research projects.

Recognizing the need to enhance the involvement of PLWD and LTC users in scientific research, this systematic review aims to construct a comprehensive overview of the multiple methodologies employed in previous studies, along with an examination of the facilitators and barriers of involvement. Our overarching goal is to promote inclusive and effective involvement practices within the research community. To achieve this objective, this review will address the following questions: (1) What kind of methods are used and how are these methods implemented to facilitate involvement of PLWD and LTC users in scientific research? (2) What are the facilitators and barriers encountered in previous research projects involving PLWD and LTC users?

Protocol and registration

The search and analysis methods were specified in advance in a protocol. The protocol is registered and published in the PROSPERO database with registration number CRD42021253736. The search and analysis methods are also described below more briefly.

Information sources, search strategy, and eligibility criteria

In preparation of the systematic literature search, key articles and reviews about involvement of PLWD and LTC users in research were screened to identify search terms. In addition, Thesaurus and MeSH terms were used to broaden the search. The search was conducted on December 10, 2020, across multiple databases: PubMed, Medline, Embase, Emcare, Web of Science, Cochrane Library, PsycINFO, Academic Search Premier, JSTOR, Social Services Abstracts, Sociological Abstracts, Psychology and Behavioral Sciences Collection. The search terms were entered in "phrases". The search strategy included synonymous and related terms for dementia, LTC user, involvement, research, method, and long-term care. The full search strategy is provided in supplement 1 .

After conducting the search, records underwent initial screening based on titles and abstracts. Selected reports were retrieved for full-text assessment, and studies were evaluated for eligibility based on several criteria. However, no restriction was made regarding publication date. First, to be included studies had to be written in English, German, French, or Dutch. Second, we only included original research studies. Third, studies were excluded when the target group or their representatives were not involved in research, but only participated as research subjects. Fourth, studies were excluded when not describing involvement in research. Therefore, studies concerning involvement in care, policy, or self-help groups were excluded. Fifth, the focus of this systematic review is on methods. Therefore, studies with a main focus on the results, evaluation, ethical issues, and impact of involvement in research were excluded. Additionally, we have not set specific inclusion or exclusion criteria based on study design since our primary focus is on involvement methodologies, regardless of the chosen research design. Sixth, the included studies had to concern the involvement in research of PLWD or adult LTC users, whether living in the community or in institutional settings, as well as informal caregivers or other representatives of these groups who may represent PLWD and LTC users facing limitations. Studies that involved LTC users that were children or ‘young adults’, or their representatives, were excluded. Studies were also excluded if they involved mental healthcare users if it remained unclear if the care that they received entailed more than only treatment from mental healthcare providers, but for example also assistance with ADL.

Terminology

For readability purposes, we use the abbreviation PLWD to refer to persons diagnosed with dementia, and we use the abbreviation LTC users to refer to persons receiving long-term care, at home or as residents living in nursing homes or other residential facilities. We use the term carers to refer to informal caregivers and other representatives of either PLWD or LTC users. As clear and consistent definitions regarding participatory research remains elusive [ 14 , 15 ], we formulated a broad working definition of involvement in research so as not to exclude any approach to participatory research. We defined involvement in research as “research carried out ‘with’ or ‘by’ the target group” [ 16 ], where the target group or their representatives take part in the governance or conduct of research and have some degree of ownership of the research [ 12 ]. It concerns involvement in research in which lived experienced experts work alongside research teams. We use the terms participation and participants, to refer to people being part of the research as study subjects.

Selection process, data-collection process, and data items

Titles and abstracts were independently screened by the first and second author (JG and LT). Only the studies that both reviewers agreed and met the inclusion criteria were included in the full-text screening process. Any uncertainty about whether the studies truly described a model or approach for involvement, was resolved by a quick screening of the full-text paper. The full-text screening process was then conducted according to the same procedure by JG and LT. Any disagreement was resolved by discussion until consensus was reached. If no agreement could be reached, a third researcher (MC) was consulted. References of the included studies were screened for any missing papers.

The following information was collected on a data collection sheet in Microsoft Excel: year and country of publication, topic, research aim, study design, living situation of involved persons (at home or institutionalized), description of involved persons, study participants (study subjects), theories and methods used, type/role(s) of involvement, research phase(s), recruitment, consent approach, study setting, structure of participatory activities, training, resources, facilitators, barriers, ethics, benefits, impact, and definition of involvement used.

JG independently extracted data from all included studies, the involved co-researcher (THL) independently extracted data from two studies, the second author (LT) from five. Differences in the analysis were discussed with the co-researcher (THL) and second author (LT) until consensus was reached. As only minor differences emerged, limited to the facilitator and barrier categories, data from the remaining studies was extracted by JG.

Risk of bias assessment

Every research article identified through the systematic review exclusively comprised qualitative descriptions of the involvement method(s) employed. Consequently, all articles underwent evaluation using the Critical Appraisal Skills Programme (CASP) Qualitative Checklist 2018 [ 17 ], as opposed to the checklists intended for quantitative or mixed methods research. All included studies were independently assessed on quality by two reviewers (JG,LT) and any disagreement was resolved by discussion until consensus was reached. The CASP Qualitative Checklist consists of ten questions. The checklist does not provide suggestions on scoring, the first author designed a scoring system: zero points if no description was provided (‘no’), one point if a minimal description was provided (‘can’t tell’) and two points when the question was answered sufficiently (‘yes’). The second question of the checklist, “is a qualitative methodology appropriate”, was not applicable to the aims (i.e., to describe involvement) of the included studies and was therefore excluded. The tenth question was translated into a ‘yes’, ‘can’t tell’, or ‘no’ score to fit the scoring system. A maximum of eighteen points could be assigned.

Synthesis methods

Tables were used to summarize the findings and to acquire an overview of (1) the kinds of methods used to enable involvement of PLWD, LTC users, or carers in scientific research, and (2) the facilitators and barriers for involving this target group in scientific research. As to the first research aim, the headings of the first two tables are based on the Guidance for Reporting Involvement of Patients and the Public, long form version 2 (GRIPP2-LF) [ 18 ]. Because our systematic review focusses on methods, only the topics belonging to sections two, three, and four were included. Following Shippee et al., three main research phases were distinguished: preparation, execution, and translation [ 19 ]. Furthermore, the following fields were added to the GRIPP2-LF: First author, year of publication, country of study, setting of involvement, frequency of meetings, and a summary description of activities.

Concerning the second research aim, the extracted facilitators, barriers, and good practices were imported per study in ATLAS.ti for qualitative data analysis. Following the method for thematic synthesis of qualitative studies in systematic reviews [ 20 ], all imported barriers, facilitators and good practices were inductively coded staying 'close' to the results of the original studies, which resulted in 50 initial codes. After multiple rounds of pile sorting [ 21 ], based on similarities and differences and discussions in the research team, this long code list was grouped into a total of 27 categories, which were thereafter subsequently organized into 14 descriptive themes within the three research phases (preparation, execution, translation).

Study selection and characteristics

The Prisma Flow Diagram was used to summarize the study selection process [ 22 ]. In the full text screening, 72 of the 93 remaining studies were excluded because they were not original research articles (n = 5), not about involvement (n = 8), not about involvement in a research project (n = 1), they did not describe a model or method for involvement (n = 34), or they were not about PLWD or LTC users (n = 24). The search resulted in 18 publications eligible for analysis (Fig.  1 ).

Preferred Reporting items for Systematic Reviews and Meta-analyses (PRISMA) flow diagram

Table 1 presents the general study characteristics. Two studies explicitly aimed to develop a model for involvement or good practice, and both focus on co-research either with PLWD [ 23 ] or their carers [ 13 ]. The other sixteen provide a description of the involvement of PLWD [ 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 ] or LTC users in their research projects [ 35 , 36 , 37 , 38 , 39 ].

Quality assessment

Table 1 presents the CASP-score per study [ 17 ]. Five scored 16 to 18 points [ 13 , 28 , 29 , 32 , 35 ], indicating high quality with robust methods, clear aims, and strong data analysis. Eleven scored 12 to 15 [ 23 , 24 , 26 , 30 , 32 , 33 , 34 , 36 , 37 , 38 , 39 ], showing generally strong methodologies but with some limitations. Two scored 9 or lower [ 25 , 27 ], signifying significant methodological and analytical shortcomings. Notably, these low-scoring studies were short articles lacking clear recommendations for involvement in research.

Design and implementation of involvement

Phases and methods of involvement.

Table 2 describes the involvement methods used for and the implementation of involvement in research. The included studies jointly presented methods for involvement in the three main research phases [ 19 ]. Regarding the preparation phase, which involves the preparatory work for the study, only three studies provided detailed descriptions of the methods employed [ 26 , 30 , 32 ]. The execution phase, encompassing the actual conduct of the research, was most frequently discussed [ 23 , 24 , 25 , 26 , 27 , 28 , 29 ]. Five studies addressed the translation phase [ 13 , 25 , 31 , 36 , 37 ], where the focus shifts to translating research findings into actionable outcomes.

The eighteen studies introduced a variety of involvement methods, categorizable into five groups: 1) advisory groups, 2) research team meetings (both formal and informal), 3) action groups, 4) workshops, and 5) co-research in interviews. In five studies, individuals including PLWD, LTCF residents, carers, and health professionals participated in advisory/reference groups [ 25 , 26 , 27 , 32 ], working groups [ 27 ], and panels [ 28 ]. These groups offered valuable feedback on research aspects, spanning protocols, design, questionnaires, and implementation of research. Meetings occurred at varying frequencies - monthly, quarterly, or biannually.

Two studies exemplify diverse research collaboration settings. One involving older individuals within an academic research team of five [ 37 ], and another featuring a doctoral student and a co-researcher conducting informal monthly discussions at a local coffee shop [ 31 ]. Brown et al. sought to minimize power differentials and enhance inclusivity [ 37 ], while Mann and Hung focused on benefiting people with dementia and challenging negative discourse on dementia [ 31 ].

An additional five studies employed methods involving frequent meetings, including action [ 35 , 39 ], inquiry [ 23 ], and discussion groups [ 29 , 36 ] In these groups, involved persons with lived experience contributed to developing a shared vision and community improvements, such as enhancing the mealtime experience in care facilities [ 35 ].

Seven studies involved individuals through workshops, often conducted over one or two sessions. These workshops contributed to generating recommendations [ 37 ], informing future e-health designs [ 29 , 30 ], and ensuring diverse perspectives and lived experiences were included in data analysis [ 13 , 24 , 32 , 33 ]. In three studies, representatives worked as co-researchers in interviews, drawing on personal experiences to enhance the interview process, making it more dementia-appropriate and enriching data collection [ 13 , 32 , 34 ]. Finally, one study involved representatives in the recruitment and conduct of interviews [ 38 ].

People involved

The number of persons involved varied from a single co-researcher [ 31 ] to 34 panel individuals providing feedback on their experiences in a clinical trial [ 28 ]. Thirteen studies focussed on PLWD: eleven involved PLWD themselves [ 23 , 24 , 25 , 26 , 27 , 29 , 30 , 31 , 32 , 33 , 34 ], one exclusively focused on caregivers [ 13 ], and another one involved people without or with mild cognitive impairment, who participated in a study examining the risks of developing Alzheimer's disease [ 28 ]. Although not all articles provided descriptions of the dementia stage, available information indicated that individuals involved typically fell within the early to mid-stages of dementia [ 29 , 30 , 32 , 33 , 34 ]. Next to PLWD and carers, two studies additionally involved organizational or advocacy representatives [ 25 , 27 ]. The other five studies concerned older adults living in a LTC facility. Two of them involved older residents themselves [ 35 , 39 ], the other three carers, older community/client representatives or health care practitioners [ 36 , 37 , 38 ].

Roles and level of involvement

Four general roles could be identified. First, consultation and advisory roles were held by PLWD and carers [ 25 , 26 , 27 , 28 , 29 , 30 , 32 ], where involved persons share knowledge and experiences to make suggestions [ 32 ], but the research team retained formal decision-making power [ 25 ]. Second, PLWD were involved as co-analysts in data analysis [ 24 , 32 , 33 ]. Co-analysts influence data analysis, but the decision-making power remained with academic researchers [ 24 ]. Third, in six studies the co-researcher role was part of the research design in which involved persons and researchers steer and conduct research together [ 13 , 23 , 31 , 32 , 34 , 36 ]. Finally, two studies partnered with LTC residents [ 35 , 39 ], with residents at the core of the group, and positioned as experts by experience [ 39 ]. Residents had the decision-making authority regarding how to improve life in LTC facilities [ 35 ].

Models for involvement in research

Only two studies designed a model for co-research with PLWD [ 23 ] or their carers [ 13 ] across all research phases. These models underscored the importance of iterative training for co-researchers [ 13 , 23 ] and academic researchers [ 23 ]. Furthermore, these studies advocate involving co-researchers early on in the research process [ 13 ] and in steering committees [ 23 ]. Co-researchers can be involved in designing research materials [ 23 ], conducting interviews [ 13 , 23 ], analysing data [ 13 ], and co-disseminating findings [ 13 , 23 ]. Additionally, one study stressed involving PLWD in identifying (future) research priorities [ 23 ].

Barriers, facilitators, and good practices in research phases

Preparation phase.

Table 3 describes the barriers, facilitators, and good practices per main research phase. Lack of diversity in ethnicity and stages of dementia in the recruitment of involved persons is mentioned as a recurring barrier [ 26 , 28 , 32 , 33 ]. The exclusion of people with cognitive impairments is partly due to gatekeepers’ and recruiters’ bias towards cognitively healthy people [ 28 , 32 ]. It is stressed that researchers should refrain from making assumptions about the abilities of PLWD and ask the person what he/she is willing to do [ 31 ]. It is considered good practice to involve people regardless of cognitive abilities [ 23 ], based on skills, various personal characteristics [ 13 ] and, if possible, relevant prior experience [ 38 ].

Many studies stress the importance of building a mutual trusting relationship between involved persons and academic researchers [ 13 , 23 , 31 , 33 , 34 , 37 ]. A good relationship is believed to break down social barriers [ 37 ], foster freedom of expression [ 33 ], and thereby avoiding tokenistic involvement [ 13 ]. In addition, spending time with these persons is important to become familiar with an individual’s strengths and limitations [ 31 ].

Opting for naturally evolving involvement roles was mentioned as a barrier, as this may result in conflicting expectations and irrelevant tasks [ 37 ]. A clear role description and clarification of tasks is key to balancing potentially different expectations of the involved persons and researchers [ 26 , 28 , 29 , 32 , 38 ]. When designing a role for involvement in research, good practices dictate taking into account personal skills, preferences, development goals, and motivation for involvement [ 13 , 32 ]. This role should ideally be designed in collaboration with involved persons [ 13 , 32 ].

The perception of providing training to involved persons is ambivalent. Studies cited that training should not aim to transform them into “pseudo-scientist” [ 32 , 37 ] and that it raises the costs for involvement [ 28 ]. However, multiple scholars emphasize the importance of providing iterative training to facilitate meaningful involvement and development opportunities [ 13 , 23 , 28 , 31 , 32 , 33 , 36 , 37 ]. Training can empower involved persons to engage in the research process equally and with confidence, with the skills to fulfil their role [ 13 , 33 , 38 ]. However, the implementation of training may present a potential conflict with the fundamental principle of valuing experiential knowledge [ 37 ] and should avoid the objective of transforming co-researchers into 'expert' researchers [ 32 ]. Academic researchers should also be offered training on how to facilitate meaningful involvement [ 13 , 23 , 28 , 31 ].

Limited time and resources were mentioned as barriers to involvement that can delay the research process [ 13 , 33 , 36 , 39 ], restrict the involvement [ 28 ] and hinder the implementation of developed ideas [ 39 ]. Financial compensation for involvement is encouraged [ 25 , 26 , 27 , 32 ], as it acknowledges the contribution of involved persons [ 13 ]. Thus, meaningful involvement in research requires adequate funding and infrastructure to support the involvement activities [ 13 , 28 , 33 , 37 ].

Execution phase

The use of academic jargon and rapid paced discussions [ 13 , 37 ], power differentials, and the dominant discourse in biomedical research on what is considered “good science” can limit the impact of involvement [ 13 , 24 , 32 , 36 , 37 ]. Facilitating researchers should reflect on power differentials [ 35 ] and how decision-making power is shared [ 31 ]. Other facilitating factors are making a glossary of terms used and planning separate meetings for “technical topics” [ 37 ]. In addition, an emergent research design [ 35 ] or a design with flexible elements [ 28 ] can increase ownership in the research project and provide space for involvement to inform the research agenda [ 28 , 35 ]. This requires academic researchers to value experiential knowledge and to have an open mind towards the evolving research process [ 13 , 23 , 31 ].

Furthermore, managing the involvement process and ensuring equity in the collaboration [ 13 , 32 , 33 ], facilitating researchers must encourage involved persons to voice their perspectives. This means that they sometimes need to be convinced that they are experts of lived experience [ 32 , 33 , 36 , 37 , 39 ]. To enable involvement of PLWD, the use of visual and creative tools to prompt memories can be considered [ 24 , 30 , 33 , 34 ], as well as flexibility in relation to time frames and planning regular breaks to avoid too fast a pace for people who may tire easily [ 24 , 25 , 29 , 30 ].

Involvement can be experienced as stressful [ 13 , 32 , 38 ] and caring responsibilities may interfere [ 26 ]. Tailored [ 29 ] physical and emotional support should therefore be offered [ 13 , 23 , 38 ] without making assumptions about the meaning of burden [ 30 , 31 ]. Moreover, being the only PLWD involved in an advisory group was experienced as intimidating [ 25 ] and, ideally, a larger team of PLWD is involved to mitigate responsibilities [ 37 ]. PLWD having a focal point of contact [ 28 , 37 ] and involving nurses or other staff with experience working with PLWD and their carers [ 29 , 30 ] are mentioned as being beneficial. Some stress the importance of involving carers when engaging with PLWD in research [ 25 , 29 , 30 ].

To avoid an overload of information that is shared with the involved persons, tailoring information-sharing formats to individual preferences and abilities is essential to make communication effective [ 27 , 37 ].

Translation

Two studies indicated a need for more robust evaluation measures to assess the effect of involvement [ 28 , 33 ]. Reflection and evaluation of the involvement serves to improve the collaboration and to foster introspective learning [ 13 , 23 , 26 , 31 ]. The included studies evaluated involvement through the use of reflective diaries [ 13 ] or a template [ 38 ] with open-ended questions [ 33 ].

Two studies postulate that findings should benefit and be accessible to PLWD [ 23 , 31 ]. The use of creative tools not only enables involvement of PLWD, but can also increase accessibility of research findings and expand the present representation of PLWD [ 23 ].

The 18 included studies presented multiple methods for involvement in all three research phases. We found five types of involvement: advisory groups, (formal and informal) research team meetings, action groups, workshops, and co-conducting interviews. Only two studies described methods for involvement of LTC users in research. Involved persons were most often involved in consulting and advisory roles, but also as co-analysts, co-researchers, and partners. Involved persons’ roles can evolve and change over time. Especially as involved persons grow into their role, and gain confidence and knowledge of the specific research project, a more active role with shared responsibilities can become part of the research project. In addition, multiple involvement roles can be used throughout the research depending on the research phase.

Compared to the five types of involvement that we identified, other literature reviews about involvement methods for LTC users and PLWD in research also described advisory groups [ 10 ] and workshops [ 5 , 11 ], and methods that were similar to research team meetings (drop-in sessions and meetings [ 11 ]). Methods for action research (action groups) and co-conducting research (interviews) were not included by these other review studies. In addition to our findings, these other reviews also described as involvement methods interviews and focus groups [ 5 , 10 ] surveys [ 10 ], reader consultation [ 11 ]. Those types of methods were excluded from our study, because our definition of involvement is more strict; collecting opinions is not involvement per se, but sometimes only study participation. Moreover, compared to these previous reviews we set a high standard for transparency about the participation methods and the level of detail at which they are described.

Engaging the target group in research, particularly when collaborating with PLWD, LTC users, and carers, involves navigating unforeseen challenges [ 40 ]. This requires academic researchers to carefully balance academic research goals and expectations, and the expectations, personal circumstances and development goals related to the involved person. The aim is to maximize involvement while being attentive to the individual’s needs and avoiding a deficit perspective. Effective communication should be established, promoting respect, equality, and regular feedback between all stakeholders, including individuals living with dementia and LTCF staff. Building a mutual trusting relationship between involved persons and academic researchers through social interaction and clear communication is key to overcome barriers and ensure meaningful involvement. Inclusivity and empowerment, along with fostering an environment where diverse voices are heard, are crucial for the success of involvement in research. Our results are in line with a recent study concerning the experiences of frail older persons with involvement in research, confirming the importance of avoiding stereotypic views of ageing and frailty, building a trusting relationship, and being sensitive to older persons’ preferences and needs [ 41 ].

Furthermore, our results show that training academic researchers and involved persons is essential to develop the skills to facilitate involvement and to fulfil their role with confidence, respectively. Whilst the need for training is acknowledged by others [ 41 , 42 ], there are legitimate objections to the idea of training involved persons, as the professionalization underpinning the concept of training is at odds with voicing a lay perspective [ 43 , 44 ]. Furthermore, it is argued that experiential knowledge is compromised when training is structured according to the dominant professional epistemology of objectivity [ 45 ]. Therefore, training of involved persons should not focus on what researchers think they ought to know, but on what they want to learn [ 41 ].

Academic culture was frequently mentioned as a barrier to meaningful involvement. This result resonates with the wider debate related to involvement in health research which is concerned about active or “authentic involvement” being replaced with the appropriation of the patient voice as an add-on to conventional research designs [ 12 , 46 ]. It is argued that such tokenistic involvement limits the involved persons’ ability to shape research outcomes [ 46 ]. To reduce tokenism requires a culture shift [ 13 ]. We believe that due to the strict definition of involvement and high transparency standard used in this review, tokenistic approaches were excluded. This may set an example for how to stimulate making this culture shift.

Furthermore, the importance of practical aspects such as funding and, by extension, the availability of time should not be underestimated. Adequate funding is necessary for compensation of involvement, but also to ensure that researchers have ample time to plan involvement activities and provide personalized support for PLWD, LTC residents and their carers. Funding bodies increasingly require involvement of the public to be part of research proposals. Yet, support in terms of financial compensation and time for the implementation of involvement in research is rarely part of funding grants [ 42 ]. In addition, whereas an emergent design could aid the impact of involvement, funders often require a pre-set research proposal in which individual components are already fixed [ 5 , 47 ]. This indicates that not only do academic researchers and culture need to change, academic systems also need to be modified in order to facilitate and nurture meaningful involvement [ 47 ].

Strengths and limitations

A key strength of this review is the inclusion of over ten scientific databases, with a reach beyond the conventional biomedical science databases often consulted in systematic reviews. Besides, we believe that we have overcome the inconsistent use of terminology of involvement in research by including also other terms used, such as participation and engagement, in our search strategy. However, there was also inconsistency in length of publications and precision of the explanation of the process of involvement. E.g., involvement in the execution phase was often elaborated on, contributions to the research proposal and co-authoring research findings were only stated and not described. This presented challenges for data extraction and analysis, as it was not always possible to identify how the target group was involved. Involvement in these research phases is therefore not fully represented in this review.

The included studies in this review, the majority of which are of high quality, provide methods for involvement of PLWD and LTC users in research and they do not explicitly attend to the effectiveness or impact of the method for involvement used. Therefore, a limitation of this review is that it cannot make any statements regarding the effectiveness of the involvement methods included. Moreover, our target population was broad, although PLWD and LTC users are largely overlapping in their care needs and share important features, this may have led to heterogeneous results. In future research, it would be interesting to interpret potential differences between involvement of PLWD, LTC users, and their carers. However, as we expected, the amount of literature included in our analyses was too limited to do so. Furthermore, whereas the broad target group is a limitation it is also a strength of our review. Limiting our search to specifically persons living in LTC facilities would have provided limited methods for involvement of persons living with dementia. Our broad target groups enabled us to learn from research projects in which people living with early staged dementia are directly involved from which we can draw lessons on the involvement of people with more advanced stages of dementia and persons living with cognitive problems who live within LTC facilities.

Since January 2021 quite some research has been published about the importance of involvement in research. Although we had quickly screened for new methods, we realise that we may have missed some involvement methods in the past years. There will be a need for a search update in the future.

Implications for future research

Our review shows that a flexible and emergent design may help to increase involved persons' influence on and ownership in the research process. However, not all research objectives may be suitable for the implementation of an emergent design. Future research should therefore examine how aspects of a flexible emergent design can be integrated in, e.g., clinical research without compromising the validity of research outcomes.

Alzheimer Europe has called for the direct involvement of persons living with dementia in research [ 48 ]. In addition, Swarbrick et al. (this review) advise to involve persons regardless of their cognitive abilities [ 23 ]. These statements question the involvement of proxies, such as carers, professional caregivers and others involved in the care of PLWD. While PLWD and persons with other cognitive problems constitute a significant group within residential and nursing homes [ 7 ], none of the studies included in this review have provided methods to directly involve persons with more advanced stages of dementia. This raises the question if research methods should be adapted to allow those with more advanced stages of dementia to be involved themselves or if, concerning the progressive nature of the disease, it is more appropriate to involve proxies. And secondly who should these proxies be? Those that care for and live with persons with an advanced stage of dementia, or for example a person living with an early stage of dementia to represent the voices of persons with more advanced stages of dementia [ 31 ]?

Future research should adopt our example for stricter requirements for involvement and transparency about the involvement methods used. This will reduce tokenistic involvement and further promote the culture shift towards meaningful involvement. In addition, future research should assess the impact of the involvement methods that are described in this review. One of the first instruments that that may be used to do so in varying healthcare settings is the Public and Patient Engagement Evaluation Tool (PPEET) [ 49 ]. Moreover, scholars in this review stress, and we agree with this, that future research is needed on the involvement of persons with more advanced stages of dementia to ensure their voices are not excluded from research [ 33 , 34 ].

This review provides an overview of the existing methods used to actively involve PLWD, LTC users, and carers in scientific research. Our findings show that their involvement is feasible throughout all research phases. We have identified five different methods for involvement, four different roles, and two models for co-research. Our results suggest that planning enough time for involving PLWD, LTC users, and carers in research, is important to ensure that researchers have time to build a trusting relationship and meet their personal needs and preferences. In addition, researchers are advised not to presume the meaning of burden and to avoid a deficit perspective. A flexible or emergent design could aid involved persons’ ownership in the research process.

Availability of data and materials

The full search strategy is provided in supplement 1 . The data extraction form can be provided by the corresponding author on reasonable request.

Abbreviations

Critical Appraisal Skills Programme

Guidance for Reporting Involvement of Patients and the Public, long form version 2

• Long-term care

Persons living with dementia

Domecq JP, Prutsky G, Elraiyah T, et al. Patient engagement in research: a systematic review. BMC Health Serv Res. 2014;14(1):1–9. https://doi.org/10.1186/1472-6963-14-89 .

Article   Google Scholar  

Brett J, Staniszewska S, Mockford C, et al. A systematic review of the impact of patient and public involvement on service users, researchers and communities. Patient-Patient-Centered Outcomes Res. 2014;7(4):387–95. https://doi.org/10.1007/s40271-014-0065-0 .

Staley K. Exploring impact: Public involvement in NHS, public health and social care research. 2009. Available from: https://www.invo.org.uk/wp-content/uploads/2011/11/Involve_Exploring_Impactfinal28.10.09.pdf . Accessed 17 Jan 2024

Ashcroft J, Wykes T, Taylor J, et al. Impact on the individual: what do patients and carers gain, lose and expect from being involved in research? J Ment Health. 2016;25(1):28–35. https://doi.org/10.3109/09638237.2015.1101424 .

Article   PubMed   PubMed Central   Google Scholar  

Backhouse T, Kenkmann A, Lane K, et al. Older care-home residents as collaborators or advisors in research: a systematic review. Age Ageing. 2016;45(3):337–45. https://doi.org/10.1093/ageing/afv201 .

Bendien E, Groot B, Abma T. Circles of impacts within and beyond participatory action research with older people. Ageing Soc 2020:1–21. https://doi.org/10.1017/S0144686X20001336 .

Lepore MED, Meyer J, Igarashi A. How long-term care quality assurance measures address dementia in Australia, England, Japan, and the United States. Ageing Health Res 2021;1(2). https://doi.org/10.1016/j.ahr.2021.100013 .

Freedman VA, Spillman BC. Disability and care needs among older Americans. Milbank Q. 2014;92(3):509–41. https://doi.org/10.1111/1468-0009.12076 .

Bethell J, Commisso E, Rostad HM, et al. Patient engagement in research related to dementia: a scoping review. Dementia. 2018;17(8):944–75. https://doi.org/10.1177/1471301218789292 .

Article   PubMed   Google Scholar  

Miah J, Dawes P, Edwards S, et al. Patient and public involvement in dementia research in the European Union: a scoping review. BMC Geriatr. 2019;19(1):1–20. https://doi.org/10.1186/s12877-019-1217-9 .

Schilling I, Gerhardus A. Methods for involving older people in health research—a review of the literature. Int J Environ Res Public Health. 2017;14(12):1476. https://doi.org/10.3390/ijerph14121476 .

Andersson N. Participatory research—A modernizing science for primary health care. J Gen Fam Med. 2018;19(5):154–9. https://doi.org/10.1002/jgf2.187 .

Di Lorito C, Godfrey M, Dunlop M, et al. Adding to the knowledge on patient and public involvement: reflections from an experience of co-research with carers of people with dementia. Health Expect. 2020;23(3):691–706. https://doi.org/10.1111/hex.13049 .

Islam S, Small N. An annotated and critical glossary of the terminology of inclusion in healthcare and health research. Res Involve Engage. 2020;6(1):1–9. https://doi.org/10.1186/s40900-020-00186-6 .

Rose D. Patient and public involvement in health research: Ethical imperative and/or radical challenge? J Health Psychol. 2014;19(1):149–58. https://doi.org/10.1177/1359105313500249 .

NIHR. Briefing notes for researchers: public involvement in NHS, health and social care research. https://www.nihr.ac.uk/documents/briefing-notes-for-researchers-public-involvement-in-nhs-health-and-social-care-research/27371#Involvement . Accessed 12 Jan 2023.

Critical Appraisal Skills Programme. CASP Qualitative Checklist. 2018. https://casp-uk.net/images/checklist/documents/CASP-Qualitative-Studies-Checklist/CASP-Qualitative-Checklist-2018_fillable_form.pdf . Accessed 12 Jan 2023.

Staniszewska S, Brett J, Simera I, et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. Res Involv Engagem. 2017;3:13. https://doi.org/10.1186/s40900-017-0062-2 .

Article   CAS   PubMed   PubMed Central   Google Scholar  

Shippee ND, Domecq Garces JP, Prutsky Lopez GJ, et al. Patient and service user engagement in research: a systematic review and synthesized framework. Health Expect. 2015;18(5):1151–66. https://doi.org/10.1111/hex.12090 .

Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol. 2008;8(1):1–10. https://doi.org/10.1186/1471-2288-8-45 .

Saldana JM. The coding manual for qualitative researchers. London: SAGE Publications; 2015.

Google Scholar  

Page MJ, McKenzie JE, Bossuyt PM, The PRISMA, et al. statement: an updated guideline for reporting systematic reviews. BMJ. 2020;2021:372. https://doi.org/10.1136/bmj.n71 .

Swarbrick C, Doors O, et al. Developing the co-researcher involvement and engagement in dementia model (COINED): A co-operative inquiry. In: Keady J, Hydén L-C, Johnson A, et al., editors. Social research methods in dementia studies: Inclusion and innovation. New York, Routledge: Taylor & Francis Group; 2018. p. 8–19.

Clarke CL, Wilkinson H, Watson J, et al. A seat around the table: participatory data analysis with people living with dementia. Qual Health Res. 2018;28(9):1421–33. https://doi.org/10.1177/1049732318774768 .

Flavin T, Sinclair C. Reflections on involving people living with dementia in research in the Australian context. Australas J Ageing. 2019;38(Suppl 2):6–8. https://doi.org/10.1111/ajag.12596 .

Giebel C, Roe B, Hodgson A, et al. Effective public involvement in the HoST-D programme for dementia home care support: From proposal and design to methods of data collection (innovative practice). Dementia (London). 2019;18(7–8):3173–86. https://doi.org/10.1177/1471301216687698 .

Goeman DP, Corlis M, Swaffer K, et al. Partnering with people with dementia and their care partners, aged care service experts, policymakers and academics: a co-design process. Australas J Ageing. 2019;38(Suppl 2):53–8. https://doi.org/10.1111/ajag.12635 .

Gregory S, Bunnik EM, Callado AB, et al. Involving research participants in a pan-European research initiative: the EPAD participant panel experience. Res Involv Engagem. 2020;6:62. https://doi.org/10.1186/s40900-020-00236-z .

Hanson E, Magnusson L, Arvidsson H, et al. Working together with persons with early stage dementia and their family members to design a user-friendly technology-based support service. Dementia. 2007;6(3):411–34. https://doi.org/10.1177/1471301207081572 .

Hassan L, Swarbrick C, Sanders C, et al. Tea, talk and technology: patient and public involvement to improve connected health “wearables” research in dementia. Res Involv Engagem. 2017;3:12. https://doi.org/10.1186/s40900-017-0063-1 .

Mann J, Hung L. Co-research with people living with dementia for change. Action Research. 2019;17(4):573–90. https://doi.org/10.1177/1476750318787005 .

Poland F, Charlesworth G, Leung P, et al. Embedding patient and public involvement: managing tacit and explicit expectations. Health Expect. 2019;22(6):1231–9. https://doi.org/10.1111/hex.12952 .

Stevenson M, Taylor BJ. Involving individuals with dementia as co-researchers in analysis of findings from a qualitative study. Dementia (London). 2019;18(2):701–12. https://doi.org/10.1177/1471301217690904 .

Tanner D. Co-research with older people with dementia: experience and reflections. J Ment Health. 2012;21(3):296–306. https://doi.org/10.3109/09638237.2011.651658 .

Baur V, Abma T. “The Taste Buddies”: participation and empowerment in a residential home for older people. Ageing Soc. 2012;32(6):1055–78. https://doi.org/10.1017/S0144686X11000766 .

Beukema L, Valkenburg B. Demand-driven elderly care in the Netherlands. Action Research. 2007;5(2):161–80. https://doi.org/10.1177/1476750307077316 .

Brown LJE, Dickinson T, Smith S, et al. Openness, inclusion and transparency in the practice of public involvement in research: a reflective exercise to develop best practice recommendations. Health Expect. 2018;21(2):441–7. https://doi.org/10.1111/hex.12609 .

Froggatt K, Goodman C, Morbey H, et al. Public involvement in research within care homes: benefits and challenges in the APPROACH study. Health Expect. 2016;19(6):1336–45. https://doi.org/10.1111/hex.12431 .

Shura R, Siders RA, Dannefer D. Culture change in long-term care: participatory action research and the role of the resident. Gerontologist. 2011;51(2):212–25. https://doi.org/10.1093/geront/gnq099 .

Cook T. Participatory research: Its meaning and messiness. Beleidsonderzoek Online. 2020;3:1–21. https://doi.org/10.5553/BO/221335502021000003001 .

Haak M, Ivanoff S, Barenfeld E, et al. Research as an essentiality beyond one’s own competence: an interview study on frail older people’s view of research. Res Involv Engage. 2021;7(1):1–8. https://doi.org/10.1186/s40900-021-00333-7 .

Chamberlain SA, Gruneir A, Keefe JM, et al. Evolving partnerships: engagement methods in an established health services research team. Res Involve Engage. 2021;7(1):1–11. https://doi.org/10.1186/s40900-021-00314-w .

Bélisle-Pipon J-C, Rouleau G, Birko S. Early-career researchers’ views on ethical dimensions of patient engagement in research. BMC Med Ethics. 2018;19(1):1–10. https://doi.org/10.1186/s12910-018-0260-y .

Ives J, Damery S, Redwod S. PPI, paradoxes and Plato: who’s sailing the ship? J Med Ethics. 2013;39(3):181–5. https://doi.org/10.1136/medethics-2011-100150 .

De Graaff M, Stoopendaal A, Leistikow I. Transforming clients into experts-by-experience: a pilot in client participation in Dutch long-term elderly care homes inspectorate supervision. Health Policy. 2019;123(3):275–80. https://doi.org/10.1016/j.healthpol.2018.11.006 .

Cook T. Where Participatory Approaches Meet Pragmatism in Funded (Health) Research: The Challenge of Finding Meaningful Spaces. Forum Qualitative Sozialforschung Forum: Qualitative Social Research. 2012;13(1). https://doi.org/10.17169/fqs-13.1.1783 .

Paylor J, McKevitt C. The possibilities and limits of “co-producing” research. Front Sociol. 2019;4:23. https://doi.org/10.3389/fsoc.2019.00023 .

Gove D, Diaz-Ponce A, Georges J, et al. Alzheimer Europe’s position on involving people with dementia in research through PPI (patient and public involvement). Aging Ment Health. 2018;22(6):723–9. https://doi.org/10.1080/13607863.2017.1317334 .

Abelson J, Li K, Wilson G, et al. Supporting quality public and patient engagement in health system organizations: development and usability testing of the Public and Patient Engagement Evaluation Tool. Health Expect. 2016;19(4):817–27. https://doi.org/10.1111/hex.12378 .

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Acknowledgements

We thank Jan W. Schoones, information specialist Directorate of Research Policy (formerly: Walaeus Library, Leiden University Medical Centre, Leiden, the Netherlands), for helping with the search.

This systematic review received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

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Janneke M. Groothuijse, Lisa S. van Tol, C. C. M. (Toos) Hoeksel-van Leeuwen, Monique A. A. Caljouw & Wilco P. Achterberg

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Concept: HD, LT, MC, WA; design of study protocol: JG, LT, MC; data collection and extraction: JG, LT, MC, THL; data analysis and interpretation: all authors; writing, editing and final approval of the manuscript: all authors.

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Groothuijse, J.M., van Tol, L.S., Leeuwen, C.C.M.(.Hv. et al. Active involvement in scientific research of persons living with dementia and long-term care users: a systematic review of existing methods with a specific focus on good practices, facilitators and barriers of involvement. BMC Geriatr 24 , 324 (2024). https://doi.org/10.1186/s12877-024-04877-7

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