data collection in qualitative research. evidence based nursing

In the room where it happens: in-person or remote data collection in qualitative research?

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• 1 Nursing, University of Hull, Hull, UK [email protected].
• 2 Faculty of Health Sciences, University of Hull, Hull, UK.
• PMID: 35246465
• DOI: 10.1136/ebnurs-2022-103535

Keywords: nursing methodology research.

• Data Collection
• Qualitative Research*

Data collection in qualitative research

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https://openresearch.lsbu.ac.uk/item/86qqy

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• Published: 27 May 2020

How to use and assess qualitative research methods

• Loraine Busetto   ORCID: orcid.org/0000-0002-9228-7875 1 ,
• Wolfgang Wick 1 , 2 &
• Christoph Gumbinger 1  

Neurological Research and Practice volume  2 , Article number:  14 ( 2020 ) Cite this article

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This paper aims to provide an overview of the use and assessment of qualitative research methods in the health sciences. Qualitative research can be defined as the study of the nature of phenomena and is especially appropriate for answering questions of why something is (not) observed, assessing complex multi-component interventions, and focussing on intervention improvement. The most common methods of data collection are document study, (non-) participant observations, semi-structured interviews and focus groups. For data analysis, field-notes and audio-recordings are transcribed into protocols and transcripts, and coded using qualitative data management software. Criteria such as checklists, reflexivity, sampling strategies, piloting, co-coding, member-checking and stakeholder involvement can be used to enhance and assess the quality of the research conducted. Using qualitative in addition to quantitative designs will equip us with better tools to address a greater range of research problems, and to fill in blind spots in current neurological research and practice.

The aim of this paper is to provide an overview of qualitative research methods, including hands-on information on how they can be used, reported and assessed. This article is intended for beginning qualitative researchers in the health sciences as well as experienced quantitative researchers who wish to broaden their understanding of qualitative research.

What is qualitative research?

Qualitative research is defined as “the study of the nature of phenomena”, including “their quality, different manifestations, the context in which they appear or the perspectives from which they can be perceived” , but excluding “their range, frequency and place in an objectively determined chain of cause and effect” [ 1 ]. This formal definition can be complemented with a more pragmatic rule of thumb: qualitative research generally includes data in form of words rather than numbers [ 2 ].

Why conduct qualitative research?

Because some research questions cannot be answered using (only) quantitative methods. For example, one Australian study addressed the issue of why patients from Aboriginal communities often present late or not at all to specialist services offered by tertiary care hospitals. Using qualitative interviews with patients and staff, it found one of the most significant access barriers to be transportation problems, including some towns and communities simply not having a bus service to the hospital [ 3 ]. A quantitative study could have measured the number of patients over time or even looked at possible explanatory factors – but only those previously known or suspected to be of relevance. To discover reasons for observed patterns, especially the invisible or surprising ones, qualitative designs are needed.

While qualitative research is common in other fields, it is still relatively underrepresented in health services research. The latter field is more traditionally rooted in the evidence-based-medicine paradigm, as seen in " research that involves testing the effectiveness of various strategies to achieve changes in clinical practice, preferably applying randomised controlled trial study designs (...) " [ 4 ]. This focus on quantitative research and specifically randomised controlled trials (RCT) is visible in the idea of a hierarchy of research evidence which assumes that some research designs are objectively better than others, and that choosing a "lesser" design is only acceptable when the better ones are not practically or ethically feasible [ 5 , 6 ]. Others, however, argue that an objective hierarchy does not exist, and that, instead, the research design and methods should be chosen to fit the specific research question at hand – "questions before methods" [ 2 , 7 , 8 , 9 ]. This means that even when an RCT is possible, some research problems require a different design that is better suited to addressing them. Arguing in JAMA, Berwick uses the example of rapid response teams in hospitals, which he describes as " a complex, multicomponent intervention – essentially a process of social change" susceptible to a range of different context factors including leadership or organisation history. According to him, "[in] such complex terrain, the RCT is an impoverished way to learn. Critics who use it as a truth standard in this context are incorrect" [ 8 ] . Instead of limiting oneself to RCTs, Berwick recommends embracing a wider range of methods , including qualitative ones, which for "these specific applications, (...) are not compromises in learning how to improve; they are superior" [ 8 ].

Research problems that can be approached particularly well using qualitative methods include assessing complex multi-component interventions or systems (of change), addressing questions beyond “what works”, towards “what works for whom when, how and why”, and focussing on intervention improvement rather than accreditation [ 7 , 9 , 10 , 11 , 12 ]. Using qualitative methods can also help shed light on the “softer” side of medical treatment. For example, while quantitative trials can measure the costs and benefits of neuro-oncological treatment in terms of survival rates or adverse effects, qualitative research can help provide a better understanding of patient or caregiver stress, visibility of illness or out-of-pocket expenses.

How to conduct qualitative research?

Given that qualitative research is characterised by flexibility, openness and responsivity to context, the steps of data collection and analysis are not as separate and consecutive as they tend to be in quantitative research [ 13 , 14 ]. As Fossey puts it : “sampling, data collection, analysis and interpretation are related to each other in a cyclical (iterative) manner, rather than following one after another in a stepwise approach” [ 15 ]. The researcher can make educated decisions with regard to the choice of method, how they are implemented, and to which and how many units they are applied [ 13 ]. As shown in Fig.  1 , this can involve several back-and-forth steps between data collection and analysis where new insights and experiences can lead to adaption and expansion of the original plan. Some insights may also necessitate a revision of the research question and/or the research design as a whole. The process ends when saturation is achieved, i.e. when no relevant new information can be found (see also below: sampling and saturation). For reasons of transparency, it is essential for all decisions as well as the underlying reasoning to be well-documented.

Iterative research process

While it is not always explicitly addressed, qualitative methods reflect a different underlying research paradigm than quantitative research (e.g. constructivism or interpretivism as opposed to positivism). The choice of methods can be based on the respective underlying substantive theory or theoretical framework used by the researcher [ 2 ].

Data collection

The methods of qualitative data collection most commonly used in health research are document study, observations, semi-structured interviews and focus groups [ 1 , 14 , 16 , 17 ].

Document study

Document study (also called document analysis) refers to the review by the researcher of written materials [ 14 ]. These can include personal and non-personal documents such as archives, annual reports, guidelines, policy documents, diaries or letters.

Observations

Observations are particularly useful to gain insights into a certain setting and actual behaviour – as opposed to reported behaviour or opinions [ 13 ]. Qualitative observations can be either participant or non-participant in nature. In participant observations, the observer is part of the observed setting, for example a nurse working in an intensive care unit [ 18 ]. In non-participant observations, the observer is “on the outside looking in”, i.e. present in but not part of the situation, trying not to influence the setting by their presence. Observations can be planned (e.g. for 3 h during the day or night shift) or ad hoc (e.g. as soon as a stroke patient arrives at the emergency room). During the observation, the observer takes notes on everything or certain pre-determined parts of what is happening around them, for example focusing on physician-patient interactions or communication between different professional groups. Written notes can be taken during or after the observations, depending on feasibility (which is usually lower during participant observations) and acceptability (e.g. when the observer is perceived to be judging the observed). Afterwards, these field notes are transcribed into observation protocols. If more than one observer was involved, field notes are taken independently, but notes can be consolidated into one protocol after discussions. Advantages of conducting observations include minimising the distance between the researcher and the researched, the potential discovery of topics that the researcher did not realise were relevant and gaining deeper insights into the real-world dimensions of the research problem at hand [ 18 ].

Semi-structured interviews

Hijmans & Kuyper describe qualitative interviews as “an exchange with an informal character, a conversation with a goal” [ 19 ]. Interviews are used to gain insights into a person’s subjective experiences, opinions and motivations – as opposed to facts or behaviours [ 13 ]. Interviews can be distinguished by the degree to which they are structured (i.e. a questionnaire), open (e.g. free conversation or autobiographical interviews) or semi-structured [ 2 , 13 ]. Semi-structured interviews are characterized by open-ended questions and the use of an interview guide (or topic guide/list) in which the broad areas of interest, sometimes including sub-questions, are defined [ 19 ]. The pre-defined topics in the interview guide can be derived from the literature, previous research or a preliminary method of data collection, e.g. document study or observations. The topic list is usually adapted and improved at the start of the data collection process as the interviewer learns more about the field [ 20 ]. Across interviews the focus on the different (blocks of) questions may differ and some questions may be skipped altogether (e.g. if the interviewee is not able or willing to answer the questions or for concerns about the total length of the interview) [ 20 ]. Qualitative interviews are usually not conducted in written format as it impedes on the interactive component of the method [ 20 ]. In comparison to written surveys, qualitative interviews have the advantage of being interactive and allowing for unexpected topics to emerge and to be taken up by the researcher. This can also help overcome a provider or researcher-centred bias often found in written surveys, which by nature, can only measure what is already known or expected to be of relevance to the researcher. Interviews can be audio- or video-taped; but sometimes it is only feasible or acceptable for the interviewer to take written notes [ 14 , 16 , 20 ].

Focus groups

Focus groups are group interviews to explore participants’ expertise and experiences, including explorations of how and why people behave in certain ways [ 1 ]. Focus groups usually consist of 6–8 people and are led by an experienced moderator following a topic guide or “script” [ 21 ]. They can involve an observer who takes note of the non-verbal aspects of the situation, possibly using an observation guide [ 21 ]. Depending on researchers’ and participants’ preferences, the discussions can be audio- or video-taped and transcribed afterwards [ 21 ]. Focus groups are useful for bringing together homogeneous (to a lesser extent heterogeneous) groups of participants with relevant expertise and experience on a given topic on which they can share detailed information [ 21 ]. Focus groups are a relatively easy, fast and inexpensive method to gain access to information on interactions in a given group, i.e. “the sharing and comparing” among participants [ 21 ]. Disadvantages include less control over the process and a lesser extent to which each individual may participate. Moreover, focus group moderators need experience, as do those tasked with the analysis of the resulting data. Focus groups can be less appropriate for discussing sensitive topics that participants might be reluctant to disclose in a group setting [ 13 ]. Moreover, attention must be paid to the emergence of “groupthink” as well as possible power dynamics within the group, e.g. when patients are awed or intimidated by health professionals.

Choosing the “right” method

As explained above, the school of thought underlying qualitative research assumes no objective hierarchy of evidence and methods. This means that each choice of single or combined methods has to be based on the research question that needs to be answered and a critical assessment with regard to whether or to what extent the chosen method can accomplish this – i.e. the “fit” between question and method [ 14 ]. It is necessary for these decisions to be documented when they are being made, and to be critically discussed when reporting methods and results.

Let us assume that our research aim is to examine the (clinical) processes around acute endovascular treatment (EVT), from the patient’s arrival at the emergency room to recanalization, with the aim to identify possible causes for delay and/or other causes for sub-optimal treatment outcome. As a first step, we could conduct a document study of the relevant standard operating procedures (SOPs) for this phase of care – are they up-to-date and in line with current guidelines? Do they contain any mistakes, irregularities or uncertainties that could cause delays or other problems? Regardless of the answers to these questions, the results have to be interpreted based on what they are: a written outline of what care processes in this hospital should look like. If we want to know what they actually look like in practice, we can conduct observations of the processes described in the SOPs. These results can (and should) be analysed in themselves, but also in comparison to the results of the document analysis, especially as regards relevant discrepancies. Do the SOPs outline specific tests for which no equipment can be observed or tasks to be performed by specialized nurses who are not present during the observation? It might also be possible that the written SOP is outdated, but the actual care provided is in line with current best practice. In order to find out why these discrepancies exist, it can be useful to conduct interviews. Are the physicians simply not aware of the SOPs (because their existence is limited to the hospital’s intranet) or do they actively disagree with them or does the infrastructure make it impossible to provide the care as described? Another rationale for adding interviews is that some situations (or all of their possible variations for different patient groups or the day, night or weekend shift) cannot practically or ethically be observed. In this case, it is possible to ask those involved to report on their actions – being aware that this is not the same as the actual observation. A senior physician’s or hospital manager’s description of certain situations might differ from a nurse’s or junior physician’s one, maybe because they intentionally misrepresent facts or maybe because different aspects of the process are visible or important to them. In some cases, it can also be relevant to consider to whom the interviewee is disclosing this information – someone they trust, someone they are otherwise not connected to, or someone they suspect or are aware of being in a potentially “dangerous” power relationship to them. Lastly, a focus group could be conducted with representatives of the relevant professional groups to explore how and why exactly they provide care around EVT. The discussion might reveal discrepancies (between SOPs and actual care or between different physicians) and motivations to the researchers as well as to the focus group members that they might not have been aware of themselves. For the focus group to deliver relevant information, attention has to be paid to its composition and conduct, for example, to make sure that all participants feel safe to disclose sensitive or potentially problematic information or that the discussion is not dominated by (senior) physicians only. The resulting combination of data collection methods is shown in Fig.  2 .

Possible combination of data collection methods

Attributions for icons: “Book” by Serhii Smirnov, “Interview” by Adrien Coquet, FR, “Magnifying Glass” by anggun, ID, “Business communication” by Vectors Market; all from the Noun Project

The combination of multiple data source as described for this example can be referred to as “triangulation”, in which multiple measurements are carried out from different angles to achieve a more comprehensive understanding of the phenomenon under study [ 22 , 23 ].

Data analysis

To analyse the data collected through observations, interviews and focus groups these need to be transcribed into protocols and transcripts (see Fig.  3 ). Interviews and focus groups can be transcribed verbatim , with or without annotations for behaviour (e.g. laughing, crying, pausing) and with or without phonetic transcription of dialects and filler words, depending on what is expected or known to be relevant for the analysis. In the next step, the protocols and transcripts are coded , that is, marked (or tagged, labelled) with one or more short descriptors of the content of a sentence or paragraph [ 2 , 15 , 23 ]. Jansen describes coding as “connecting the raw data with “theoretical” terms” [ 20 ]. In a more practical sense, coding makes raw data sortable. This makes it possible to extract and examine all segments describing, say, a tele-neurology consultation from multiple data sources (e.g. SOPs, emergency room observations, staff and patient interview). In a process of synthesis and abstraction, the codes are then grouped, summarised and/or categorised [ 15 , 20 ]. The end product of the coding or analysis process is a descriptive theory of the behavioural pattern under investigation [ 20 ]. The coding process is performed using qualitative data management software, the most common ones being InVivo, MaxQDA and Atlas.ti. It should be noted that these are data management tools which support the analysis performed by the researcher(s) [ 14 ].

From data collection to data analysis

Attributions for icons: see Fig. 2 , also “Speech to text” by Trevor Dsouza, “Field Notes” by Mike O’Brien, US, “Voice Record” by ProSymbols, US, “Inspection” by Made, AU, and “Cloud” by Graphic Tigers; all from the Noun Project

How to report qualitative research?

Protocols of qualitative research can be published separately and in advance of the study results. However, the aim is not the same as in RCT protocols, i.e. to pre-define and set in stone the research questions and primary or secondary endpoints. Rather, it is a way to describe the research methods in detail, which might not be possible in the results paper given journals’ word limits. Qualitative research papers are usually longer than their quantitative counterparts to allow for deep understanding and so-called “thick description”. In the methods section, the focus is on transparency of the methods used, including why, how and by whom they were implemented in the specific study setting, so as to enable a discussion of whether and how this may have influenced data collection, analysis and interpretation. The results section usually starts with a paragraph outlining the main findings, followed by more detailed descriptions of, for example, the commonalities, discrepancies or exceptions per category [ 20 ]. Here it is important to support main findings by relevant quotations, which may add information, context, emphasis or real-life examples [ 20 , 23 ]. It is subject to debate in the field whether it is relevant to state the exact number or percentage of respondents supporting a certain statement (e.g. “Five interviewees expressed negative feelings towards XYZ”) [ 21 ].

How to combine qualitative with quantitative research?

Qualitative methods can be combined with other methods in multi- or mixed methods designs, which “[employ] two or more different methods [ …] within the same study or research program rather than confining the research to one single method” [ 24 ]. Reasons for combining methods can be diverse, including triangulation for corroboration of findings, complementarity for illustration and clarification of results, expansion to extend the breadth and range of the study, explanation of (unexpected) results generated with one method with the help of another, or offsetting the weakness of one method with the strength of another [ 1 , 17 , 24 , 25 , 26 ]. The resulting designs can be classified according to when, why and how the different quantitative and/or qualitative data strands are combined. The three most common types of mixed method designs are the convergent parallel design , the explanatory sequential design and the exploratory sequential design. The designs with examples are shown in Fig.  4 .

Three common mixed methods designs

In the convergent parallel design, a qualitative study is conducted in parallel to and independently of a quantitative study, and the results of both studies are compared and combined at the stage of interpretation of results. Using the above example of EVT provision, this could entail setting up a quantitative EVT registry to measure process times and patient outcomes in parallel to conducting the qualitative research outlined above, and then comparing results. Amongst other things, this would make it possible to assess whether interview respondents’ subjective impressions of patients receiving good care match modified Rankin Scores at follow-up, or whether observed delays in care provision are exceptions or the rule when compared to door-to-needle times as documented in the registry. In the explanatory sequential design, a quantitative study is carried out first, followed by a qualitative study to help explain the results from the quantitative study. This would be an appropriate design if the registry alone had revealed relevant delays in door-to-needle times and the qualitative study would be used to understand where and why these occurred, and how they could be improved. In the exploratory design, the qualitative study is carried out first and its results help informing and building the quantitative study in the next step [ 26 ]. If the qualitative study around EVT provision had shown a high level of dissatisfaction among the staff members involved, a quantitative questionnaire investigating staff satisfaction could be set up in the next step, informed by the qualitative study on which topics dissatisfaction had been expressed. Amongst other things, the questionnaire design would make it possible to widen the reach of the research to more respondents from different (types of) hospitals, regions, countries or settings, and to conduct sub-group analyses for different professional groups.

How to assess qualitative research?

A variety of assessment criteria and lists have been developed for qualitative research, ranging in their focus and comprehensiveness [ 14 , 17 , 27 ]. However, none of these has been elevated to the “gold standard” in the field. In the following, we therefore focus on a set of commonly used assessment criteria that, from a practical standpoint, a researcher can look for when assessing a qualitative research report or paper.

Assessors should check the authors’ use of and adherence to the relevant reporting checklists (e.g. Standards for Reporting Qualitative Research (SRQR)) to make sure all items that are relevant for this type of research are addressed [ 23 , 28 ]. Discussions of quantitative measures in addition to or instead of these qualitative measures can be a sign of lower quality of the research (paper). Providing and adhering to a checklist for qualitative research contributes to an important quality criterion for qualitative research, namely transparency [ 15 , 17 , 23 ].

Reflexivity

While methodological transparency and complete reporting is relevant for all types of research, some additional criteria must be taken into account for qualitative research. This includes what is called reflexivity, i.e. sensitivity to the relationship between the researcher and the researched, including how contact was established and maintained, or the background and experience of the researcher(s) involved in data collection and analysis. Depending on the research question and population to be researched this can be limited to professional experience, but it may also include gender, age or ethnicity [ 17 , 27 ]. These details are relevant because in qualitative research, as opposed to quantitative research, the researcher as a person cannot be isolated from the research process [ 23 ]. It may influence the conversation when an interviewed patient speaks to an interviewer who is a physician, or when an interviewee is asked to discuss a gynaecological procedure with a male interviewer, and therefore the reader must be made aware of these details [ 19 ].

Sampling and saturation

The aim of qualitative sampling is for all variants of the objects of observation that are deemed relevant for the study to be present in the sample “ to see the issue and its meanings from as many angles as possible” [ 1 , 16 , 19 , 20 , 27 ] , and to ensure “information-richness [ 15 ]. An iterative sampling approach is advised, in which data collection (e.g. five interviews) is followed by data analysis, followed by more data collection to find variants that are lacking in the current sample. This process continues until no new (relevant) information can be found and further sampling becomes redundant – which is called saturation [ 1 , 15 ] . In other words: qualitative data collection finds its end point not a priori , but when the research team determines that saturation has been reached [ 29 , 30 ].

This is also the reason why most qualitative studies use deliberate instead of random sampling strategies. This is generally referred to as “ purposive sampling” , in which researchers pre-define which types of participants or cases they need to include so as to cover all variations that are expected to be of relevance, based on the literature, previous experience or theory (i.e. theoretical sampling) [ 14 , 20 ]. Other types of purposive sampling include (but are not limited to) maximum variation sampling, critical case sampling or extreme or deviant case sampling [ 2 ]. In the above EVT example, a purposive sample could include all relevant professional groups and/or all relevant stakeholders (patients, relatives) and/or all relevant times of observation (day, night and weekend shift).

Assessors of qualitative research should check whether the considerations underlying the sampling strategy were sound and whether or how researchers tried to adapt and improve their strategies in stepwise or cyclical approaches between data collection and analysis to achieve saturation [ 14 ].

Good qualitative research is iterative in nature, i.e. it goes back and forth between data collection and analysis, revising and improving the approach where necessary. One example of this are pilot interviews, where different aspects of the interview (especially the interview guide, but also, for example, the site of the interview or whether the interview can be audio-recorded) are tested with a small number of respondents, evaluated and revised [ 19 ]. In doing so, the interviewer learns which wording or types of questions work best, or which is the best length of an interview with patients who have trouble concentrating for an extended time. Of course, the same reasoning applies to observations or focus groups which can also be piloted.

Ideally, coding should be performed by at least two researchers, especially at the beginning of the coding process when a common approach must be defined, including the establishment of a useful coding list (or tree), and when a common meaning of individual codes must be established [ 23 ]. An initial sub-set or all transcripts can be coded independently by the coders and then compared and consolidated after regular discussions in the research team. This is to make sure that codes are applied consistently to the research data.

Member checking

Member checking, also called respondent validation , refers to the practice of checking back with study respondents to see if the research is in line with their views [ 14 , 27 ]. This can happen after data collection or analysis or when first results are available [ 23 ]. For example, interviewees can be provided with (summaries of) their transcripts and asked whether they believe this to be a complete representation of their views or whether they would like to clarify or elaborate on their responses [ 17 ]. Respondents’ feedback on these issues then becomes part of the data collection and analysis [ 27 ].

Stakeholder involvement

In those niches where qualitative approaches have been able to evolve and grow, a new trend has seen the inclusion of patients and their representatives not only as study participants (i.e. “members”, see above) but as consultants to and active participants in the broader research process [ 31 , 32 , 33 ]. The underlying assumption is that patients and other stakeholders hold unique perspectives and experiences that add value beyond their own single story, making the research more relevant and beneficial to researchers, study participants and (future) patients alike [ 34 , 35 ]. Using the example of patients on or nearing dialysis, a recent scoping review found that 80% of clinical research did not address the top 10 research priorities identified by patients and caregivers [ 32 , 36 ]. In this sense, the involvement of the relevant stakeholders, especially patients and relatives, is increasingly being seen as a quality indicator in and of itself.

How not to assess qualitative research

The above overview does not include certain items that are routine in assessments of quantitative research. What follows is a non-exhaustive, non-representative, experience-based list of the quantitative criteria often applied to the assessment of qualitative research, as well as an explanation of the limited usefulness of these endeavours.

Protocol adherence

Given the openness and flexibility of qualitative research, it should not be assessed by how well it adheres to pre-determined and fixed strategies – in other words: its rigidity. Instead, the assessor should look for signs of adaptation and refinement based on lessons learned from earlier steps in the research process.

Sample size

For the reasons explained above, qualitative research does not require specific sample sizes, nor does it require that the sample size be determined a priori [ 1 , 14 , 27 , 37 , 38 , 39 ]. Sample size can only be a useful quality indicator when related to the research purpose, the chosen methodology and the composition of the sample, i.e. who was included and why.

Randomisation

While some authors argue that randomisation can be used in qualitative research, this is not commonly the case, as neither its feasibility nor its necessity or usefulness has been convincingly established for qualitative research [ 13 , 27 ]. Relevant disadvantages include the negative impact of a too large sample size as well as the possibility (or probability) of selecting “ quiet, uncooperative or inarticulate individuals ” [ 17 ]. Qualitative studies do not use control groups, either.

Interrater reliability, variability and other “objectivity checks”

The concept of “interrater reliability” is sometimes used in qualitative research to assess to which extent the coding approach overlaps between the two co-coders. However, it is not clear what this measure tells us about the quality of the analysis [ 23 ]. This means that these scores can be included in qualitative research reports, preferably with some additional information on what the score means for the analysis, but it is not a requirement. Relatedly, it is not relevant for the quality or “objectivity” of qualitative research to separate those who recruited the study participants and collected and analysed the data. Experiences even show that it might be better to have the same person or team perform all of these tasks [ 20 ]. First, when researchers introduce themselves during recruitment this can enhance trust when the interview takes place days or weeks later with the same researcher. Second, when the audio-recording is transcribed for analysis, the researcher conducting the interviews will usually remember the interviewee and the specific interview situation during data analysis. This might be helpful in providing additional context information for interpretation of data, e.g. on whether something might have been meant as a joke [ 18 ].

Not being quantitative research

Being qualitative research instead of quantitative research should not be used as an assessment criterion if it is used irrespectively of the research problem at hand. Similarly, qualitative research should not be required to be combined with quantitative research per se – unless mixed methods research is judged as inherently better than single-method research. In this case, the same criterion should be applied for quantitative studies without a qualitative component.

The main take-away points of this paper are summarised in Table 1 . We aimed to show that, if conducted well, qualitative research can answer specific research questions that cannot to be adequately answered using (only) quantitative designs. Seeing qualitative and quantitative methods as equal will help us become more aware and critical of the “fit” between the research problem and our chosen methods: I can conduct an RCT to determine the reasons for transportation delays of acute stroke patients – but should I? It also provides us with a greater range of tools to tackle a greater range of research problems more appropriately and successfully, filling in the blind spots on one half of the methodological spectrum to better address the whole complexity of neurological research and practice.

Availability of data and materials

Not applicable.

Abbreviations

Endovascular treatment

Randomised Controlled Trial

Standard Operating Procedure

Standards for Reporting Qualitative Research

Philipsen, H., & Vernooij-Dassen, M. (2007). Kwalitatief onderzoek: nuttig, onmisbaar en uitdagend. In L. PLBJ & H. TCo (Eds.), Kwalitatief onderzoek: Praktische methoden voor de medische praktijk . [Qualitative research: useful, indispensable and challenging. In: Qualitative research: Practical methods for medical practice (pp. 5–12). Houten: Bohn Stafleu van Loghum.

Chapter   Google Scholar  

Punch, K. F. (2013). Introduction to social research: Quantitative and qualitative approaches . London: Sage.

Kelly, J., Dwyer, J., Willis, E., & Pekarsky, B. (2014). Travelling to the city for hospital care: Access factors in country aboriginal patient journeys. Australian Journal of Rural Health, 22 (3), 109–113.

Article   Google Scholar  

Nilsen, P., Ståhl, C., Roback, K., & Cairney, P. (2013). Never the twain shall meet? - a comparison of implementation science and policy implementation research. Implementation Science, 8 (1), 1–12.

Howick J, Chalmers I, Glasziou, P., Greenhalgh, T., Heneghan, C., Liberati, A., Moschetti, I., Phillips, B., & Thornton, H. (2011). The 2011 Oxford CEBM evidence levels of evidence (introductory document) . Oxford Center for Evidence Based Medicine. https://www.cebm.net/2011/06/2011-oxford-cebm-levels-evidence-introductory-document/ .

Eakin, J. M. (2016). Educating critical qualitative health researchers in the land of the randomized controlled trial. Qualitative Inquiry, 22 (2), 107–118.

May, A., & Mathijssen, J. (2015). Alternatieven voor RCT bij de evaluatie van effectiviteit van interventies!? Eindrapportage. In Alternatives for RCTs in the evaluation of effectiveness of interventions!? Final report .

Google Scholar  

Berwick, D. M. (2008). The science of improvement. Journal of the American Medical Association, 299 (10), 1182–1184.

Article   CAS   Google Scholar  

Christ, T. W. (2014). Scientific-based research and randomized controlled trials, the “gold” standard? Alternative paradigms and mixed methodologies. Qualitative Inquiry, 20 (1), 72–80.

Lamont, T., Barber, N., Jd, P., Fulop, N., Garfield-Birkbeck, S., Lilford, R., Mear, L., Raine, R., & Fitzpatrick, R. (2016). New approaches to evaluating complex health and care systems. BMJ, 352:i154.

Drabble, S. J., & O’Cathain, A. (2015). Moving from Randomized Controlled Trials to Mixed Methods Intervention Evaluation. In S. Hesse-Biber & R. B. Johnson (Eds.), The Oxford Handbook of Multimethod and Mixed Methods Research Inquiry (pp. 406–425). London: Oxford University Press.

Chambers, D. A., Glasgow, R. E., & Stange, K. C. (2013). The dynamic sustainability framework: Addressing the paradox of sustainment amid ongoing change. Implementation Science : IS, 8 , 117.

Hak, T. (2007). Waarnemingsmethoden in kwalitatief onderzoek. In L. PLBJ & H. TCo (Eds.), Kwalitatief onderzoek: Praktische methoden voor de medische praktijk . [Observation methods in qualitative research] (pp. 13–25). Houten: Bohn Stafleu van Loghum.

Russell, C. K., & Gregory, D. M. (2003). Evaluation of qualitative research studies. Evidence Based Nursing, 6 (2), 36–40.

Fossey, E., Harvey, C., McDermott, F., & Davidson, L. (2002). Understanding and evaluating qualitative research. Australian and New Zealand Journal of Psychiatry, 36 , 717–732.

Yanow, D. (2000). Conducting interpretive policy analysis (Vol. 47). Thousand Oaks: Sage University Papers Series on Qualitative Research Methods.

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

van der Geest, S. (2006). Participeren in ziekte en zorg: meer over kwalitatief onderzoek. Huisarts en Wetenschap, 49 (4), 283–287.

Hijmans, E., & Kuyper, M. (2007). Het halfopen interview als onderzoeksmethode. In L. PLBJ & H. TCo (Eds.), Kwalitatief onderzoek: Praktische methoden voor de medische praktijk . [The half-open interview as research method (pp. 43–51). Houten: Bohn Stafleu van Loghum.

Jansen, H. (2007). Systematiek en toepassing van de kwalitatieve survey. In L. PLBJ & H. TCo (Eds.), Kwalitatief onderzoek: Praktische methoden voor de medische praktijk . [Systematics and implementation of the qualitative survey (pp. 27–41). Houten: Bohn Stafleu van Loghum.

Pv, R., & Peremans, L. (2007). Exploreren met focusgroepgesprekken: de ‘stem’ van de groep onder de loep. In L. PLBJ & H. TCo (Eds.), Kwalitatief onderzoek: Praktische methoden voor de medische praktijk . [Exploring with focus group conversations: the “voice” of the group under the magnifying glass (pp. 53–64). Houten: Bohn Stafleu van Loghum.

Carter, N., Bryant-Lukosius, D., DiCenso, A., Blythe, J., & Neville, A. J. (2014). The use of triangulation in qualitative research. Oncology Nursing Forum, 41 (5), 545–547.

Boeije H: Analyseren in kwalitatief onderzoek: Denken en doen, [Analysis in qualitative research: Thinking and doing] vol. Den Haag Boom Lemma uitgevers; 2012.

Hunter, A., & Brewer, J. (2015). Designing Multimethod Research. In S. Hesse-Biber & R. B. Johnson (Eds.), The Oxford Handbook of Multimethod and Mixed Methods Research Inquiry (pp. 185–205). London: Oxford University Press.

Archibald, M. M., Radil, A. I., Zhang, X., & Hanson, W. E. (2015). Current mixed methods practices in qualitative research: A content analysis of leading journals. International Journal of Qualitative Methods, 14 (2), 5–33.

Creswell, J. W., & Plano Clark, V. L. (2011). Choosing a Mixed Methods Design. In Designing and Conducting Mixed Methods Research . Thousand Oaks: SAGE Publications.

Mays, N., & Pope, C. (2000). Assessing quality in qualitative research. BMJ, 320 (7226), 50–52.

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 : Journal of the Association of American Medical Colleges, 89 (9), 1245–1251.

Saunders, B., Sim, J., Kingstone, T., Baker, S., Waterfield, J., Bartlam, B., Burroughs, H., & Jinks, C. (2018). Saturation in qualitative research: Exploring its conceptualization and operationalization. Quality and Quantity, 52 (4), 1893–1907.

Moser, A., & Korstjens, I. (2018). Series: Practical guidance to qualitative research. Part 3: Sampling, data collection and analysis. European Journal of General Practice, 24 (1), 9–18.

Marlett, N., Shklarov, S., Marshall, D., Santana, M. J., & Wasylak, T. (2015). Building new roles and relationships in research: A model of patient engagement research. Quality of Life Research : an international journal of quality of life aspects of treatment, care and rehabilitation, 24 (5), 1057–1067.

Demian, M. N., Lam, N. N., Mac-Way, F., Sapir-Pichhadze, R., & Fernandez, N. (2017). Opportunities for engaging patients in kidney research. Canadian Journal of Kidney Health and Disease, 4 , 2054358117703070–2054358117703070.

Noyes, J., McLaughlin, L., Morgan, K., Roberts, A., Stephens, M., Bourne, J., Houlston, M., Houlston, J., Thomas, S., Rhys, R. G., et al. (2019). Designing a co-productive study to overcome known methodological challenges in organ donation research with bereaved family members. Health Expectations . 22(4):824–35.

Piil, K., Jarden, M., & Pii, K. H. (2019). Research agenda for life-threatening cancer. European Journal Cancer Care (Engl), 28 (1), e12935.

Hofmann, D., Ibrahim, F., Rose, D., Scott, D. L., Cope, A., Wykes, T., & Lempp, H. (2015). Expectations of new treatment in rheumatoid arthritis: Developing a patient-generated questionnaire. Health Expectations : an international journal of public participation in health care and health policy, 18 (5), 995–1008.

Jun, M., Manns, B., Laupacis, A., Manns, L., Rehal, B., Crowe, S., & Hemmelgarn, B. R. (2015). Assessing the extent to which current clinical research is consistent with patient priorities: A scoping review using a case study in patients on or nearing dialysis. Canadian Journal of Kidney Health and Disease, 2 , 35.

Elsie Baker, S., & Edwards, R. (2012). How many qualitative interviews is enough? In National Centre for Research Methods Review Paper . National Centre for Research Methods. http://eprints.ncrm.ac.uk/2273/4/how_many_interviews.pdf .

Sandelowski, M. (1995). Sample size in qualitative research. Research in Nursing & Health, 18 (2), 179–183.

Sim, J., Saunders, B., Waterfield, J., & Kingstone, T. (2018). Can sample size in qualitative research be determined a priori? International Journal of Social Research Methodology, 21 (5), 619–634.

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Busetto, L., Wick, W. & Gumbinger, C. How to use and assess qualitative research methods. Neurol. Res. Pract. 2 , 14 (2020). https://doi.org/10.1186/s42466-020-00059-z

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Introduction to qualitative nursing research

This type of research can reveal important information that quantitative research can’t.

• Qualitative research is valuable because it approaches a phenomenon, such as a clinical problem, about which little is known by trying to understand its many facets.
• Most qualitative research is emergent, holistic, detailed, and uses many strategies to collect data.
• Qualitative research generates evidence and helps nurses determine patient preferences.

Research 101: Descriptive statistics

Differentiating research, evidence-based practice, and quality improvement

How to appraise quantitative research articles

All nurses are expected to understand and apply evidence to their professional practice. Some of the evidence should be in the form of research, which fills gaps in knowledge, developing and expanding on current understanding. Both quantitative and qualitative research methods inform nursing practice, but quantitative research tends to be more emphasized. In addition, many nurses don’t feel comfortable conducting or evaluating qualitative research. But once you understand qualitative research, you can more easily apply it to your nursing practice.

What is qualitative research?

Defining qualitative research can be challenging. In fact, some authors suggest that providing a simple definition is contrary to the method’s philosophy. Qualitative research approaches a phenomenon, such as a clinical problem, from a place of unknowing and attempts to understand its many facets. This makes qualitative research particularly useful when little is known about a phenomenon because the research helps identify key concepts and constructs. Qualitative research sets the foundation for future quantitative or qualitative research. Qualitative research also can stand alone without quantitative research.

Although qualitative research is diverse, certain characteristics—holism, subjectivity, intersubjectivity, and situated contexts—guide its methodology. This type of research stresses the importance of studying each individual as a holistic system (holism) influenced by surroundings (situated contexts); each person develops his or her own subjective world (subjectivity) that’s influenced by interactions with others (intersubjectivity) and surroundings (situated contexts). Think of it this way: Each person experiences and interprets the world differently based on many factors, including his or her history and interactions. The truth is a composite of realities.

Qualitative research designs

Because qualitative research explores diverse topics and examines phenomena where little is known, designs and methodologies vary. Despite this variation, most qualitative research designs are emergent and holistic. In addition, they require merging data collection strategies and an intensely involved researcher. (See Research design characteristics .)

Although qualitative research designs are emergent, advanced planning and careful consideration should include identifying a phenomenon of interest, selecting a research design, indicating broad data collection strategies and opportunities to enhance study quality, and considering and/or setting aside (bracketing) personal biases, views, and assumptions.

Many qualitative research designs are used in nursing. Most originated in other disciplines, while some claim no link to a particular disciplinary tradition. Designs that aren’t linked to a discipline, such as descriptive designs, may borrow techniques from other methodologies; some authors don’t consider them to be rigorous (high-quality and trustworthy). (See Common qualitative research designs .)

Sampling approaches

Sampling approaches depend on the qualitative research design selected. However, in general, qualitative samples are small, nonrandom, emergently selected, and intensely studied. Qualitative research sampling is concerned with accurately representing and discovering meaning in experience, rather than generalizability. For this reason, researchers tend to look for participants or informants who are considered “information rich” because they maximize understanding by representing varying demographics and/or ranges of experiences. As a study progresses, researchers look for participants who confirm, challenge, modify, or enrich understanding of the phenomenon of interest. Many authors argue that the concepts and constructs discovered in qualitative research transcend a particular study, however, and find applicability to others. For example, consider a qualitative study about the lived experience of minority nursing faculty and the incivility they endure. The concepts learned in this study may transcend nursing or minority faculty members and also apply to other populations, such as foreign-born students, nurses, or faculty.

Qualitative nursing research can take many forms. The design you choose will depend on the question you’re trying to answer.

A sample size is estimated before a qualitative study begins, but the final sample size depends on the study scope, data quality, sensitivity of the research topic or phenomenon of interest, and researchers’ skills. For example, a study with a narrow scope, skilled researchers, and a nonsensitive topic likely will require a smaller sample. Data saturation frequently is a key consideration in final sample size. When no new insights or information are obtained, data saturation is attained and sampling stops, although researchers may analyze one or two more cases to be certain. (See Sampling types .)

Some controversy exists around the concept of saturation in qualitative nursing research. Thorne argues that saturation is a concept appropriate for grounded theory studies and not other study types. She suggests that “information power” is perhaps more appropriate terminology for qualitative nursing research sampling and sample size.

Data collection and analysis

Researchers are guided by their study design when choosing data collection and analysis methods. Common types of data collection include interviews (unstructured, semistructured, focus groups); observations of people, environments, or contexts; documents; records; artifacts; photographs; or journals. When collecting data, researchers must be mindful of gaining participant trust while also guarding against too much emotional involvement, ensuring comprehensive data collection and analysis, conducting appropriate data management, and engaging in reflexivity.

Data usually are recorded in detailed notes, memos, and audio or visual recordings, which frequently are transcribed verbatim and analyzed manually or using software programs, such as ATLAS.ti, HyperRESEARCH, MAXQDA, or NVivo. Analyzing qualitative data is complex work. Researchers act as reductionists, distilling enormous amounts of data into concise yet rich and valuable knowledge. They code or identify themes, translating abstract ideas into meaningful information. The good news is that qualitative research typically is easy to understand because it’s reported in stories told in everyday language.

Evaluating a qualitative study

Evaluating qualitative research studies can be challenging. Many terms—rigor, validity, integrity, and trustworthiness—can describe study quality, but in the end you want to know whether the study’s findings accurately and comprehensively represent the phenomenon of interest. Many researchers identify a quality framework when discussing quality-enhancement strategies. Example frameworks include:

• Trustworthiness criteria framework, which enhances credibility, dependability, confirmability, transferability, and authenticity
• Validity in qualitative research framework, which enhances credibility, authenticity, criticality, integrity, explicitness, vividness, creativity, thoroughness, congruence, and sensitivity.

With all frameworks, many strategies can be used to help meet identified criteria and enhance quality. (See Research quality enhancement ). And considering the study as a whole is important to evaluating its quality and rigor. For example, when looking for evidence of rigor, look for a clear and concise report title that describes the research topic and design and an abstract that summarizes key points (background, purpose, methods, results, conclusions).

Application to nursing practice

Qualitative research not only generates evidence but also can help nurses determine patient preferences. Without qualitative research, we can’t truly understand others, including their interpretations, meanings, needs, and wants. Qualitative research isn’t generalizable in the traditional sense, but it helps nurses open their minds to others’ experiences. For example, nurses can protect patient autonomy by understanding them and not reducing them to universal protocols or plans. As Munhall states, “Each person we encounter help[s] us discover what is best for [him or her]. The other person, not us, is truly the expert knower of [him- or herself].” Qualitative nursing research helps us understand the complexity and many facets of a problem and gives us insights as we encourage others’ voices and searches for meaning.

When paired with clinical judgment and other evidence, qualitative research helps us implement evidence-based practice successfully. For example, a phenomenological inquiry into the lived experience of disaster workers might help expose strengths and weaknesses of individuals, populations, and systems, providing areas of focused intervention. Or a phenomenological study of the lived experience of critical-care patients might expose factors (such dark rooms or no visible clocks) that contribute to delirium.

Successful implementation

Qualitative nursing research guides understanding in practice and sets the foundation for future quantitative and qualitative research. Knowing how to conduct and evaluate qualitative research can help nurses implement evidence-based practice successfully.

When evaluating a qualitative study, you should consider it as a whole. The following questions to consider when examining study quality and evidence of rigor are adapted from the Standards for Reporting Qualitative Research.

Jennifer Chicca is a PhD candidate at the Indiana University of Pennsylvania in Indiana, Pennsylvania, and a part-time faculty member at the University of North Carolina Wilmington.

Amankwaa L. Creating protocols for trustworthiness in qualitative research. J Cult Divers. 2016;23(3):121-7.

Cuthbert CA, Moules N. The application of qualitative research findings to oncology nursing practice. Oncol Nurs Forum . 2014;41(6):683-5.

Guba E, Lincoln Y. Competing paradigms in qualitative research . In: Denzin NK, Lincoln YS, eds. Handbook of Qualitative Research. Thousand Oaks, CA: SAGE Publications, Inc.;1994: 105-17.

Lincoln YS, Guba EG. Naturalistic Inquiry . Thousand Oaks, CA: SAGE Publications, Inc.; 1985.

Munhall PL. Nursing Research: A Qualitative Perspective . 5th ed. Sudbury, MA: Jones & Bartlett Learning; 2012.

Nicholls D. Qualitative research. Part 1: Philosophies. Int J Ther Rehabil . 2017;24(1):26-33.

Nicholls D. Qualitative research. Part 2: Methodology. Int J Ther Rehabil . 2017;24(2):71-7.

Nicholls D. Qualitative research. Part 3: Methods. Int J Ther Rehabil . 2017;24(3):114-21.

O’Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for reporting qualitative research: A synthesis of recommendations. Acad Med . 2014;89(9):1245-51.

Polit DF, Beck CT. Nursing Research: Generating and Assessing Evidence for Nursing Practice . 10th ed. Philadelphia, PA: Wolters Kluwer; 2017.

Thorne S. Saturation in qualitative nursing studies: Untangling the misleading message around saturation in qualitative nursing studies. Nurse Auth Ed. 2020;30(1):5. naepub.com/reporting-research/2020-30-1-5

Whittemore R, Chase SK, Mandle CL. Validity in qualitative research. Qual Health Res . 2001;11(4):522-37.

Williams B. Understanding qualitative research. Am Nurse Today . 2015;10(7):40-2.

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Qualitative evaluation in nursing interventions—A review of the literature

Kristine rørtveit.

1 Department of Research, Nursing and Healthcare Research Group, Stavanger University Hospital, Stavanger Norway

Britt Saetre Hansen

Kirsten lode, elisabeth severinsson, associated data.

To identify and synthesize qualitative evaluation methods used in nursing interventions.

A systematic qualitative review with a content analysis. Four databases were used: MEDLINE, PsycINFO, Embase and CINAHL using pre‐defined terms. The included papers were published from 2014–2018.

We followed the guidelines of Dixon‐Woods et al., Sandelowski and Barroso, the Critical Appraisal Skills Programme qualitative checklist and The Confidence in the Evidence from Reviews of Qualitative Research Approach.

Of 103 papers, 15 were eligible for inclusion. The main theme Challenging complexity by evaluating qualitatively described processes and characteristics of qualitative evaluation. Two analytic themes emerged: Evaluating the implementation process and Evaluating improvements brought about by the programme.

Different qualitative evaluation methods in nursing are a way of documenting knowledge that is difficult to illuminate in natural settings and make an important contribution when determining the pros and cons of an intervention.

1. INTRODUCTION

During the last decade, there has been an ongoing discussion on the topic of developing and evaluating complex nursing interventions. Nursing interventions can be evaluated qualitatively, as this method enhances the significance of clinical trials and emphasizes the distinctive work and outcomes of nursing care (Sandelowski,  1996 ). However, there are few examples of detailed methodological strategies for doing so (Schumacher et al.,  2005 ). Evaluation is a positive pursuit as it provides an organization with knowledge of how to improve or verify the value of services and how to determine which elements are strong and which are in need of improvement (Stufflebeam & Shinkfield,  2007 ). Nurses should therefore develop and implement strategies aimed at creating professional practice, and furthermore, such strategies should include designing and implementing performance measurement systems (McDavid & Huse,  2006 ). Morse, Penrod, and Hupcey ( 2000 ) describes Qualitative Outcome Analysis (QOA) as a method for qualitatively identifying intervention strategies and evaluating the implementation outcomes of patient‐oriented interventions.

1.1. Background

Clinical nursing is complex, and nurses need to understand the complexity of evaluation to improve their practice. The term “complex intervention” is widely used in the academic health literature to describe both health service and public health interventions. Complex interventions are defined as consisting of several components, which can act either independently or interdependently (Campbell et al.,  2007 ; Mohler, Bartoszek, Kopke, & Meyer,  2012 , p. 455). A complex intervention is characterized by several interacting components in several dimensions such as the behaviour required by the persons involved, the number of groups or levels in the organization, variability of outcomes and/or the degree of intervention flexibility (Craig et al.,  2008 ).

The choice of evaluation method must be determined by its appropriateness for the purpose and intended use (Patton,  2015 ). Qualitative methods provide those who make decisions about the follow‐up of an intervention with access to a deeper understanding of the participants' experiences and perceptions of the intervention that goes beyond numbers and statistics (Patton,  2015 ). There are few studies about nursing intervention evaluation methods that describe the formal documentation of the content and delivery of a specific intervention in greater detail (Michie, Fixsen, Grimshaw, & Eccles,  2009 ) or factors that influence improvement in clinical nursing. Michie et al. ( 2009 , p. 3) describe eight aspects that are essential in healthcare implementation: the content of the intervention, characteristics of those delivering the intervention, characteristics of the recipients, characteristics of the setting, the mode of delivery, the intensity (e.g. contact time), the duration (e.g. number of sessions over a given period) and adherence to delivery protocols. This is in accordance with Craig et al. ( 2008 ), who argue for several aspects necessary of development and evaluation: a good theoretical understanding, implementation problems, level processes, the range of measures and strict fidelity. Thus, we expand on the existing knowledge of complex interventions by searching for studies using qualitative evaluation methods to demonstrate a variety of methods used in relation to nursing evaluation and in the following we identify and synthesize the qualitative evidence of which research methods are applied when nursing interventions are evaluated.

2. THE REVIEW

To identify and synthesize qualitative evaluation methods used in nursing interventions. The review question addressed was: What characterizes the qualitative methods applied in evaluating the implementation of nursing interventions and improvements?

2.2. Design

A systematic literature review was conducted (Dixon‐Woods, Agarwal, Jones, Young, & Sutton,  2005 ; Hansen et al.,  2012 ) on qualitative studies providing knowledge methods used in qualitative evaluation in the clinical nursing field. The qualitative review guidelines for assessing the quality of evidence presented by Sandelowski and Barroso (Sandelowski & Barroso,  2007 ) were adhered to.

2.3. Search method

A systematic search was carried out in MEDLINE, PsycINFO and Embase in October 2018. An additional search was performed in CINAHL to identify articles with nursing perspectives. Articles published in the previous 5 years (from January 2014) were included. The following search terms were used: qualitative evaluation, method* or tool* or model* or process* or strateg* or criteria or plan*, nurs* and implement* or improve* or intervention* or practice* or programme, patient*.

2.4. Search outcomes

The initial search revealed 103 articles, of which 40 were excluded due to being duplicates, 13 for not using a qualitative research method and 12 for other reasons such as not being performed by nurses, not involving nursing in the intervention or not involving patients. Appendix I shows the details and describes the identification process in accordance with PRISMA (Moher, Liberati, Tetzlaff, & Altman,  2009 ).

2.5. Inclusion and exclusion criteria

The searches were limited to peer‐reviewed journal articles in the English language on qualitative research methods applied in the evaluation of nursing interventions for adult patients (<18+ years) published within the previous 5 years. The narrow inclusion criteria stipulated articles focusing on nursing interventions in the clinical context and were from different hospital settings and community care. Articles on the family perspective, students' perspective and those employing mixed methods were excluded.

A total of 15 articles fulfilled the narrow inclusion criteria and were deemed appropriate for the review in addition to being relevant for illuminating the topics addressed by the review question. The Preferred Reporting Items for Systematic Reviews and Meta‐Analyses (Moher et al.,  2009 ; PRISMA,  2018 ) and the Critical Appraisal Skills Programme (CASP,  2018 ) were used to structure the review process. The PRISMA flow diagram shows the selection process ( Appendix I ).

2.6. Quality appraisal and data extraction

Each article was initially critically appraised by two reviewers independently followed by a discussion among all five nurse researchers who finally reached consensus. All the included articles were quality checked in accordance with the checklist (CASP,  2018 ), see Appendix II and were sorted by study aim, intervention and context, method, results, qualitative evaluation and why it was performed as shown in Table  1 .

Overview of included papers

Abbreviations: AVERT, A Very Early Rehabilitation Trial; CCM, chronic care model; CMNs, certified nurse midwives; COPD, chronic obstructive pulmonary disease; DD, dementia disease; GP, general practitioner; ICU, intensive care unit; PN, practice nurses; RCT, randomized controlled trials; RN, Registered Nurses; SAM, Systematic Activation Method; VM, validation method.

2.7. Review

The qualitative review adhered to (Sandelowski & Barroso,  2007 ). The analysis was performed by a thorough reading and rereading of the articles (Dixon‐Woods et al.,  2006 ). The data were analysed stepwise following a manifest content analysis technique (Graneheim & Lundman,  2004 ). After each article had been thoroughly assessed, they were sorted and summarized. In the analysis process, the text describing the evaluation method was considered to constitute the meaning units (Graneheim & Lundman,  2004 ). The meaning units were then coded and thematized as groups of content that shared a similar meaning. The qualitative evaluation method was reflected on, discussed and finally formulated into one theme and three sub‐themes. The sub‐themes helped to describe the identified factors. The main theme and sub‐themes were created by abstraction of the categorized meaning units in a process involving all the authors. Various alternatives were discussed by the authors to reach consensus on the sorting and labelling. Research Ethics Committee approval was not required.

3.1. Characteristic of the studies

Of 103 papers, 15 were eligible for inclusion (Baron et al.,  2018 ; Bolmsjo, Edberg, & Andersson,  2014 ; Clignet, van Meijel, van Straten, & Cuijpers,  2017 ; Davisson & Swanson,  2018 ; Furler et al., 2014 ; Graves, Garrett, Amiel, Ismail, & Winkley,  2016 ; Hahne, Lundstrom, Levealahti, Winnhed, & Ohlen,  2017 ; Halcomb et al.,  2015 ; Hanifa, Glaeemose, & Laursen,  2018 ; Helmle, Edwards, Kushniruk, & Borycki,  2018 ; Hill et al.,  2016 ; Iyer, Koziel, & Langhan,  2015 ; Kang, Moyle, Cooke, & O'Dwyer,  2017 ; Luker et al.,  2016 ; Soderlund, Cronqvist, Norberg, Ternestedt, & Hansebo,  2016 ) and the PRISMA flow diagram shows the selection process ( Appendix I I). The 15 included articles are presented in Table 1 , and there is an example of the questions, while Appendix II contains the criteria from the CASP checklist. Overall, we found that the included articles had a high score, although adequate consideration of the relationship between the researcher and participants was lacking in several articles. The most common methodology was interviews, either individual or in focus groups. Educational programmes were the most frequently used intervention, and thematic analysis was the methodology most often employed. Two analytic themes emerged: Evaluating the implementation process and Evaluating improvements brought about by the programme (Table 2 ). One main theme was developed from this process: Challenging complexity by evaluating qualitatively . The main theme outlined how the design of an evaluation of the intervention was influenced by the inherent complexity.

3.2. Theme 1: Evaluating the implementation process

This theme described the different types of evaluation design used in the implementation processes, data characteristics and context as well as types and models of analysis.

3.2.1. Different types of designs

The theme different types of design was based on the sub‐category aims and types of data , where we found a great variation in the descriptions employed. Some of the studies aimed to report and evaluate the intervention from the staff perspectives , while others described and evaluated the patients' perspectives or reported both perspectives (Baron et al.,  2018 ). Changes associated with the interventions were examined by some, while others explored experiences of care or evaluated experiences and perceptions of an intervention. Several of the aims concerned contributing to a deeper knowledge in staff members' daily practice; to better understand their experiences and explore perceptions and perspectives of an intervention (Graves et al.,  2016 ; Iyer et al.,  2015 ; Luker et al.,  2016 ). Other examples from staff members' perspectives aimed at exploring the use of drama as a tool (Bolmsjo et al.,  2014 ) or developing a model of care (Furler et al.,  2014 ).

Examples of more detailed formulations of the aims were: to improve a programme (Davisson & Swanson,  2018 ), evaluate a programme's impact on staff's knowledge and attitude (Kang et al.,  2017 ) or to evaluate effect on practice (Helmle et al.,  2018 ). Some studies aimed to evaluate the effect of workflow and practice and to examine the strength and weaknesses of a programme (Helmle et al.,  2018 ; Kang et al.,  2017 ). The various aims demonstrated ways of detecting the knowledge sought by the evaluation, and all of them were grounded in a design with a qualitative tradition.

The types of data pointed to a variety of different data collection methods in qualitative evaluations. They all included some form of in‐depth interviews, and semi‐structured interviews were common (Baron et al.,  2018 ; Graves et al.,  2016 ; Halcomb et al.,  2015 ; Hanifa et al.,  2018 ; Helmle et al.,  2018 ; Luker et al.,  2016 ). Several studies employed one or several focus group interviews (Baron et al.,  2018 ; Bolmsjo et al.,  2014 ; Furler et al.,  2014 ; Hahne et al.,  2017 ; Hill et al.,  2016 ), and there were several examples of combined methods, such as evaluation interviews, focus group and telephone interviews (Furler et al.,  2014 ), telephone interviews, voice Internet or face to face (Luker et al.,  2016 ), observations and tape recordings during sessions, focus group interview and written reflections (Bolmsjo et al.,  2014 ). Other examples of data collection were related to the time the data were collected: for instance, a process evaluation conducted by means of qualitative data collected 3 and 12 months postintervention (Furler et al.,  2014 ).

We found no explicit explanations of or reflections on why the specific design was chosen in any of the articles, although an implicit understanding was present.

3.2.2. Data characteristics and context

The different data and context of problems pertaining to the evaluations varied, illuminating the range of fields where qualitative evaluation methods can be valuable in an implementation process. This category describes the types of setting, problem and diagnosis. The data represent a variety of clinical settings and were collected in natural healthcare contexts. Several evaluations were performed in a typical somatic hospital setting such as acute stroke, paediatric, surgical ICU or obstetric departments (Baron et al.,  2018 ; Hahne et al.,  2017 ; Hanifa et al.,  2018 ; Iyer et al.,  2015 ; Luker et al.,  2016 ). In addition, community settings such as elder and dementia care (Bolmsjo et al.,  2014 ) and diabetes care (Furler et al.,  2014 ) were evaluated. The settings of the various studies represented different clinical contexts; acute and emergency care, long‐term care and general practice, community settings and hospital units, all of which were representative of a complex intervention .

3.2.3. Types and models of analysis

All the reviewed articles presented established models of analysis in the methodological section, which provided a detailed description of how the analysis was performed. In addition to traditional qualitative analysis, the articles described more advanced models of analysis such as thematic content analysis, the hermeneutic phenomenological approach, grounded theory, conventional inductive content analysis (Clignet et al.,  2017 ; Hanifa et al.,  2018 ; Iyer et al.,  2015 ) and several forms of content analysis. This summary shows the variety of methods that can be chosen.

The question of whether the evaluation of the detailed intervention was performed inductively or deductively was addressed in some of the articles (Bolmsjo et al.,  2014 ; Furler et al.,  2014 ; Iyer et al.,  2015 ; Luker et al.,  2016 ) but only when explicitly stating that an inductive approach was used. In several of the studies, it seemed as if the reason for choosing a qualitative design was to capture the complexity.

3.3. Theme 2: Evaluating improvements brought about by the programme

This theme analyses the improvements as they were described in the studies that is, the intervention process; types of intervention and characteristics of those who deliver the intervention. The implementation processes were complex, but the qualitative analysis and highlights of the articles made the outcome of the interventions visible.

3.3.1. Clinical benefits

The outcomes were connected to the clinical benefits . For instance, important themes that provided more insight into clinical implementation in complex care settings were described (Luker et al.,  2016 ). These included the fact that the implementation required extra work but was rewarding; that team practices changed; that challenges such as the lack of established interdisciplinary teamwork and inadequate staffing levels arose at some sites; that there were various organizational barriers, the impact of staff attitudes and beliefs and patient‐related barriers; and that enthusiastic team leadership was crucial for success. Another example was described by Clignet et al. ( 2017 ), who studied the implementation process to find which implementation factors are most relevant to this population and to identify facilitators and barriers relating to the characteristics and contextual factors of patients and nurses (Clignet et al.,  2017 ).

One study revealed that although the participants considered the intervention safe, they did not use it (Iyer et al.,  2015 ). Another result revealed that the intervention could be a means to enhance reflection on daily caring practice among nursing staff (Bolmsjo et al.,  2014 ), while one found that the RN led model increased patient satisfaction and gave RNs greater autonomy (Baron et al.,  2018 ). Positive changes in palliative care were described, such as working methods, team collaboration, collegial support, discussions about diagnosis, symptoms at the end of life and the patient's family members (Hahne et al.,  2017 ). Involving relatives was found to be essential in the rehabilitation of former intensive care patients (Hanifa et al.,  2018 ). A study on fall prevention described that an education programme created a positive culture whereby patients and staff worked together to address falls prevention and gained awareness about creating a safe ward environment (Hill et al.,  2016 ).

The study on a 1‐year training programme on validation communication for nurses described the reactions of patients with dementia and found that actions such as not treating the patient as an adult constitute a barrier to communication or talking more freely about what is on one's mind (Soderlund et al.,  2016 ). In one study on a care model for insulin initiation, a long‐standing relationship with and knowledge of patients was described as essential for providing information, education and addressing concerns in a timely manner that suited patients (Furler et al.,  2014 ). In a study on psychological skill training to support patients with diabetes‐2, nurses described a sense of overstepping their professional role when dealing with emotive consultations as they did not feel qualified and had to adjust their role to facilitate the use of the new skills (Graves et al.,  2016 ).

One article described how important the chronic disease management programme was despite a lack of commitment to it. There was an overreliance on coordinators to manage all aspects of the programme and that more efficient communication was necessary when identifying appropriate patients to refer to the programme (Davisson & Swanson,  2018 ). We found that the outcome in all articles was of benefit to clinical practice, despite the fact that no numerical or statistical data were presented.

3.3.2. Types of intervention

As we did not limit the type of clinical implementation when selecting the articles, the types of intervention included in this review were broad. The models and programmes implemented were thoroughly described in the articles. Most of the interventions comprised programmes involving models or guidelines such as drama as a tool (Bolmsjo et al.,  2014 ) and the care model for insulin initiation (Furler et al.,  2014 ). Few of the studies described procedures in detail, with the exception of one study on sedation during the capnography procedure (Iyer et al.,  2015 ). The patient nurse perspective and the intensity and duration of the intervention were thoroughly described in each article. The utility of the intervention and why such interventions were necessary were also outlined.

3.3.3. Characteristics of those who deliver the intervention

In the articles, several professional categories were involved in the implementation process and described in accordance with the mode of delivery and the organizational level of the intervention. Some articles involved only nursing staff, either with one specified nursing specialty or with different types of nursing specialty . Other articles described a multidisciplinary combination of nurses and other professionals, for instance physiotherapists, personal trainer assistants and speech pathologists, paediatric emergency medicine professionals, general practitioners (GPs) and endocrinologists (Furler et al.,  2014 ; Iyer et al.,  2015 ; Luker et al.,  2016 ).

The organizational level did not vary as much as the professional categories. However, some of the articles combined more than one unit, for instance several clinical units for old age psychiatry, adult care facilities or different medical wards in a regional hospital (Clignet et al.,  2017 ; Helmle et al.,  2018 ; Kang et al.,  2017 ). The evaluation studies were performed in their natural setting, and the mode and description of the delivery and the organizational level of the intervention provided important information that illuminated the complexity of the actual clinical setting.

4. DISCUSSION

The aim of this review was to identify and synthesize qualitative evaluation methods used in nursing interventions, and the review question was What characterizes the qualitative methods applied in evaluating the implementation of nursing interventions and improvements? This review illuminates how evaluating the implementation of nursing interventions and improvements i s challenging because of the complexity involved, which is described by the variety of different methods included in the qualitative evaluation of interventions. The review states that different perspectives of the qualitative evaluation designs highlight the variation and benefits of such evaluation.

The implementation process perspective illuminates the obvious reasons for performing the actual evaluation based on the design, the problems revealed, and the analysis methods employed. The evaluation perspective demonstrates how improvements based on concrete benefits are crucial. The actual evaluation of the intervention shows the importance of thorough descriptions of the implementation strategies, those who deliver the intervention and the level of the activity.

From the methodological perspective, we were surprised to detect such different modes and creative ways of handling the need to evaluate complex situations in clinical practice. Although several of the included articles aim to explore , we hold that the concept exploring experiences is continuous and needs to be considered a little further. According to van Manen, qualitative methods explore a variety of issues such as empirical questions or perceptions (p. 811). Qualitative methodology focuses on individuals, and the clinical evaluations as unique examples are under the spotlight in the current review. Therefore, What ‐questions are crucial as they provide insight. However, only a few articles explicitly aimed to gain insight. The concept explore is typically used in phenomenological approaches, but only one article in the present review claims to adopt a hermeneutic phenomenological approach; as the authors study the patients' perspective they combine observations, interviews and a hermeneutic phenomenological approach to analyse the data (Hanifa et al.,  2018 ). The original meaning of a phenomenon is captured by phenomenology; to bring experience we lived through to our awareness retrospectively; and to be able to reflect on the lived meaning of the experience (van Manen,  2017 ). While these approaches may be of benefit, they are more commonly used in studies at a theoretical level than the empirical studies included in the present review. It is obvious that the data collection method is guided by the research question. However, our review also reveals that the clinical field influences how the data are collected and analysed and that the method may lead to new methods for evaluating clinics.

In the qualitative evaluation checklist guidelines, Patton ( 2015 ) emphasizes the importance of the evaluator's knowledge of methodological issues and preparedness to argue for the credibility of the findings. Qualitative evaluations are most often performed in accordance with established methodological guidelines. According to Patton ( 2015 ), the quality of qualitative data and analysis depends on skilful interviews, systematic and rigorous observations as well as the sensitivity and integrity of the evaluator (Patton,  2015 ).

Our review detected that content analysis is common. According to Graneheim, Lindgren, and Lundman ( 2017 ), qualitative content analysis typically focuses on subject and context. It emphasizes variation and offers opportunities to perform a manifest descriptive and latent interpretative content analysis (Graneheim & Lundman,  2004 ). Research using qualitative content analysis is grounded in ontological assumptions, epistemology and methodology. It is important to be aware that the ontological assumptions are open and may vary according to the researchers' standpoint. Another explicit issue is that the epistemological basis of qualitative content analysis should guide the way that data are interpreted: as cocreations of the interviewee and the interviewer. Furthermore, the interpretation method is viewed as a cocreation of the researchers and the text. Graneheim et al. ( 2017 ) state that one methodological issue is the difficulties involved in keeping the levels of abstraction and degree of interpretation logical and congruent throughout the analysis and presentation (Graneheim et al.,  2017 ).

In the 1990s, Sandelowski ( 1996 ) viewed qualitative methods as the antithesis of clinical research and “far removed from the immediate practical aims of intervention studies and nursing practice” (Sandelowski,  1996 , p. 359). However, today we see that such methods not only benefit clinical studies, but are needed to explore, illuminate and describe the variation in the phenomenon to evaluate nursing interventions in their real‐life contexts. Therefore, we believe that the vast number of different methods in the selected articles needs to be outlined and further developed so that such methods will become more common when evaluating in different clinical contexts.

From the intervention perspective , the included articles are based on complex interventions (Mohler et al.,  2012 ). Qualitative evaluations seem appropriate when knowledge about the process of testing tools or information about established programmes is needed. It appears to be correct to evaluate any type of intervention qualitatively if the aim is the above‐mentioned knowledge. This supports arguments that the type of evaluative approach is decided by the research question, not the type of intervention.

Another important aspect is whether the intervention is designed ahead of the actual project or whether existing methods or models are to be evaluated. The former adheres to an inductive approach—when the evaluation looks for knowledge derived from the actual practice. According to Graneheim et al. ( 2017 ), such an approach is data‐ or text‐driven and characterized by a search for patterns through similarities and differences. This type of analysis is described in categories and/or themes, and the levels of abstraction and interpretation vary. Using the inductive approach, the researcher moves “from the data to a theoretical understanding—from the concrete and specific to the abstract and general” (Graneheim et al.,  2017 ). One important issue that must be addressed when employing an inductive approach is the researchers' pre‐understanding. The question that arises is whether the inductive approach is merely a result of the researchers' pre‐understanding of the studied phenomena. The challenge, according to Graneheim et al. ( 2017 ), is to avoid surface descriptions and general summaries when using an inductive approach. A deductive model is employed when data are interpreted through concepts, a model or a theory, and implications about the studied phenomenon are tested against the collected data. In these designs, the researchers move explicitly from theory to data. The challenge, according to Graneheim et al. ( 2017 ), is to avoid formulating categories that are exclusively based on established theory or models and the handling of left‐over data. The latter occurs when data are found that do not fit the explanatory model (Graneheim et al.,  2017 ).

The articles included in the present review provide a detailed description of the intervention they evaluated. According to Michie et al. ( 2009 ), formal documentation describing the content and delivery of an intervention will help to inform about what to teach new practitioners, how to transform or reorganize healthcare processes and what to include in the assessment of practitioner performance. These are all key features of successful implementation (Michie et al.,  2009 ).

Characteristics of those who deliver the intervention and characteristics that make interventions complex are the different professional categories or varying organizational levels targeted by the intervention (context of the intervention) and/or a need to tailor the intervention to specific settings (flexibility of the intervention) (Mohler et al.,  2012 ). Despite that one narrow inclusion criterion focuses on nursing interventions in a clinical context, we typically find a combination of multiple professional categories delivering nursing interventions in the included articles. Michie et al. ( 2009 ) state that description of the characteristics of the setting and of those who deliver an intervention is essential for replicating an implementation strategy.

Intervention level activity is presented as high‐level activity with multiple phases and settings. The need to tailor the intervention to specific settings seems to be the most complex component in the included articles as the evaluations were performed in a natural setting and developed by an actual need in the clinics.

Central questions in the field of evaluating complex interventions are how these interventions work in clinical practice? What are their active components? And are they effective? The answers to such questions will enable new and more effective interventions across multidisciplinary teams in live practice (Michie & Abraham,  2004 ). The Criteria for Reporting the Development and Evaluation of Complex Interventions in healthcare (CReDECI) may be of use for addressing evaluation (Craig et al.,  2008 ). In contrast to most reporting guidelines, the CReDECI does not offer criteria for a specific study design, but on the process of developing, piloting and evaluating complex interventions (Craig et al.,  2008 ).

Planning is crucial for the implementation of an intervention. According to Morse (Morse et al.,  2000 ), by examining current practice by means of QOA, researchers can contribute to generating increased clinical knowledge. This kind of evaluation can provide a detailed description of local processes in an intervention programme. Morse et al. ( 2000 ) claims that QOA may bridge the gap between research and practice. The same could probably be said about the qualitative evaluation method, as it may bring nursing research and practice closer together, and qualitative research methods more accurately describe complex nursing practice. Furthermore, Morse et al. ( 2000 ) emphasizes that as nursing is a practice‐based discipline, the development of QOA methodology is critical. We genuinely believe that the same applies to the qualitative evaluation method, which often highlights experiences of a process. As nursing practice is comprehensive and individual, these important characteristics should be emphasized when evaluating it.

The implementation method requires thorough planning, and we assume that such planning is common in clinical nursing. However, the planning of the evaluation seems to be less important compared with the planning of the actual implementation. This may be a result of a dynamic, real‐life situation, which is very much dependent on resources. However, if a new intervention is not evaluated, how will we know what effect it has? We assume that qualitative evaluation is performed at a clinical level—those who receive the intervention are observed and asked at an open level: what was your experience of this intervention? We suggest that these evaluations should be systemized; the responses to open‐ended questions can be collected and analysed with the aim of improving practice. Continuous evaluation during the implementation process is crucial for success.

4.1. Strengths and limitations

The strengths and limitations were assessed by the Confidence in the Evidence from Reviews of Qualitative Research Approach (CERQual) (Lewin et al.,  2015 ), which helps assess the confidence in qualitative reviews. CERQual comprises four components, which contribute to assessment of confidence: methodological considerations, relevance, coherence and adequacy of data. We believe that we have thoroughly described the relevance, coherence and adequacy of the data by documenting the review process, the body of evidence and outlining the primary studies. The methodological considerations are the extent to which potential problems in the design are reflected on. The five nurse researchers who conducted the/present review worked in different areas at a University hospital on the West coast of Norway and represent different clinical nursing contexts. We consider this a strength, as we based the analysis and discussion section on rich and deep reflection resulting in the understanding of the review question.

Despite that mixed method evaluations are available, the present review only included qualitative studies. Such a design would illuminate other aspects of evaluation than/that were not a part of the present study.

5. CONCLUSION

This review presents a summary of different ways to perform qualitative evaluation in a range of clinical nursing areas and illuminates the complexity involved in evaluation of interventions in naturalistic settings. To the best of our knowledge, no previous review has focused on qualitative evaluation of the implementation of nursing interventions.

The review highlights the fact that to be able to say anything about the needs of nursing in the health field, we must evaluate how nursing functions and nurses act. When caring for the individual patient, qualitative methods are a natural choice for revealing the unique and specific qualities of the experiences of the individual nursing context.

CONFLICT OF INTEREST

All authors declare that there are no conflicts of interest with regard to this study.

AUTHOR CONTRIBUTIONS

KR was responsible for writing the manuscript. All authors contributed to the critical revision of the intellectual content, provided feedback on the draft manuscript and approved the final version. They all adhered to the criteria pertaining to roles and responsibilities in the research process recommended by the International Committee of Medical Journal Editors (ICMJE) ( http://www.icmje.org/recommendations ).

Overview of identified factors

Supporting information

Appendix I: Flow diagram

Appendix II: CASP checklist

ACKNOWLEDGEMENT

The authors would like to thank Monique Federsel for proofreading the English language and the specialized librarian at Stavanger University Hospital, Norway, for valuable help with the electronic search for articles.

Rørtveit K, Saetre Hansen B, Joa I, Lode K, Severinsson E. Qualitative evaluation in nursing interventions—A review of the literature . Nursing Open . 2020; 7 :1285–1298. 10.1002/nop2.519 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]

We acknowledge that the study was supported by grants from Stavanger University Hospital, Stavanger, Norway.

• Baron, A. M. , Ridgeway, J. L. , Stirn, S. L. , Morris, M. A. , Branda, M. E. , Inselman, J. W. , … Baker, C. A. (2018). Increasing the connectivity and autonomy of RNs with low‐risk obstetric patients . American Journal of Nursing , 118 ( 1 ), 48–55. [ PubMed ] [ Google Scholar ]
• Bolmsjo, I. , Edberg, A. K. , & Andersson, P. L. (2014). The use of drama to support reflection and understanding of the residents' situation in dementia care: A pilot study . International Journal of Older People Nursing , 9 ( 3 ), 183–191. 10.1111/j.1748-3743.2012.00333.x [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Campbell, N. C. , Murray, E. , Darbyshire, J. , Emery, J. , Farmer, A. , Griffiths, F. , … Kinmonth, A. L. (2007). Designing and evaluating complex interventions to improve health care . BMJ , 334 ( 7591 ), 455–459. [ PMC free article ] [ PubMed ] [ Google Scholar ]
• Critical Appraisal Skills Programme . (2019). CASP Qualitative checklist .Available at: https://caspuk.net/referencing/ . Accessed March 30,2019. [ Google Scholar ]
• Clignet, F. , van Meijel, B. , van Straten, A. , & Cuijpers, P. (2017). A qualitative evaluation of an inpatient nursing intervention for depressed elderly: The systematic activation method . Perspectives in Psychiatric Care , 53 ( 4 ), 280–288. 10.1111/ppc.12177 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Craig, P. , Dieppe, P. , Macintyre, S. , Michie, S. , Nazareth, I. , & Petticrew, M. (2008). Developing and evaluating complex interventions: The new Medical Research Council guidance . BMJ , 337 , a1655 10.1136/bmj.a1655 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Davisson, E. A. , & Swanson, E. A. (2018). Patient and nurse experiences in a rural chronic disease management program: A qualitative evaluation . Professional Case Management , 23 ( 1 ), 10–18. 10.1097/NCM.0000000000000244 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Dixon‐Woods, M. , Agarwal, S. , Jones, D. , Young, B. , & Sutton, A. (2005). Synthesising qualitative and quantitative evidence: A review of possible methods . Journal of Health Services Research & Policy , 10 ( 1 ), 45–53. 10.1177/135581960501000110 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Dixon‐Woods, M. , Cavers, D. , Agarwal, S. , Annandale, E. , Arthur, A. , Harvey, J. , … Sutton, A. J. (2006). Conducting a critical interpretive synthesis of the literature on access to healthcare by vulnerable groups . BMC Medical Research Methodology , 6 , 35 10.1186/1471-2288-6-35 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Furler, J. S. , Blackberry, I. D. , Walker, C. , Manski‐Nankervis, J.‐A. , Anderson, J. , O'Neal, D. , … Best, J. (2014). Stepping up: A nurse‐led model of care for insulin initiation for people with type 2 diabetes . Family Practice , 31 ( 3 ), 349–356. 10.1093/fampra/cmt085 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Graneheim, U. H. , Lindgren, B. M. , & Lundman, B. (2017). Methodological challenges in qualitative content analysis: A discussion paper . Nurse Education Today , 56 , 29–34. 10.1016/j.nedt.2017.06.002 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Graneheim, U. H. , & Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness . Nurse Education Today , 24 ( 2 ), 105–112. 10.1016/j.nedt.2003.10.001 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Graves, H. , Garrett, C. , Amiel, S. A. , Ismail, K. , & Winkley, K. (2016). Psychological skills training to support diabetes self‐management: Qualitative assessment of nurses' experiences . Primary Care Diabetes , 10 ( 5 ), 376–382. 10.1016/j.pcd.2016.03.001 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Hahne, P. , Lundstrom, S. , Levealahti, H. , Winnhed, J. , & Ohlen, J. (2017). Changes in professionals' beliefs following a palliative care implementation programme at a surgical department: A qualitative evaluation . BMC Palliative Care , 16 ( 1 ), 77 10.1186/s12904-017-0262-4 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Halcomb, E. J. , Furler, J. S. , Hermiz, O. S. , Blackberry, I. D. , Smith, J. P. , Richmond, R. L. , & Zwar, N. A. (2015). Process evaluation of a practice nurse‐led smoking cessation trial in Australian general practice: Views of general practitioners and practice nurses . Family Practice , 32 ( 4 ), 468–473. 10.1093/fampra/cmv041 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Hanifa, A. L. B. , Glaeemose, A. O. , & Laursen, B. S. (2018). Picking up the pieces: Qualitative evaluation of follow‐up consultations post intensive care admission . Intensive & Critical Care Nursing , 48 , 85–91. 10.1016/j.iccn.2018.06.004 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Hansen, B. S. , Rortveit, K. , Leiknes, I. , Morken, I. , Testad, I. , Joa, I. , & Severinsson, E. (2012). Patient experiences of uncertainty – A synthesis to guide nursing practice and research . Journal of Nursing Management , 20 ( 2 ), 266–277. 10.1111/j.1365-2834.2011.01369.x [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Helmle, K. E. , Edwards, A. L. , Kushniruk, A. W. , & Borycki, E. M. (2018). Qualitative evaluation of the barriers and facilitators influencing the use of an electronic basal bolus insulin therapy protocol to improve the care of adult inpatients with diabetes . Canadian Journal of Diabetes , 42 ( 5 ), 459–464.e1. 10.1016/j.jcjd.2017.10.059 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Hill, A. M. , Waldron, N. , Francis‐Coad, J. , Haines, T. , Etherton‐Beer, C. , Flicker, L. , … McPhail, S. M. (2016). ‘It promoted a positive culture around falls prevention’: Staff response to a patient education programme‐a qualitative evaluation . British Medical Journal Open , 6 ( 12 ), e013414 10.1136/bmjopen-2016-013414 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Iyer, N. S. , Koziel, J. R. , & Langhan, M. L. (2015). A qualitative evaluation of capnography use in paediatric sedation: Perceptions, practice and barriers . Journal of Clinical Nursing , 24 ( 15–16 ), 2231–2238. 10.1111/jocn.12848 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Kang, Y. , Moyle, W. , Cooke, M. , & O'Dwyer, S. (2017). Qualitative evaluation of a delirium prevention and management programme . Journal of Clinical Nursing , 26 ( 23–24 ), 4574–4582. 10.1111/jocn.13799 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Lewin, S. , Glenton, C. , Munthe‐Kaas, H. , Carlsen, B. , Colvin, C. J. , Gulmezoglu, M. , … Rashidian, A. (2015). Using qualitative evidence in decision making for health and social interventions: An approach to assess confidence in findings from qualitative evidence syntheses (GRADE‐CERQual) . PLoS Med , 12 ( 10 ), e1001895 10.1371/journal.pmed.1001895 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Luker, J. A. , Craig, L. E. , Bennett, L. , Ellery, F. , Langhorne, P. , Wu, O. , & Bernhardt, J. (2016). Implementing a complex rehabilitation intervention in a stroke trial: A qualitative process evaluation of AVERT . BMC Medical Research Methodology , 16 , 52 10.1186/s12874-016-0156-9 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• McDavid, J. C. , & Huse, I. (2006). Will evaluation prosper in the future? The Canadian Journal of Program Evaluation , 21 ( 3 ), 47. [ Google Scholar ]
• Michie, S. , & Abraham, C. (2004). Interventions to change health behaviours: Evidence‐based or evidence‐inspired? Psychology & Health , 19 ( 1 ), 29–49. 10.1080/0887044031000141199 [ CrossRef ] [ Google Scholar ]
• Michie, S. , Fixsen, D. , Grimshaw, J. M. , & Eccles, M. P. (2009). Specifying and reporting complex behaviour change interventions: The need for a scientific method . Implementation Science , 4 , 40 10.1186/1748-5908-4-40 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Moher, D. , Liberati, A. , Tetzlaff, J. , & Altman, D. G. (2009). Preferred reporting items for systematic reviews and meta‐analyses: The PRISMA statement . PLoS Med , 6 ( 7 ), e1000097. [ PMC free article ] [ PubMed ] [ Google Scholar ]
• Mohler, R. , Bartoszek, G. , Kopke, S. , & Meyer, G. (2012). Proposed criteria for reporting the development and evaluation of complex interventions in healthcare (CReDECI): Guideline development . International Journal of Nursing Studies , 49 ( 1 ), 40–46. 10.1016/j.ijnurstu.2011.08.003 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Morse, J. M. , Penrod, J. , & Hupcey, J. E. (2000). Qualitative outcome analysis: Evaluating nursing interventions for complex clinical phenomena . Journal of Nursing Scholarship , 32 ( 2 ), 125–130. 10.1111/j.1547-5069.2000.00125.x [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Qualitative Research & Evaluation Methods: Integrating Theory and Practice , 4th Edition ProtoView; Beaverton . 2 , 1 , Beaverton: Ringgold Inc. (Jan 5, 2015) [ Google Scholar ]
• PRISMA (2018). Preferred reporting items for systematic reviews and meta‐analyses . Transparent Reporting of Systematic Reviews and Meta‐Analyses. Available at: http://www.prisma‐statement.org/ . Accessed November 15, 2018. [ Google Scholar ]
• Sandelowski, M. (1996). Focus on qualitative methods: Using qualitative methods in intervention studies . Research in Nursing & Health , 19 ( 4 ), 359–364. 10.1002/(SICI)1098-240X(199608)19:4<359:AID-NUR9>3.0.CO;2-H [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Sandelowski, M. , & Barroso, J. (2007). Handbook for synthesizing qualitative research . New York, NY: Springer. [ Google Scholar ]
• Schumacher, K. L. , Koresawa, S. , West, C. , Dodd, M. , Paul, S. M. , Tripathy, D. , … Miaskowski, C. (2005). Qualitative research contribution to a randomized clinical trial . Research in Nursing & Health , 28 ( 3 ), 268–280. 10.1002/nur.20080 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Soderlund, M. , Cronqvist, A. , Norberg, A. , Ternestedt, B. M. , & Hansebo, G. (2016). Conversations between persons with dementia disease living in nursing homes and nurses – Qualitative evaluation of an intervention with the validation method . Scandinavian Journal of Caring Sciences , 30 ( 1 ), 37–47. 10.1111/scs.12219 [ PubMed ] [ CrossRef ] [ Google Scholar ]
• Stufflebeam & Shinkfield (2007). Evaluation theory, models and applications .San Fransisco CA: John Wiley & Sons Inc. [ Google Scholar ]
• van Manen, M. (2017). Phenomenology in its original sense . Qualitative Health Research , 27 ( 6 ), 810–825. 10.1177/1049732317699381 [ PubMed ] [ CrossRef ] [ Google Scholar ]

Sampling data and data collection in qualitative research

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Chrisman, J., & Jordan, R. (2014). Exploring Evidence-Based Practice. Nursing Made Incredibly Easy!, 12 (4), august, 8-12. Retrieved March 23, 2018, from https://www.nursingcenter.com/evidencebasedpracticenetwork/home/journalarticle.aspx?Article_ID=2492783.

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Falling and rising in the vortex of cancer: children’s adaptation with cancer: a qualitative study

• Fatemeh Sepahvand 1 ,
• Fatemeh Valizadeh 2 , 4 ,
• Kimia Karami 4 ,
• Babak Abdolkarimi 3 &
• Fatemeh Ghasemi 4  

BMC Psychology volume  12 , Article number:  221 ( 2024 ) Cite this article

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Cancer is a considerable health problem worldwide and the second leading cause of death in children. It has many physical, psychological, and social consequences for children and their families. The ability to adapt to cancer plays a vital role in the recovery and quality of life of affected children. This study aimed to explain the adaptation of children with cancer to their disease.

This qualitative study adopted the directed content analysis approach based on the Roy nursing model. The participants were nine children with cancer aged 6–18 years old, five family members, four nurses, one doctor, one teacher, and two charity association members, recruited by purposive sampling method. The information was collected via individual semi-structured interviews, a focus group discussion, and field notes. The data were analyzed simultaneously with data collection using the Elo and Kyngäs method. The study rigor was ensured based on the Guba and Lincoln criteria.

Of the four categories of physical challenges, fragile self-concept, the difficulty of role transition, and disruption of the path to independence, the theme of Falling and rising in the cancer vortex was abstracted.

Based on the Roy model, the children in the present study were at the compensatory level of adaptation. This research demonstrates that the adaptation of children being treated for cancer is fragile and not constant. With each hospitalization and exacerbation of the disease, they made efforts to adapt to their disease using regulatory and cognitive subsystems. Paying attention to different stimulants and the effects of support systems on physical challenges, fragile self-concept, difficult role transition, and disruption of the path to independence for each child, as well as providing individualized care for these children, can help their adaptation to and healthy transition from the vortex of cancer. The Roy adaptation model was helpful and efficient for elucidating the adaptation of children with cancer. Providing care for children by healthcare specialists, especially nurses, should be theory-based and individualized.

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Cancer is a major health problem and its increasing growth in recent decades, along with its negative impacts on physical, psychological, social, and economic aspects of human life, have greatly concerned experts [ 1 ]. Nowadays, with the development of medicine, cancer is gradually transforming from an acute and fatal disease into a chronic one in children and adolescents. Despite the increased survival rate, cancer causes life-threatening conditions [ 2 ]. Children and their families often report psychosocial stressors of cancer, such as loss of control over emotions, fear, distancing from the family, disrupted family practices, family conflicts, financial problems, and loss of social relationships with peers [ 3 ]. When a child is diagnosed with cancer, it can lead to psychological distress, including adaptation problems and its destructive consequences such as lack of adherence to health recommendations that is highly prevalent among the patients with chronic diseases [ 4 , 5 ]. Lack of treatment adherence can continually reduce the patients’ quality of life and may even endanger their life [ 6 ]. Therefore, checking and helping to manage adaptation in children with cancer is one of the important nursing measures.

Nursing theories and conceptual models regulate nurses’ activities and direct them in research, practice, education, and management [ 7 , 8 ]. The Roy adaptation model (2009) (Fig.  1 ) views individuals and groups as adaptive comprehensive systems that are continually in relationship and interaction with the environment and its stimulants [ 9 , 10 ]. Adaptive behaviors are positive responses to the focal, contextual, and residual stimulants [ 11 ]. Roy introduces two regulatory and cognitive subsystems to help the process of adaptation [ 12 ]. She has described three levels of adaptation: 1- integration level, which structures, performances, and processes are activated to meet one’s needs in life; 2- compensatory level, which the subsystems are activated to integrate the processes of one’s life; and 3- corrective level, which compensatory systems are inefficient and a negative response is formed [ 7 ]. The general goal of nursing is to focus on promoting individual or group health by increasing adaptation in four physiological, self-concept, role function, and interdependence modes [ 11 ]. Kohi et al. conducted a qualitative study to determine the concerns and needs related to cancer among young adults and children with cancer in Tanzania. They stated that more studies are required to understand and elucidate this group’s daily needs and concerns, especially in third world and low-income countries [ 13 ]. Children’s adaptation to cancer has so far been largely based on the experiences of survivors and parents. The adaptation of children with cancer during the treatment phase has been less studied based on their own experiences. Therefore, this study aimed to elucidate the adaptation of children with cancer based on the Roy adaptation model.

The Roy Adaptation Model (2009)

This was a qualitative study using directed content analysis. It was conducted in the pediatric oncology ward in Shahid Madani hospital, Khorramabad, Iran. Children with cancer in Iran are treated in 32 hospitals under the supervision of universities of medical sciences. Treatments such as surgery, chemotherapy, radiotherapy, hormone therapy, and transplantation are performed for cancer patients in big cities in Iran. Childhood cancer treatment costs are covered by special and incurable disease insurance and non-governmental organizations (NGOs) such as the Mahak charity. Mahak provides support, psychosocial and welfare services to cancer children and their families [ 14 , 15 ]. Shahid Madani Hospital has a children’s oncology ward. In this ward chemotherapy and medical treatments are done for children with cancer. Patients go to Tehran and big cities for other treatments such as surgery, radiotherapy, and…. In this hospital, Hamin charity affiliated to Mahak was established in 2015. Benevolent people and volunteers cooperate with this charity. Their purpose is to entertain and sometimes help with children’s educational issues, and to a limited extent financial aid to patients who are introduced to them by the head nurse or ward oncologist. Providing the services usually is limited to underprivileged ones and the lack of a formal system for notifying the patient and family has caused some families to be unaware of these services and bear the treatment costs themselves.

Participants

There were 22 participants, 15 females and 7 males, the main participants were nine children aged 6–18 with Acute lymphoblastic leukemia, Hodgkin’s lymphoma, or Osteosarcoma or etc.; however, based on the created concepts, other participants including five family members, four nurses, one oncologist, one teacher and two members of Hamin charity were also recruited later (appendix 1). Purposive sampling was performed from June 2019 to September 2020. Efforts were made to have maximum diversity in sampling in terms of sex, age, diagnosis, etc., so that the data would better represent the population. The sampling continued until the data reached saturation. The inclusion criteria for children were willingness to participate, have the age of 6–18 years old; 6 months have passed since their definitive diagnosis of cancer, lack of communication problems and no known history of psychological diseases. The exclusion criteria were the incidence of any events during the interview that would prevent the interview from moving on and unwillingness to continue participation.

Data collection

The main data collection method was in-depth, semi-structured interviews. A preliminary interview guide (Box 1 ) based on the four modes of the Roy adaptation model was used. During the interviews, based on the analysis, the questions were gradually added to this preliminary guide. The questions were posed to the participants in the form of reminding and recounting a memory. For children, the questions were made suitable to their developmental stage. The location and time of conducting the interviews were set with the participants and the interviews were audio-recorded with their permission. Moreover, notes were taken on the gestures, pauses, and other non-verbal communications of the participants. Each interview lasted for 30–45 min based on the participants’ cooperation. In addition, for brainstorming and further encouraging the children to talk, the focus group discussion with three children was also held but because of the COVID-19 pandemic, the focus group discussion was held online. When present in the field, the researcher recorded everything observed, heard, or experienced in relation to the research topic in the form of six field notes, which served as another means of data collection.

Data Analysis

The interviews and field notes were transcribed on paper verbatim as soon as possible, then typed in Microsoft Word software and then entered into MaxQDA software version 2010. The data were analyzed simultaneously with data collection using the Elo and Kyngäs method. According to Elo and Kyngäs, content analysis comprises three main phase: preparation, organization, and reporting [ 16 , 17 ]. In total, 1010 codes were obtained upon data analysis. Upon continuous comparison and placement of similar codes in a previously prepared matrix based on the Roy model, four themes of physical challenges, fragile self-concept, difficulty of role transition, and disruption of the path to independence were determined (Table  1 ).

The Guba and Lincoln trustworthiness criteria, credibility, dependability, confirmability, and transferability were used to ensure the rigor of the study [ 18 ]. To enhance the credibility of the findings, prolonged engagement with the participants and member checks (the findings of the study were seen by three participants for confirmation and they stated that they were accurate in their perception and transfer of experiences) were used. The dependability of the data was confirmed by transcribing the interviews as soon as possible, seeking peers’ opinions, and reviewing the entire data. To guarantee confirmability, a voice recorder was used to record all the interviews. In addition to the comments and participation of the research team, the comments of two external appraisers were used. In all the stages of the study, parts of the codes, subcategories, and categories were given to them, and they were requested to examine the process. Then, their comments for confirmation or modification were applied. To guarantee data transferability, sampling was performed with maximum diversity.

Experiences of children with cancer in terms of adaptation were described as falling and rising in the vortex of cancer. Based on this concept, children are constantly trying to adapt to their disease based on their disease recovery/exacerbation status and support systems.

Physical challenges

The physical challenges experienced by these children included disruption in breathing pattern, disruption in nutritional pattern, disruption in activity and rest pattern, collapse of the protective system, unpleasant accompaniment of pain, and agitated nerves. The mother of a participant mentioned: “Every time his disease relapses, he breathes with difficulty and must receive oxygen all the time.” (Participant 4).

The field note about disruption in nutritional pattern: “The child felt nauseated and loudly gagged several times.” The mother stated: “She hasn’t even had water and her stomach is completely empty.” (Field note 3).

A 17-year-old adolescent said: “I experience weakness and malaise because of the medication. I feel dizzy”. (Participant 2)

A doctor said: “They experience hair loss due to the side-effects of the medications. Their skin is dried or discolored on the face, eyebrows, and eyelids. White lines may appear on the nails.” (Participant 20).

A 13-year-old boy said: “I was in a lot of pain. I could not sleep at night because of it. I had to take a bath and pour warm water on it to relieve pain. My mom kept massaging my feet, but the pain wouldn’t go away.” (Participant 21).

Fragile self-concept

Based on the findings, extensive and debilitating cancer can lead to a “distorted body image” in the physical self and a “fragile personal self” in the personal self-component. “Feeling of ugliness following hair loss” and “efforts to regain fitness” were the major concepts of distorted body image.

A 10-year-old boy said, “I’m not happy about my hair loss; I feel embarrassed. I have become ugly. I was very pretty when I had hair.” (Participant 7).

The aunt of a patient mentioned: “He is really sad because he has been obese due to the medications. He hardly do exercise to lose weight with the help of his father.” (Participant 12).

“Apprehension”, “emotional behaviors”, “fragile spirituality”, “threatened future”, and “efforts for positive thinking” lead to an “unstable personal self” in children with cancer.

“Apprehension” was abstracted from “rumination of hospitalization” and “distress and torment of diagnostic-therapeutic methods”. The thought or experience of painful diagnostic and therapeutic methods made these children feel distressed and tormented constantly. A 13-year-old girl stated, “I couldn’t sleep until 5 in the morning last night because I knew I’d be hospitalized the next day. I kept thinking how many venous catheters they’d be placing.” (Participant 22).

These children demonstrated “emotional behaviors” such as “crying”, “agitation”, “impatience”, “discomfort”, and “grumpiness”. A 17-year-old boy stated, “I’ve become angry, stubborn, and cross. I do not want to use my disease as an excuse. However, it’s something others have to accept. Anyone who sits on these beds will start nagging and being stubborn.” (Participant 3).

The patients and their families took refuge in religious and cultural beliefs to control and manage the stress caused by cancer. These children and their families believe in invoking God and saints for recovery. Thus, when their patients are not recovered and the treatment is prolonged, they start complaining to God and the saints. One of the participants said: “I used to tell God, ‘Cure all the patients who are at the hospital. Then cure me too. Don’t let me suffer too much. Sometimes, I complained to Him about being ill.” (Participant 22).

Upon experiencing “lost health and beauty”, “endangered academic-occupational future”, “disrupted life routine”, and “endangered life expectancy” as well as with the prolongation of the treatment process and lack of recovery, some children lost their hope and spirits, and became depressed over time. A nurse declared the following about a 17-year-old boy: “His mother says he has thought about suicide several times.” (Participant 18).

Some children believed that maintaining their spirits affected their recovery. One of the participants said: “When this happened to me, I decided to make myself happy, instead of being sad. I keep telling myself it’s like a cold and I’ll be fine one day. I imagine the future when I’m fine.” (Participant 21).

Difficulty of role transition

A child’s primary role in the family is that of a child and a student, and playing these roles is difficult under the effect of cancer. However, in most cases, children tried to demonstrate “responsibility despite cancer” by “adjusting responsibility at home” and “continuing education despite difficulties”. A mother mentioned: “During treatment, she kept cleaning her room; even when she was in a poor physical condition.” (Participant 22).

A 16-year-old girl stated: “At the beginning of the disease, I asked my doctor, ‘What will happen to my studies?’ He replied, ‘A teacher will attend the ward.’ When we went back home, we hired a tutor, also my elder sister and brothers helped me. I went to school only for the exams.” (Participant 1).

Loss of income (secondary role): Some adolescents used to work and earn money for themselves and their families, and the disease led to the loss of their jobs and income. A 17-year-old boy stated, “I used to be a street vendor, but, physically, I can’t do it anymore.” (Participant 5).

Trying to tolerate cancer (tertiary role) expresses the participants’ experiences in making efforts to accept the patient role. Primary categories were: “in search of diagnosis”, “cancer bottlenecks”, “treatment adherence”, and “reduction the social activities”. Many children and families ignored the primary physical symptoms and turned to “self-treatment”; this led to a “delayed visit to the doctor”. A participant mentioned: “My foot hurt so much. I took a pack of Ibuprofen a week, with no effect. Then, I told my dad, ‘Let’s go to a doctor or hospital and see what it is.’ (Participant 21).

The participants declared that, after the diagnosis of cancer, they faced “cancer bottlenecks” including efforts to understand cancer, hiding the disease from others, not accepting the limitations, and the need for the passage of time. These children were making “efforts to understand cancer” by understanding it through experience, asking others, searching the Internet, and reading books. A 17-year-old boy said, “No one has told me its cancer. I searched the Internet and found what it was. When I ask my mother, she says it’s not cancer.” (Participant 5).

Many children did not wish for others to know their diagnosis and the reason was the fear of being abandoned by them. This is why they did not wear a hat or mask because it would attract attention, and it would bother them if their family would tell others about their disease. A 13-year-old boy said, “People kept asking me why my hair was falling. I was fed up with all these questions. I was afraid they’d leave me if they’d know what my disease was.” (Participant 21).

“Lack of adherence to doctors’ orders”, “lack of adherence to isolation and “lack of adherence to dietary restrictions” were evidence for “not accepting the limitations”. A mother said, “The doctor wouldn’t allow me to send him to school, but I do because he really likes to go.” (Participant 4).

The adaptive behaviors experienced by these children included “adherence to doctors’ orders”, “performing diagnostic and therapeutic tests”, “adherence to isolation”, and “searching for a healthy lifestyle”. When the researcher was present in the field and during patient visits, a 17-year-old patient posed the following questions to his doctor: “What can I eat? Would take-out be harmful? Can I go to my friend’s birthday party? Would riding a motorbike hurt me? Can I go to the gym?” (Field note 3).

Due to the nature of the disease or the medication side effects, these children experienced a “reduction in social activities”. A participant mentioned: “Before this disease, I had a black belt in Karate. But after the disease, I had to quit it.” (Participant 5).

Disruption of the path to independence

In this study, significant others included the family, friends, relatives, teachers, ward psychologists, nurses, and doctors.

“Others’ educational role”, “others’ dutifulness”, “boosting morale”, “normalization”, and “continuing relationships with others” were among the children’s empowering behaviors by significant others, while “a sense of debt to the family” and “entertaining oneself alone” were the children adaptive behaviors.

Children felt a debt to the family because the family took the trouble of maintaining hygiene, took care of them, felt sad because of their illness, and had financial problems because of the disease. Some children made “efforts to compensate for the family’s troubles” by thanking their mothers for always accompanying them in the hospital, improving their relationship with the family because of their support, and studying during treatment. The aunt of a participant said: “My niece used to say, ‘I should compensate for this disease and the trouble it has caused for my family by studying and education’” (Participant 12).

“Social isolation” and “emotional conflict with others” were the significant others’ limiting behaviors towards the children, whereas “envying others’ health” and “having expectations of others” were among the children’s maladaptive behaviors. A 10-year-old girl noted, “My friends laugh at me; they call me bald. I don’t like to be called bald. It offends me. I don’t play with them anymore.” (Participant 6).

A 10-year-old boy declared: “When I watch healthy children playing from the window, I feel sad because I can’t play like them” (Participant 23).

In the focus group discussion, one of the participants mentioned the following about the nurse’s crying during cannulation: “Ms.…[the nurse] has cannulated half my veins; she cried when she saw my state.” (Participant 23).

According to the participants, support systems included the family, the healthcare system, the educational system, the members of charity associations, and insurance companies. Almost all the significant others for the children were part of their support system as well. The preliminary categories of this subcategory were “the financial problems of the family”, “a lack of an integrated and purposive healthcare system”, “lack of specialized insurance”, “sufficiency of the educational system”, and “benefits of the charity associations”.

A nurse said: “We had a patient, the family of whom did not have a good economic status; he was really sad and had not coped with his disease. He was hurt more because there was also a financial burden to bear. There was once a boy, almost the same age as him, with the same disease, but better economic status. Our other patient had coped with his disease better because of the better economic status of his family” (Participant 17).

The “lack of an integrated and purposive treatment system” included a delay in providing services to patients, inappropriate time of some nursing and therapeutic care, and lack of facilities in the ward and medication challenges. The most important concerns of the children admitted to the ward were “inappropriate time of some therapeutic and diagnostic measures or nursing cares”. A participant mentioned: “They used to wake me up at 3 in the morning for cannulation” (Participant 23).

Uninsured families or those with low-coverage insurance were in trouble paying for the treatments. A mother said, “His treatment is too expensive and there’s no one to support us. We visited State Welfare Organization and The Mahak Foundation; they said, ‘It’s a difficult-to-treat disease and not covered.’…. only pays a part of the costs of medications. We pay for the rest of the treatment costs, even though my husband is a worker” (Participant 9).

The stimulants belonging to each mode are presented in Table  2 .

Based on this study, children with cancer adapting to their disease did not have a steady and continuous condition, rather they had ups and downs in this area with every hospitalization or based on their disease recovery/exacerbation status and how much their social network was supportive. Based on Roy’s adaptation model, children with cancer experience numerous physical challenges in the physiological mode, especially in terms of activity, sleep and rest, nutrition, senses (pain), protection system, etc. Sibulwa et al. also declared that children with cancer experience physical challenges [ 2 ]. In the study by Kohi et al., one of the needs identified for children with cancer was a concern for physical problems [ 13 ]. These experiences impact all aspects of cancer patients’ life such as daily activities, level of independence, cognitive and physical activities, work, intimate relationships [ 5 ], quality of life, and emotional status. The ability to perform routine and daily activities is a determinant of cancer patients’ quality of life [ 2 ]. Thus, healthcare specialists should develop care measures and support strategies that assist patients’ health and functioning in daily life, both during and after the course of treatment.

The participants had a “fragile self-concept” because children’s image of their bodies was distorted. The effects of hair loss [ 19 ] and a change in children with cancer’s body image [ 20 ] lead to psychological challenges and severe alterations in self-concept [ 2 , 21 ]. In the study of Negussie et al the prevalence of psychological distress among patients with cancer was high [ 22 ]. Based on the participants’ experiences, the negative impact of the loss of beauty increased as they approached puberty. Still, the consequences of hair loss were fewer for girls because they wore scarves, wigs, and headbands, and used makeup such as kohl and eyebrow pencils. Thus, it is recommended that the proper use of these covers be trained for children with hair loss, especially when they are in public.

Personal self of the participants was “Unstable”. The stress of hospitalization and diagnostic-therapeutic measures persisted like a mental obsession even when they were at home. It is known that diagnostic and therapeutic measures such as lumbar puncture and intrathecal create high levels of pain, fear, anxiety, and emotional distress in children [ 23 ]. In the present study, some children demonstrated adaptive behavior of “efforts for positive thinking”. Therefore, in addition to drug measures, nurses should extensively use storytelling, playing, jokes, and other non-drug strategies for pain management and coping with children’s emotional distress in these cases. They should also teach children relaxation methods and positive thinking to control their negative thoughts. Moreover, they should respect the patients’ religious and cultural beliefs, and seek the help of religious missionaries in the ward near the children and their families for offering spiritual support.

“Difficulty of role transition” shows the children’s efforts to adjust themselves to problems of changing roles from being a student and an offspring to a person with those roles despite cancer. They tried to adapt their responsibilities based on their physical condition, and the support of family, hospital, and school while adhering to the principles of infection control in the right condition. Continuing education was important for the children due to the public attitude and the sense of value attached to it. Chao, Chen, et al. stated that, in the Taiwanese culture, academic performance is the most important criterion for evaluating children and adolescents [ 24 ]. Thus, healthcare specialists should actively support the child’s education during treatment.

As for secondary roles, some boys aged 15–17 years old played the role of the “source of income for themselves, and the family” by working before the disease and “quitting their job after the disease” had led to the “loss of income”. Knox et al. also noted that the experience of advanced cancer disrupted developmental responsibilities [ 25 ]. Thus, it is suggested that support systems financially support these children and their families, so that financial problems would not make them delay or quit treatment.

The most important tertiary role for children was being a patient. Participants either ignored the initial symptoms of the disease themselves or spent a lot of time to confirm the diagnosis. According to Kohi et al., one of the greatest challenges identified in relation to cancer had to do with inaccurate diagnosis or treatments during the patients’ first visits, which delayed the diagnosis and onset of treatment [ 13 ]. Therefore, it is recommended that the general and specialized education for the healthcare team focus on taking the initial symptoms of pediatric cancer seriously.

Children tried to understand cancer by asking others about its nature, searching the media and the Internet, and reading books; sometimes, only the experience of living with cancer formed their understanding. Some parents tried to hide the diagnosis of cancer from their children; therefore, some participants had a vague understanding of their disease. The children themselves sometimes hid their disease to prevent pity, curiosity, and abandonment by others. After understanding the disease and a change in their body image, the children tried to hide the disease to maintain a sense of integrity and reduce harm from others. Children with cancer hope that they can be viewed as normal people and refuse to be labeled as patients [ 19 ]. Over time, they gradually get used to the diagnosis and painful and invasive treatments. Then, they talk to others about the disease or the difficult treatment becomes tolerable for them. To them, immediate hospitalization with no prior preparation and starting with painful tests on their first visit to the hospital were very unpleasant; they suggested that the child be prepared to some extent before the first hospitalization and onset of treatment. Sometimes they did not accept the limitations of the disease and showed the maladaptive behaviors in the role of the patient. Lack of adherence to treatment is a major concern in oncology because it can expose the patient to a greater risk of relapse, side effects, and poorer treatment outcomes. Adherence to treatment can affect survival, especially in types of cancer, for which chemotherapy plays a key role [ 26 ]. Results of the study by Naghavi et al. revealed that information about the nature of the disease, the side-effects of the disease, treatments, prevention of disease exacerbation, and awareness of the outcomes of lack of adherence to therapeutic recommendations, promote adherence to treatment and optimal treatment outcomes [ 27 ]. As a result, the healthcare team should prioritize measures to promote adherence to treatment. It is therefore, suggested that booklets explaining these points be developed and provided to children. Moreover, to boost the children’s spirits and, thus, promote their adherence to treatment, movies about children surviving cancer, new scientific achievements to enhance cancer treatment, and the effect of hope on recovery should be prepared and shown to the children.

Children’s social activities and interactions in exercise and religious groups were limited due to fatigue and immobility of cancer. The majority of adolescents in the study by Sibulwa et al. declared that cancer treatment and surgery negatively influence their daily activities and social interactions [ 2 ]. Thus, it seems these children should be guided about continuing their social activities without exertion while adhering to the principles of infection control.

The participants’ experiences showed a disruption of independence. Yi et al. noted that children with cancer cling to their parents because of the anxiety they experience [ 28 ]. Decker et al. also mentioned that it is essential to pay attention to the threatened independence of adolescents with cancer [ 29 ]. In today’s societies, social support is regarded as the most important facilitator of health-related behaviors; it is the most powerful method for successfully coping with stressful situations and makes it easier for people to bear difficulties [ 30 ]. Woodgate et al. stated that the need for further acceptance, attention, and care by family and friends at the time of illness are among the children’s fundamental needs after facing the disease [ 31 ]. It is, therefore, suggested that healthcare specialists prepare programs for continuing the children’s relationship with their peers and social support network virtually and in person, whether at the hospital or at home, and prepare children for continuing social interactions after discharge.

Financial support systems were insufficient. According to Kohi et al., cancer imposes an additional financial burden on the family and this concerns the child, leading to maladaptive behaviors such as quitting treatment [ 13 ]. Before assuming the role of caregiver for a child with cancer, family caregivers need to be educated and sensitized about the potential pressures they may face. Also, the formal participation of non-governmental organizations and religious institutions also ensures that family caregivers benefit from adequate community support to cope with the pressures of caregiving [ 32 ]. Thus, it is suggested that authorities and charity associations pay more attention to resolving these families’ financial problems. Support networks can positively affect the quality of life of these children and their families through financial aids and further ensuring their economic-social security. Support systems should also support children and their families in different modes.

Stimulants on each child differed from another child. Evidently, children of different age groups reacted to these stimulants differently based on their developmental age and the accessibility of regulatory and cognitive subsystems. Based on the findings, the children in the present study were at the compensatory level of adaptation; with each hospitalization and exacerbation of the disease, they made efforts to adapt to their disease by using regulatory and cognitive subsystems. Due to the difference in stimulants on each child, the existence of different subsystems, and their different support levels, these children should receive individualized care. The results of this research can be used in future studies to design intervention studies to improve the adaptation of children with cancer.

Roy’s adaptation model was efficient in elucidating the experiences of children with cancer in adaptation to their disease. Children with cancer experienced almost the same physical challenges, but their experiences in the other three modes of adaptation differed depending on the stimulants as well as access to and use of subsystems. Children with influential others who reinforced their empowering behaviors and with better and more support resources were more positive and showed more adherence to treatment in adapting to their disease. On the other hand, children who were influenced by the limiting behaviors of their influential others and insufficiency of support systems considered their future as threatened. Maladaptive behaviors such as suicidal thoughts were also observed in some children. These children did not accept their role as a patient and had lower adherence to treatment. Due to the difference in stimulants on each child, the healthcare specialists, and especially nurses, should develop and implement their care and support measures in proportion to each child’s conditions to help the child adapt and safely pass the vortex of cancer.

Data availability

If someone wants to request, the data from this study should contact Dr. Fatemeh Valizadeh and Miss Fatemeh Sepahvand, who the data set used during the study is kept by them.

Bray F, Ferlay J, Soerjomataram I, Siegel RL, Torre LA, Jemal A. Global cancer statistics 2018: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. Cancer J Clin. 2018;68(6):394–424. https://doi.org/10.3322/caac.21492 .

Article   Google Scholar  

Sibulwa S, Chansa-Kabali T, Hapunda G. Every part of me has changed: hared lived experiences of adolescents living with cancer in Zambia. Health Psychol Open. 2019;6(1):1–13. https://doi.org/10.1177/2055102919833537 .

Nóia TD, Sant’Ana RS, Santos AD, Oliveira SD, Veras B, Cardoso SM, et al. Coping with the diagnosis and hospitalization of a child with childhood cancer. Investigations Educ Enfermeria. 2015;33(3):465–72. https://doi.org/10.17533/udea.iee.v33n3a10 .

Bollinger J, Jaeger M, Hoff P, Theodoridou A. Challenges and opportunities in building and maintaining a good therapeutic relationship in acute psychiatric settings: a narrative review. Front Psychiatry. 2020;10:965. https://doi.org/10.3389/fpsyt.2019.00965 .

White K, Issac MS, Kamoun C, Leygues J, Cohn S. The THRIVE model: a framework and review of internal and external predictors of coping with chronic illness. Health Psychol Open. 2018;5(2):20–32. https://doi.org/10.1177/2055102918793552 .

Jacob L, Breuer J, Kostev K. Prevalence of chronic diseases among older patients in German general practices. GMS German Med Sci. 2016;14. https://doi.org/10.3205/000230 .

I·sbir GG, Mete S. Nursing care of nausea and vomiting in pregnancy. Roy Adaptation Model. 2010;23(2):148–55. https://doi.org/10.1177/0894318410362489 .

Wang X, Zhang Q, Shao J, Ye Z. Conceptualization and measurement of adaptation within the Roy adaptation model in chronic care: a scoping review protocol. BMJ open. 2020;10(6):e036546. https://doi.org/10.1136/bmjopen-2019-036546 .

Article   PubMed   PubMed Central   Google Scholar  

Callis AM. Application of the Roy Adaptation Theory to a care program for nurses. Appl Nurs Res. 2020;56:151340. https://doi.org/10.1016/j.apnr.2020.151340 .

Roy C. The Roy adaptation model 2009.3rd ed. Upper Saddle River, NJ: Pearson Prentice Hall Health. https://www.pearson.com/en-us/subject-catalog/p/roy-adaptation-model-the/P200000001763/9780130384973 .

Yeh C-H. Adaptation in children with cancer: research with Roy’s model. Nurs Sci Q. 2001;14(2):141–8. https://doi.org/10.1177/089431840101400209 .

Article   PubMed   Google Scholar  

Alkrisat M, Dee V. The validation of the coping and adaptation processing scale based on the Roy Adaptation Model. J Nurs Meas. 2014;22(3):368–80. https://doi.org/10.1891/1061-3749.22.3.368 .

Kohi T, von Essen L, Masika G, Gottvall M, Dol J. Cancer-related concerns and needs among young adults and children on cancer treatment in Tanzania: a qualitative study. BMC Cancer. 2019;19(1):1–9. https://doi.org/10.1186/s12885-019-5279-z .

Sajadi HS, Ehsani-Chimeh E, Majdzadeh R. Universal health coverage in Iran: where we stand and how we can move forward. Med J Islam Repub Iran. 2019;33:9. https://doi.org/10.34171/mjiri.33.9 .

Alebouyeh M. Current status of Pediatric Oncology in Iran. Asian Pac J Cancer Care. 2017;2(4):71. https://doi.org/10.31557/APJCC.2017.2.4.71 .

Elo S, Kyngäs H. The qualitative content analysis process. J Adv Nurs. 2008;62(1):107–15. https://doi.org/10.1111/j.1365-2648.2007.04569.x .

Hsieh F, Shannon S. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277–88. https://doi.org/10.1177/1049732305276687 .

Guba EG, Lincoln YS. Fourth generation evaluation. India: SAGE; 1989.

Google Scholar  

Lee M, Mu P, Tsay SF, Chou SS, Chen YC, Wong TT. Body image of children and adolescents with cancer: a metasynthesis on qualitative research findings. Nurs Health Sci. 2012;14(3):381–90. https://doi.org/10.1111/j.1442-2018.2012.00695.x .

Brouwer C, Gietema J, Kamps W, De Vries E, Postma A. Changes in body composition after childhood cancer treatment: impact on future health status—A review. Crit Rev Oncol/Hematol. 2007;63(1):32–46. https://doi.org/10.1016/j.critrevonc.2007.01.007 .

Cousino K, Hazen R, Josie L, Laschinger K, de Blank P, Taylor G. Childhood cancer and brain tumor late effects: relationships with family burden and survivor psychological outcomes. J Clin Psychol Med Settings. 2017;24(3–4):279–88. https://doi.org/10.1007/s10880-017-9519-6 .

Negussie F, Giru BW, Yusuf NT, Gela D. Psychological distress and associated factors among cancer patients in public hospitals, Addis Ababa, Ethiopia: a cross-sectional study. BMC Psychol. 2023;11(1):1–9. https://doi.org/10.1186/s40359-023-01079-5 .

Jay S, Elliott CH, Fitzgibbons I, Woody P, Siegel S. A comparative study of cognitive behavior therapy versus general anesthesia for painful medical procedures in children. Pain. 1995;62(1):3–9. https://doi.org/10.1016/0304-3959(94)00216-2 .

Chao CC, Chen SH, Wang CY, Wu YC, Yeh CH. Psychosocial adjustment among pediatric cancer patients and their parents. J Neuropsychiatry Clin Neurosci. 2003;57(1):75–81. https://doi.org/10.1093/jpepsy/16.4.463 .

Knox MK, Hales S, Nissim R, Jung J, Lo C, Zimmermann C, et al. Lost and stranded: the experience of younger adults with advanced cancer. Support Care Cancer. 2017;25(2):399–407. https://doi.org/10.1007/s00520-016-3415-8 .

Butow P, Palmer S, Pai A, Goodenough B, Luckett T, King M. Review of adherence-related issues in adolescents and young adults with cancer. J Clin Oncol. 2010;28(32):4800–9. https://doi.org/10.1200/JCO.2009.22.2802 .

Naghavi S, Mehrolhassani MH, Nakhaee N, Yazdi-Feyzabadi V. Effective factors in non-compliance with therapeutic orders of specialists in outpatient clinics in Iran: A qualitative study. BMC Health Serv Res. 2019;19(1):1–16. https://doi.org/10.1186/s12913-019-4229-4 .

Yi J, Zebrack B, Kim M, Cousino M. Posttraumatic growth outcomes and their correlates among young adult survivors of childhood cancer. J Pediatr Psychol 2015;40(9):981–91. https://doi.org/10.1093/jpepsy/jsv075 .

Decker CL. Social support and adolescent cancer survivors: a review of the literature. Psycho-Oncology: J Psychol Social Behav Dimensions Cancer. 2007;16(1):1–11. https://doi.org/10.1002/pon.1073 .

Darcy L, Enskär K, Björk M. Young children’s experiences of living an everyday life with cancer: a three year interview study. Eur J Oncol Nurs. 2019;39(2):1–9. https://doi.org/10.1016/j.ejon.2018.12.007 .

Woodgate RL. A different way of being: adolescents’ experiences with cancer. Cancer Nurs. 2005;28(1):8–15. https://doi.org/10.1097/00002820-200501000-00002 .

Mensah AB, Nunoo H, Mensah KB, Okyere J, Dzomeku VM, Apiribu F, Asoogo C, Clegg-Lamptey JN. Impact of childhood and adolescence cancer on family caregivers: a qualitative analysis of strains, resources and coping behaviours. BMC Psychol. 2023;11(1):361. https://doi.org/10.1186/s40359-023-01406-w .

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Acknowledgements

This article is the result of a master’s degree thesis in the field of pediatric nursing approved by the Vice Chancellor for Research and Technology of Lorestan University of Medical Sciences with the code of ethics: (IR.LUMS.REC.1398.071). We would like to thank all the participants and the staff of the Pediatric oncology ward in Shahid Madani hospital, for their cooperation to perform the interviews in a suitable environment.

This research was funded by Lorestan University of Medical Sciences.

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Fatemeh Sepahvand

Social Determinants of Health Research Center, Lorestan University of Medical Sciences, Khorramabad, Iran

Fatemeh Valizadeh

Pediatrics Oncologist-Hematologist, Lorestan University of Medical Sciences, Khorramabad, Iran

Babak Abdolkarimi

Department of Pediatrics Nursing, School of Nursing and Midwifery, Lorestan University of Medical Sciences, Khorramabad, Iran

Fatemeh Valizadeh, Kimia Karami & Fatemeh Ghasemi

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Miss Fatemeh Sepahvand conducted the research and interviews and write the manuscript. Dr. Fatemeh Valizadeh led the design and supervised the conduct of the research, performed data analysis and interpretation, and write and revise the manuscript. Dr. Fatemeh Ghasemi helped with data analysis and interpretation. Dr. Kimia Karami helped with data analysis and interpretation. Dr Babak Abolkarimi consulted us on the project. All of the authors read and approved the study and the manuscript.

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Correspondence to Fatemeh Valizadeh .

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All methods were carried out in accordance with the Helsinki Declaration. The study received ethics approval (IR.LUMS.REC.1398.071) from Ethics Committee of Lorestan University of Medical Sciences. After explaining the objective of the study, the researchers obtained father’s or mother’s informed consent to participation of his/her child in research, children’s verbal assent and the written informed consent of the other participants and getting permission to record the interview. The information letter stated that participation was confidential and voluntary and that the choice to participate or not, would not influence the forthcoming care at the ward. All methods were performed in accordance with the relevant guidelines and regulations.

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Sepahvand, F., Valizadeh, F., Karami, K. et al. Falling and rising in the vortex of cancer: children’s adaptation with cancer: a qualitative study. BMC Psychol 12 , 221 (2024). https://doi.org/10.1186/s40359-024-01722-9

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Received : 28 July 2023

Accepted : 08 April 2024

Published : 22 April 2024

DOI : https://doi.org/10.1186/s40359-024-01722-9

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