qualitative research related studies

• Open access
• 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

739k Accesses

306 Citations

84 Altmetric

Metrics details

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.

Download references

Acknowledgements

no external funding.

Author information

Authors and affiliations.

Department of Neurology, Heidelberg University Hospital, Im Neuenheimer Feld 400, 69120, Heidelberg, Germany

Loraine Busetto, Wolfgang Wick & Christoph Gumbinger

Clinical Cooperation Unit Neuro-Oncology, German Cancer Research Center, Heidelberg, Germany

Wolfgang Wick

You can also search for this author in PubMed   Google Scholar

Contributions

LB drafted the manuscript; WW and CG revised the manuscript; all authors approved the final versions.

Corresponding author

Correspondence to Loraine Busetto .

Ethics declarations

Ethics approval and consent to participate, consent for publication, competing interests.

The authors declare no competing interests.

Additional information

Publisher’s note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ .

Reprints and permissions

About this article

Cite this article.

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

Download citation

Received : 30 January 2020

Accepted : 22 April 2020

Published : 27 May 2020

DOI : https://doi.org/10.1186/s42466-020-00059-z

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

• Qualitative research
• Mixed methods
• Quality assessment

Neurological Research and Practice

ISSN: 2524-3489

• Submission enquiries: Access here and click Contact Us
• General enquiries: [email protected]

Chapter 1. Introduction

“Science is in danger, and for that reason it is becoming dangerous” -Pierre Bourdieu, Science of Science and Reflexivity

Why an Open Access Textbook on Qualitative Research Methods?

I have been teaching qualitative research methods to both undergraduates and graduate students for many years.  Although there are some excellent textbooks out there, they are often costly, and none of them, to my mind, properly introduces qualitative research methods to the beginning student (whether undergraduate or graduate student).  In contrast, this open-access textbook is designed as a (free) true introduction to the subject, with helpful, practical pointers on how to conduct research and how to access more advanced instruction.  

Textbooks are typically arranged in one of two ways: (1) by technique (each chapter covers one method used in qualitative research); or (2) by process (chapters advance from research design through publication).  But both of these approaches are necessary for the beginner student.  This textbook will have sections dedicated to the process as well as the techniques of qualitative research.  This is a true “comprehensive” book for the beginning student.  In addition to covering techniques of data collection and data analysis, it provides a road map of how to get started and how to keep going and where to go for advanced instruction.  It covers aspects of research design and research communication as well as methods employed.  Along the way, it includes examples from many different disciplines in the social sciences.

The primary goal has been to create a useful, accessible, engaging textbook for use across many disciplines.  And, let’s face it.  Textbooks can be boring.  I hope readers find this to be a little different.  I have tried to write in a practical and forthright manner, with many lively examples and references to good and intellectually creative qualitative research.  Woven throughout the text are short textual asides (in colored textboxes) by professional (academic) qualitative researchers in various disciplines.  These short accounts by practitioners should help inspire students.  So, let’s begin!

What is Research?

When we use the word research , what exactly do we mean by that?  This is one of those words that everyone thinks they understand, but it is worth beginning this textbook with a short explanation.  We use the term to refer to “empirical research,” which is actually a historically specific approach to understanding the world around us.  Think about how you know things about the world. [1] You might know your mother loves you because she’s told you she does.  Or because that is what “mothers” do by tradition.  Or you might know because you’ve looked for evidence that she does, like taking care of you when you are sick or reading to you in bed or working two jobs so you can have the things you need to do OK in life.  Maybe it seems churlish to look for evidence; you just take it “on faith” that you are loved.

Only one of the above comes close to what we mean by research.  Empirical research is research (investigation) based on evidence.  Conclusions can then be drawn from observable data.  This observable data can also be “tested” or checked.  If the data cannot be tested, that is a good indication that we are not doing research.  Note that we can never “prove” conclusively, through observable data, that our mothers love us.  We might have some “disconfirming evidence” (that time she didn’t show up to your graduation, for example) that could push you to question an original hypothesis , but no amount of “confirming evidence” will ever allow us to say with 100% certainty, “my mother loves me.”  Faith and tradition and authority work differently.  Our knowledge can be 100% certain using each of those alternative methods of knowledge, but our certainty in those cases will not be based on facts or evidence.

For many periods of history, those in power have been nervous about “science” because it uses evidence and facts as the primary source of understanding the world, and facts can be at odds with what power or authority or tradition want you to believe.  That is why I say that scientific empirical research is a historically specific approach to understand the world.  You are in college or university now partly to learn how to engage in this historically specific approach.

In the sixteenth and seventeenth centuries in Europe, there was a newfound respect for empirical research, some of which was seriously challenging to the established church.  Using observations and testing them, scientists found that the earth was not at the center of the universe, for example, but rather that it was but one planet of many which circled the sun. [2]   For the next two centuries, the science of astronomy, physics, biology, and chemistry emerged and became disciplines taught in universities.  All used the scientific method of observation and testing to advance knowledge.  Knowledge about people , however, and social institutions, however, was still left to faith, tradition, and authority.  Historians and philosophers and poets wrote about the human condition, but none of them used research to do so. [3]

It was not until the nineteenth century that “social science” really emerged, using the scientific method (empirical observation) to understand people and social institutions.  New fields of sociology, economics, political science, and anthropology emerged.  The first sociologists, people like Auguste Comte and Karl Marx, sought specifically to apply the scientific method of research to understand society, Engels famously claiming that Marx had done for the social world what Darwin did for the natural world, tracings its laws of development.  Today we tend to take for granted the naturalness of science here, but it is actually a pretty recent and radical development.

To return to the question, “does your mother love you?”  Well, this is actually not really how a researcher would frame the question, as it is too specific to your case.  It doesn’t tell us much about the world at large, even if it does tell us something about you and your relationship with your mother.  A social science researcher might ask, “do mothers love their children?”  Or maybe they would be more interested in how this loving relationship might change over time (e.g., “do mothers love their children more now than they did in the 18th century when so many children died before reaching adulthood?”) or perhaps they might be interested in measuring quality of love across cultures or time periods, or even establishing “what love looks like” using the mother/child relationship as a site of exploration.  All of these make good research questions because we can use observable data to answer them.

What is Qualitative Research?

“All we know is how to learn. How to study, how to listen, how to talk, how to tell.  If we don’t tell the world, we don’t know the world.  We’re lost in it, we die.” -Ursula LeGuin, The Telling

At its simplest, qualitative research is research about the social world that does not use numbers in its analyses.  All those who fear statistics can breathe a sigh of relief – there are no mathematical formulae or regression models in this book! But this definition is less about what qualitative research can be and more about what it is not.  To be honest, any simple statement will fail to capture the power and depth of qualitative research.  One way of contrasting qualitative research to quantitative research is to note that the focus of qualitative research is less about explaining and predicting relationships between variables and more about understanding the social world.  To use our mother love example, the question about “what love looks like” is a good question for the qualitative researcher while all questions measuring love or comparing incidences of love (both of which require measurement) are good questions for quantitative researchers. Patton writes,

Qualitative data describe.  They take us, as readers, into the time and place of the observation so that we know what it was like to have been there.  They capture and communicate someone else’s experience of the world in his or her own words.  Qualitative data tell a story. ( Patton 2002:47 )

Qualitative researchers are asking different questions about the world than their quantitative colleagues.  Even when researchers are employed in “mixed methods” research ( both quantitative and qualitative), they are using different methods to address different questions of the study.  I do a lot of research about first-generation and working-college college students.  Where a quantitative researcher might ask, how many first-generation college students graduate from college within four years? Or does first-generation college status predict high student debt loads?  A qualitative researcher might ask, how does the college experience differ for first-generation college students?  What is it like to carry a lot of debt, and how does this impact the ability to complete college on time?  Both sets of questions are important, but they can only be answered using specific tools tailored to those questions.  For the former, you need large numbers to make adequate comparisons.  For the latter, you need to talk to people, find out what they are thinking and feeling, and try to inhabit their shoes for a little while so you can make sense of their experiences and beliefs.

Examples of Qualitative Research

You have probably seen examples of qualitative research before, but you might not have paid particular attention to how they were produced or realized that the accounts you were reading were the result of hours, months, even years of research “in the field.”  A good qualitative researcher will present the product of their hours of work in such a way that it seems natural, even obvious, to the reader.  Because we are trying to convey what it is like answers, qualitative research is often presented as stories – stories about how people live their lives, go to work, raise their children, interact with one another.  In some ways, this can seem like reading particularly insightful novels.  But, unlike novels, there are very specific rules and guidelines that qualitative researchers follow to ensure that the “story” they are telling is accurate , a truthful rendition of what life is like for the people being studied.  Most of this textbook will be spent conveying those rules and guidelines.  Let’s take a look, first, however, at three examples of what the end product looks like.  I have chosen these three examples to showcase very different approaches to qualitative research, and I will return to these five examples throughout the book.  They were all published as whole books (not chapters or articles), and they are worth the long read, if you have the time.  I will also provide some information on how these books came to be and the length of time it takes to get them into book version.  It is important you know about this process, and the rest of this textbook will help explain why it takes so long to conduct good qualitative research!

Example 1 : The End Game (ethnography + interviews)

Corey Abramson is a sociologist who teaches at the University of Arizona.   In 2015 he published The End Game: How Inequality Shapes our Final Years ( 2015 ). This book was based on the research he did for his dissertation at the University of California-Berkeley in 2012.  Actually, the dissertation was completed in 2012 but the work that was produced that took several years.  The dissertation was entitled, “This is How We Live, This is How We Die: Social Stratification, Aging, and Health in Urban America” ( 2012 ).  You can see how the book version, which was written for a more general audience, has a more engaging sound to it, but that the dissertation version, which is what academic faculty read and evaluate, has a more descriptive title.  You can read the title and know that this is a study about aging and health and that the focus is going to be inequality and that the context (place) is going to be “urban America.”  It’s a study about “how” people do something – in this case, how they deal with aging and death.  This is the very first sentence of the dissertation, “From our first breath in the hospital to the day we die, we live in a society characterized by unequal opportunities for maintaining health and taking care of ourselves when ill.  These disparities reflect persistent racial, socio-economic, and gender-based inequalities and contribute to their persistence over time” ( 1 ).  What follows is a truthful account of how that is so.

Cory Abramson spent three years conducting his research in four different urban neighborhoods.  We call the type of research he conducted “comparative ethnographic” because he designed his study to compare groups of seniors as they went about their everyday business.  It’s comparative because he is comparing different groups (based on race, class, gender) and ethnographic because he is studying the culture/way of life of a group. [4]   He had an educated guess, rooted in what previous research had shown and what social theory would suggest, that people’s experiences of aging differ by race, class, and gender.  So, he set up a research design that would allow him to observe differences.  He chose two primarily middle-class (one was racially diverse and the other was predominantly White) and two primarily poor neighborhoods (one was racially diverse and the other was predominantly African American).  He hung out in senior centers and other places seniors congregated, watched them as they took the bus to get prescriptions filled, sat in doctor’s offices with them, and listened to their conversations with each other.  He also conducted more formal conversations, what we call in-depth interviews, with sixty seniors from each of the four neighborhoods.  As with a lot of fieldwork , as he got closer to the people involved, he both expanded and deepened his reach –

By the end of the project, I expanded my pool of general observations to include various settings frequented by seniors: apartment building common rooms, doctors’ offices, emergency rooms, pharmacies, senior centers, bars, parks, corner stores, shopping centers, pool halls, hair salons, coffee shops, and discount stores. Over the course of the three years of fieldwork, I observed hundreds of elders, and developed close relationships with a number of them. ( 2012:10 )

When Abramson rewrote the dissertation for a general audience and published his book in 2015, it got a lot of attention.  It is a beautifully written book and it provided insight into a common human experience that we surprisingly know very little about.  It won the Outstanding Publication Award by the American Sociological Association Section on Aging and the Life Course and was featured in the New York Times .  The book was about aging, and specifically how inequality shapes the aging process, but it was also about much more than that.  It helped show how inequality affects people’s everyday lives.  For example, by observing the difficulties the poor had in setting up appointments and getting to them using public transportation and then being made to wait to see a doctor, sometimes in standing-room-only situations, when they are unwell, and then being treated dismissively by hospital staff, Abramson allowed readers to feel the material reality of being poor in the US.  Comparing these examples with seniors with adequate supplemental insurance who have the resources to hire car services or have others assist them in arranging care when they need it, jolts the reader to understand and appreciate the difference money makes in the lives and circumstances of us all, and in a way that is different than simply reading a statistic (“80% of the poor do not keep regular doctor’s appointments”) does.  Qualitative research can reach into spaces and places that often go unexamined and then reports back to the rest of us what it is like in those spaces and places.

Example 2: Racing for Innocence (Interviews + Content Analysis + Fictional Stories)

Jennifer Pierce is a Professor of American Studies at the University of Minnesota.  Trained as a sociologist, she has written a number of books about gender, race, and power.  Her very first book, Gender Trials: Emotional Lives in Contemporary Law Firms, published in 1995, is a brilliant look at gender dynamics within two law firms.  Pierce was a participant observer, working as a paralegal, and she observed how female lawyers and female paralegals struggled to obtain parity with their male colleagues.

Fifteen years later, she reexamined the context of the law firm to include an examination of racial dynamics, particularly how elite white men working in these spaces created and maintained a culture that made it difficult for both female attorneys and attorneys of color to thrive. Her book, Racing for Innocence: Whiteness, Gender, and the Backlash Against Affirmative Action , published in 2012, is an interesting and creative blending of interviews with attorneys, content analyses of popular films during this period, and fictional accounts of racial discrimination and sexual harassment.  The law firm she chose to study had come under an affirmative action order and was in the process of implementing equitable policies and programs.  She wanted to understand how recipients of white privilege (the elite white male attorneys) come to deny the role they play in reproducing inequality.  Through interviews with attorneys who were present both before and during the affirmative action order, she creates a historical record of the “bad behavior” that necessitated new policies and procedures, but also, and more importantly , probed the participants ’ understanding of this behavior.  It should come as no surprise that most (but not all) of the white male attorneys saw little need for change, and that almost everyone else had accounts that were different if not sometimes downright harrowing.

I’ve used Pierce’s book in my qualitative research methods courses as an example of an interesting blend of techniques and presentation styles.  My students often have a very difficult time with the fictional accounts she includes.  But they serve an important communicative purpose here.  They are her attempts at presenting “both sides” to an objective reality – something happens (Pierce writes this something so it is very clear what it is), and the two participants to the thing that happened have very different understandings of what this means.  By including these stories, Pierce presents one of her key findings – people remember things differently and these different memories tend to support their own ideological positions.  I wonder what Pierce would have written had she studied the murder of George Floyd or the storming of the US Capitol on January 6 or any number of other historic events whose observers and participants record very different happenings.

This is not to say that qualitative researchers write fictional accounts.  In fact, the use of fiction in our work remains controversial.  When used, it must be clearly identified as a presentation device, as Pierce did.  I include Racing for Innocence here as an example of the multiple uses of methods and techniques and the way that these work together to produce better understandings by us, the readers, of what Pierce studied.  We readers come away with a better grasp of how and why advantaged people understate their own involvement in situations and structures that advantage them.  This is normal human behavior , in other words.  This case may have been about elite white men in law firms, but the general insights here can be transposed to other settings.  Indeed, Pierce argues that more research needs to be done about the role elites play in the reproduction of inequality in the workplace in general.

Example 3: Amplified Advantage (Mixed Methods: Survey Interviews + Focus Groups + Archives)

The final example comes from my own work with college students, particularly the ways in which class background affects the experience of college and outcomes for graduates.  I include it here as an example of mixed methods, and for the use of supplementary archival research.  I’ve done a lot of research over the years on first-generation, low-income, and working-class college students.  I am curious (and skeptical) about the possibility of social mobility today, particularly with the rising cost of college and growing inequality in general.  As one of the few people in my family to go to college, I didn’t grow up with a lot of examples of what college was like or how to make the most of it.  And when I entered graduate school, I realized with dismay that there were very few people like me there.  I worried about becoming too different from my family and friends back home.  And I wasn’t at all sure that I would ever be able to pay back the huge load of debt I was taking on.  And so I wrote my dissertation and first two books about working-class college students.  These books focused on experiences in college and the difficulties of navigating between family and school ( Hurst 2010a, 2012 ).  But even after all that research, I kept coming back to wondering if working-class students who made it through college had an equal chance at finding good jobs and happy lives,

What happens to students after college?  Do working-class students fare as well as their peers?  I knew from my own experience that barriers continued through graduate school and beyond, and that my debtload was higher than that of my peers, constraining some of the choices I made when I graduated.  To answer these questions, I designed a study of students attending small liberal arts colleges, the type of college that tried to equalize the experience of students by requiring all students to live on campus and offering small classes with lots of interaction with faculty.  These private colleges tend to have more money and resources so they can provide financial aid to low-income students.  They also attract some very wealthy students.  Because they enroll students across the class spectrum, I would be able to draw comparisons.  I ended up spending about four years collecting data, both a survey of more than 2000 students (which formed the basis for quantitative analyses) and qualitative data collection (interviews, focus groups, archival research, and participant observation).  This is what we call a “mixed methods” approach because we use both quantitative and qualitative data.  The survey gave me a large enough number of students that I could make comparisons of the how many kind, and to be able to say with some authority that there were in fact significant differences in experience and outcome by class (e.g., wealthier students earned more money and had little debt; working-class students often found jobs that were not in their chosen careers and were very affected by debt, upper-middle-class students were more likely to go to graduate school).  But the survey analyses could not explain why these differences existed.  For that, I needed to talk to people and ask them about their motivations and aspirations.  I needed to understand their perceptions of the world, and it is very hard to do this through a survey.

By interviewing students and recent graduates, I was able to discern particular patterns and pathways through college and beyond.  Specifically, I identified three versions of gameplay.  Upper-middle-class students, whose parents were themselves professionals (academics, lawyers, managers of non-profits), saw college as the first stage of their education and took classes and declared majors that would prepare them for graduate school.  They also spent a lot of time building their resumes, taking advantage of opportunities to help professors with their research, or study abroad.  This helped them gain admission to highly-ranked graduate schools and interesting jobs in the public sector.  In contrast, upper-class students, whose parents were wealthy and more likely to be engaged in business (as CEOs or other high-level directors), prioritized building social capital.  They did this by joining fraternities and sororities and playing club sports.  This helped them when they graduated as they called on friends and parents of friends to find them well-paying jobs.  Finally, low-income, first-generation, and working-class students were often adrift.  They took the classes that were recommended to them but without the knowledge of how to connect them to life beyond college.  They spent time working and studying rather than partying or building their resumes.  All three sets of students thought they were “doing college” the right way, the way that one was supposed to do college.   But these three versions of gameplay led to distinct outcomes that advantaged some students over others.  I titled my work “Amplified Advantage” to highlight this process.

These three examples, Cory Abramson’s The End Game , Jennifer Peirce’s Racing for Innocence, and my own Amplified Advantage, demonstrate the range of approaches and tools available to the qualitative researcher.  They also help explain why qualitative research is so important.  Numbers can tell us some things about the world, but they cannot get at the hearts and minds, motivations and beliefs of the people who make up the social worlds we inhabit.  For that, we need tools that allow us to listen and make sense of what people tell us and show us.  That is what good qualitative research offers us.

How Is This Book Organized?

This textbook is organized as a comprehensive introduction to the use of qualitative research methods.  The first half covers general topics (e.g., approaches to qualitative research, ethics) and research design (necessary steps for building a successful qualitative research study).  The second half reviews various data collection and data analysis techniques.  Of course, building a successful qualitative research study requires some knowledge of data collection and data analysis so the chapters in the first half and the chapters in the second half should be read in conversation with each other.  That said, each chapter can be read on its own for assistance with a particular narrow topic.  In addition to the chapters, a helpful glossary can be found in the back of the book.  Rummage around in the text as needed.

Chapter Descriptions

Chapter 2 provides an overview of the Research Design Process.  How does one begin a study? What is an appropriate research question?  How is the study to be done – with what methods ?  Involving what people and sites?  Although qualitative research studies can and often do change and develop over the course of data collection, it is important to have a good idea of what the aims and goals of your study are at the outset and a good plan of how to achieve those aims and goals.  Chapter 2 provides a road map of the process.

Chapter 3 describes and explains various ways of knowing the (social) world.  What is it possible for us to know about how other people think or why they behave the way they do?  What does it mean to say something is a “fact” or that it is “well-known” and understood?  Qualitative researchers are particularly interested in these questions because of the types of research questions we are interested in answering (the how questions rather than the how many questions of quantitative research).  Qualitative researchers have adopted various epistemological approaches.  Chapter 3 will explore these approaches, highlighting interpretivist approaches that acknowledge the subjective aspect of reality – in other words, reality and knowledge are not objective but rather influenced by (interpreted through) people.

Chapter 4 focuses on the practical matter of developing a research question and finding the right approach to data collection.  In any given study (think of Cory Abramson’s study of aging, for example), there may be years of collected data, thousands of observations , hundreds of pages of notes to read and review and make sense of.  If all you had was a general interest area (“aging”), it would be very difficult, nearly impossible, to make sense of all of that data.  The research question provides a helpful lens to refine and clarify (and simplify) everything you find and collect.  For that reason, it is important to pull out that lens (articulate the research question) before you get started.  In the case of the aging study, Cory Abramson was interested in how inequalities affected understandings and responses to aging.  It is for this reason he designed a study that would allow him to compare different groups of seniors (some middle-class, some poor).  Inevitably, he saw much more in the three years in the field than what made it into his book (or dissertation), but he was able to narrow down the complexity of the social world to provide us with this rich account linked to the original research question.  Developing a good research question is thus crucial to effective design and a successful outcome.  Chapter 4 will provide pointers on how to do this.  Chapter 4 also provides an overview of general approaches taken to doing qualitative research and various “traditions of inquiry.”

Chapter 5 explores sampling .  After you have developed a research question and have a general idea of how you will collect data (Observations?  Interviews?), how do you go about actually finding people and sites to study?  Although there is no “correct number” of people to interview , the sample should follow the research question and research design.  Unlike quantitative research, qualitative research involves nonprobability sampling.  Chapter 5 explains why this is so and what qualities instead make a good sample for qualitative research.

Chapter 6 addresses the importance of reflexivity in qualitative research.  Related to epistemological issues of how we know anything about the social world, qualitative researchers understand that we the researchers can never be truly neutral or outside the study we are conducting.  As observers, we see things that make sense to us and may entirely miss what is either too obvious to note or too different to comprehend.  As interviewers, as much as we would like to ask questions neutrally and remain in the background, interviews are a form of conversation, and the persons we interview are responding to us .  Therefore, it is important to reflect upon our social positions and the knowledges and expectations we bring to our work and to work through any blind spots that we may have.  Chapter 6 provides some examples of reflexivity in practice and exercises for thinking through one’s own biases.

Chapter 7 is a very important chapter and should not be overlooked.  As a practical matter, it should also be read closely with chapters 6 and 8.  Because qualitative researchers deal with people and the social world, it is imperative they develop and adhere to a strong ethical code for conducting research in a way that does not harm.  There are legal requirements and guidelines for doing so (see chapter 8), but these requirements should not be considered synonymous with the ethical code required of us.   Each researcher must constantly interrogate every aspect of their research, from research question to design to sample through analysis and presentation, to ensure that a minimum of harm (ideally, zero harm) is caused.  Because each research project is unique, the standards of care for each study are unique.  Part of being a professional researcher is carrying this code in one’s heart, being constantly attentive to what is required under particular circumstances.  Chapter 7 provides various research scenarios and asks readers to weigh in on the suitability and appropriateness of the research.  If done in a class setting, it will become obvious fairly quickly that there are often no absolutely correct answers, as different people find different aspects of the scenarios of greatest importance.  Minimizing the harm in one area may require possible harm in another.  Being attentive to all the ethical aspects of one’s research and making the best judgments one can, clearly and consciously, is an integral part of being a good researcher.

Chapter 8 , best to be read in conjunction with chapter 7, explains the role and importance of Institutional Review Boards (IRBs) .  Under federal guidelines, an IRB is an appropriately constituted group that has been formally designated to review and monitor research involving human subjects .  Every institution that receives funding from the federal government has an IRB.  IRBs have the authority to approve, require modifications to (to secure approval), or disapprove research.  This group review serves an important role in the protection of the rights and welfare of human research subjects.  Chapter 8 reviews the history of IRBs and the work they do but also argues that IRBs’ review of qualitative research is often both over-inclusive and under-inclusive.  Some aspects of qualitative research are not well understood by IRBs, given that they were developed to prevent abuses in biomedical research.  Thus, it is important not to rely on IRBs to identify all the potential ethical issues that emerge in our research (see chapter 7).

Chapter 9 provides help for getting started on formulating a research question based on gaps in the pre-existing literature.  Research is conducted as part of a community, even if particular studies are done by single individuals (or small teams).  What any of us finds and reports back becomes part of a much larger body of knowledge.  Thus, it is important that we look at the larger body of knowledge before we actually start our bit to see how we can best contribute.  When I first began interviewing working-class college students, there was only one other similar study I could find, and it hadn’t been published (it was a dissertation of students from poor backgrounds).  But there had been a lot published by professors who had grown up working class and made it through college despite the odds.  These accounts by “working-class academics” became an important inspiration for my study and helped me frame the questions I asked the students I interviewed.  Chapter 9 will provide some pointers on how to search for relevant literature and how to use this to refine your research question.

Chapter 10 serves as a bridge between the two parts of the textbook, by introducing techniques of data collection.  Qualitative research is often characterized by the form of data collection – for example, an ethnographic study is one that employs primarily observational data collection for the purpose of documenting and presenting a particular culture or ethnos.  Techniques can be effectively combined, depending on the research question and the aims and goals of the study.   Chapter 10 provides a general overview of all the various techniques and how they can be combined.

The second part of the textbook moves into the doing part of qualitative research once the research question has been articulated and the study designed.  Chapters 11 through 17 cover various data collection techniques and approaches.  Chapters 18 and 19 provide a very simple overview of basic data analysis.  Chapter 20 covers communication of the data to various audiences, and in various formats.

Chapter 11 begins our overview of data collection techniques with a focus on interviewing , the true heart of qualitative research.  This technique can serve as the primary and exclusive form of data collection, or it can be used to supplement other forms (observation, archival).  An interview is distinct from a survey, where questions are asked in a specific order and often with a range of predetermined responses available.  Interviews can be conversational and unstructured or, more conventionally, semistructured , where a general set of interview questions “guides” the conversation.  Chapter 11 covers the basics of interviews: how to create interview guides, how many people to interview, where to conduct the interview, what to watch out for (how to prepare against things going wrong), and how to get the most out of your interviews.

Chapter 12 covers an important variant of interviewing, the focus group.  Focus groups are semistructured interviews with a group of people moderated by a facilitator (the researcher or researcher’s assistant).  Focus groups explicitly use group interaction to assist in the data collection.  They are best used to collect data on a specific topic that is non-personal and shared among the group.  For example, asking a group of college students about a common experience such as taking classes by remote delivery during the pandemic year of 2020.  Chapter 12 covers the basics of focus groups: when to use them, how to create interview guides for them, and how to run them effectively.

Chapter 13 moves away from interviewing to the second major form of data collection unique to qualitative researchers – observation .  Qualitative research that employs observation can best be understood as falling on a continuum of “fly on the wall” observation (e.g., observing how strangers interact in a doctor’s waiting room) to “participant” observation, where the researcher is also an active participant of the activity being observed.  For example, an activist in the Black Lives Matter movement might want to study the movement, using her inside position to gain access to observe key meetings and interactions.  Chapter  13 covers the basics of participant observation studies: advantages and disadvantages, gaining access, ethical concerns related to insider/outsider status and entanglement, and recording techniques.

Chapter 14 takes a closer look at “deep ethnography” – immersion in the field of a particularly long duration for the purpose of gaining a deeper understanding and appreciation of a particular culture or social world.  Clifford Geertz called this “deep hanging out.”  Whereas participant observation is often combined with semistructured interview techniques, deep ethnography’s commitment to “living the life” or experiencing the situation as it really is demands more conversational and natural interactions with people.  These interactions and conversations may take place over months or even years.  As can be expected, there are some costs to this technique, as well as some very large rewards when done competently.  Chapter 14 provides some examples of deep ethnographies that will inspire some beginning researchers and intimidate others.

Chapter 15 moves in the opposite direction of deep ethnography, a technique that is the least positivist of all those discussed here, to mixed methods , a set of techniques that is arguably the most positivist .  A mixed methods approach combines both qualitative data collection and quantitative data collection, commonly by combining a survey that is analyzed statistically (e.g., cross-tabs or regression analyses of large number probability samples) with semi-structured interviews.  Although it is somewhat unconventional to discuss mixed methods in textbooks on qualitative research, I think it is important to recognize this often-employed approach here.  There are several advantages and some disadvantages to taking this route.  Chapter 16 will describe those advantages and disadvantages and provide some particular guidance on how to design a mixed methods study for maximum effectiveness.

Chapter 16 covers data collection that does not involve live human subjects at all – archival and historical research (chapter 17 will also cover data that does not involve interacting with human subjects).  Sometimes people are unavailable to us, either because they do not wish to be interviewed or observed (as is the case with many “elites”) or because they are too far away, in both place and time.  Fortunately, humans leave many traces and we can often answer questions we have by examining those traces.  Special collections and archives can be goldmines for social science research.  This chapter will explain how to access these places, for what purposes, and how to begin to make sense of what you find.

Chapter 17 covers another data collection area that does not involve face-to-face interaction with humans: content analysis .  Although content analysis may be understood more properly as a data analysis technique, the term is often used for the entire approach, which will be the case here.  Content analysis involves interpreting meaning from a body of text.  This body of text might be something found in historical records (see chapter 16) or something collected by the researcher, as in the case of comment posts on a popular blog post.  I once used the stories told by student loan debtors on the website studentloanjustice.org as the content I analyzed.  Content analysis is particularly useful when attempting to define and understand prevalent stories or communication about a topic of interest.  In other words, when we are less interested in what particular people (our defined sample) are doing or believing and more interested in what general narratives exist about a particular topic or issue.  This chapter will explore different approaches to content analysis and provide helpful tips on how to collect data, how to turn that data into codes for analysis, and how to go about presenting what is found through analysis.

Where chapter 17 has pushed us towards data analysis, chapters 18 and 19 are all about what to do with the data collected, whether that data be in the form of interview transcripts or fieldnotes from observations.  Chapter 18 introduces the basics of coding , the iterative process of assigning meaning to the data in order to both simplify and identify patterns.  What is a code and how does it work?  What are the different ways of coding data, and when should you use them?  What is a codebook, and why do you need one?  What does the process of data analysis look like?

Chapter 19 goes further into detail on codes and how to use them, particularly the later stages of coding in which our codes are refined, simplified, combined, and organized.  These later rounds of coding are essential to getting the most out of the data we’ve collected.  As students are often overwhelmed with the amount of data (a corpus of interview transcripts typically runs into the hundreds of pages; fieldnotes can easily top that), this chapter will also address time management and provide suggestions for dealing with chaos and reminders that feeling overwhelmed at the analysis stage is part of the process.  By the end of the chapter, you should understand how “findings” are actually found.

The book concludes with a chapter dedicated to the effective presentation of data results.  Chapter 20 covers the many ways that researchers communicate their studies to various audiences (academic, personal, political), what elements must be included in these various publications, and the hallmarks of excellent qualitative research that various audiences will be expecting.  Because qualitative researchers are motivated by understanding and conveying meaning , effective communication is not only an essential skill but a fundamental facet of the entire research project.  Ethnographers must be able to convey a certain sense of verisimilitude , the appearance of true reality.  Those employing interviews must faithfully depict the key meanings of the people they interviewed in a way that rings true to those people, even if the end result surprises them.  And all researchers must strive for clarity in their publications so that various audiences can understand what was found and why it is important.

The book concludes with a short chapter ( chapter 21 ) discussing the value of qualitative research. At the very end of this book, you will find a glossary of terms. I recommend you make frequent use of the glossary and add to each entry as you find examples. Although the entries are meant to be simple and clear, you may also want to paraphrase the definition—make it “make sense” to you, in other words. In addition to the standard reference list (all works cited here), you will find various recommendations for further reading at the end of many chapters. Some of these recommendations will be examples of excellent qualitative research, indicated with an asterisk (*) at the end of the entry. As they say, a picture is worth a thousand words. A good example of qualitative research can teach you more about conducting research than any textbook can (this one included). I highly recommend you select one to three examples from these lists and read them along with the textbook.

A final note on the choice of examples – you will note that many of the examples used in the text come from research on college students.  This is for two reasons.  First, as most of my research falls in this area, I am most familiar with this literature and have contacts with those who do research here and can call upon them to share their stories with you.  Second, and more importantly, my hope is that this textbook reaches a wide audience of beginning researchers who study widely and deeply across the range of what can be known about the social world (from marine resources management to public policy to nursing to political science to sexuality studies and beyond).  It is sometimes difficult to find examples that speak to all those research interests, however. A focus on college students is something that all readers can understand and, hopefully, appreciate, as we are all now or have been at some point a college student.

Recommended Reading: Other Qualitative Research Textbooks

I’ve included a brief list of some of my favorite qualitative research textbooks and guidebooks if you need more than what you will find in this introductory text.  For each, I’ve also indicated if these are for “beginning” or “advanced” (graduate-level) readers.  Many of these books have several editions that do not significantly vary; the edition recommended is merely the edition I have used in teaching and to whose page numbers any specific references made in the text agree.

Barbour, Rosaline. 2014. Introducing Qualitative Research: A Student’s Guide. Thousand Oaks, CA: SAGE.  A good introduction to qualitative research, with abundant examples (often from the discipline of health care) and clear definitions.  Includes quick summaries at the ends of each chapter.  However, some US students might find the British context distracting and can be a bit advanced in some places.  Beginning .

Bloomberg, Linda Dale, and Marie F. Volpe. 2012. Completing Your Qualitative Dissertation . 2nd ed. Thousand Oaks, CA: SAGE.  Specifically designed to guide graduate students through the research process. Advanced .

Creswell, John W., and Cheryl Poth. 2018 Qualitative Inquiry and Research Design: Choosing among Five Traditions .  4th ed. Thousand Oaks, CA: SAGE.  This is a classic and one of the go-to books I used myself as a graduate student.  One of the best things about this text is its clear presentation of five distinct traditions in qualitative research.  Despite the title, this reasonably sized book is about more than research design, including both data analysis and how to write about qualitative research.  Advanced .

Lareau, Annette. 2021. Listening to People: A Practical Guide to Interviewing, Participant Observation, Data Analysis, and Writing It All Up .  Chicago: University of Chicago Press. A readable and personal account of conducting qualitative research by an eminent sociologist, with a heavy emphasis on the kinds of participant-observation research conducted by the author.  Despite its reader-friendliness, this is really a book targeted to graduate students learning the craft.  Advanced .

Lune, Howard, and Bruce L. Berg. 2018. 9th edition.  Qualitative Research Methods for the Social Sciences.  Pearson . Although a good introduction to qualitative methods, the authors favor symbolic interactionist and dramaturgical approaches, which limits the appeal primarily to sociologists.  Beginning .

Marshall, Catherine, and Gretchen B. Rossman. 2016. 6th edition. Designing Qualitative Research. Thousand Oaks, CA: SAGE.  Very readable and accessible guide to research design by two educational scholars.  Although the presentation is sometimes fairly dry, personal vignettes and illustrations enliven the text.  Beginning .

Maxwell, Joseph A. 2013. Qualitative Research Design: An Interactive Approach .  3rd ed. Thousand Oaks, CA: SAGE. A short and accessible introduction to qualitative research design, particularly helpful for graduate students contemplating theses and dissertations. This has been a standard textbook in my graduate-level courses for years.  Advanced .

Patton, Michael Quinn. 2002. Qualitative Research and Evaluation Methods . Thousand Oaks, CA: SAGE.  This is a comprehensive text that served as my “go-to” reference when I was a graduate student.  It is particularly helpful for those involved in program evaluation and other forms of evaluation studies and uses examples from a wide range of disciplines.  Advanced .

Rubin, Ashley T. 2021. Rocking Qualitative Social Science: An Irreverent Guide to Rigorous Research. Stanford : Stanford University Press.  A delightful and personal read.  Rubin uses rock climbing as an extended metaphor for learning how to conduct qualitative research.  A bit slanted toward ethnographic and archival methods of data collection, with frequent examples from her own studies in criminology. Beginning .

Weis, Lois, and Michelle Fine. 2000. Speed Bumps: A Student-Friendly Guide to Qualitative Research . New York: Teachers College Press.  Readable and accessibly written in a quasi-conversational style.  Particularly strong in its discussion of ethical issues throughout the qualitative research process.  Not comprehensive, however, and very much tied to ethnographic research.  Although designed for graduate students, this is a recommended read for students of all levels.  Beginning .

Patton’s Ten Suggestions for Doing Qualitative Research

The following ten suggestions were made by Michael Quinn Patton in his massive textbooks Qualitative Research and Evaluations Methods . This book is highly recommended for those of you who want more than an introduction to qualitative methods. It is the book I relied on heavily when I was a graduate student, although it is much easier to “dip into” when necessary than to read through as a whole. Patton is asked for “just one bit of advice” for a graduate student considering using qualitative research methods for their dissertation.  Here are his top ten responses, in short form, heavily paraphrased, and with additional comments and emphases from me:

• Make sure that a qualitative approach fits the research question. The following are the kinds of questions that call out for qualitative methods or where qualitative methods are particularly appropriate: questions about people’s experiences or how they make sense of those experiences; studying a person in their natural environment; researching a phenomenon so unknown that it would be impossible to study it with standardized instruments or other forms of quantitative data collection.
• Study qualitative research by going to the original sources for the design and analysis appropriate to the particular approach you want to take (e.g., read Glaser and Straus if you are using grounded theory )
• Find a dissertation adviser who understands or at least who will support your use of qualitative research methods. You are asking for trouble if your entire committee is populated by quantitative researchers, even if they are all very knowledgeable about the subject or focus of your study (maybe even more so if they are!)
• Really work on design. Doing qualitative research effectively takes a lot of planning.  Even if things are more flexible than in quantitative research, a good design is absolutely essential when starting out.
• Practice data collection techniques, particularly interviewing and observing. There is definitely a set of learned skills here!  Do not expect your first interview to be perfect.  You will continue to grow as a researcher the more interviews you conduct, and you will probably come to understand yourself a bit more in the process, too.  This is not easy, despite what others who don’t work with qualitative methods may assume (and tell you!)
• Have a plan for analysis before you begin data collection. This is often a requirement in IRB protocols , although you can get away with writing something fairly simple.  And even if you are taking an approach, such as grounded theory, that pushes you to remain fairly open-minded during the data collection process, you still want to know what you will be doing with all the data collected – creating a codebook? Writing analytical memos? Comparing cases?  Having a plan in hand will also help prevent you from collecting too much extraneous data.
• Be prepared to confront controversies both within the qualitative research community and between qualitative research and quantitative research. Don’t be naïve about this – qualitative research, particularly some approaches, will be derided by many more “positivist” researchers and audiences.  For example, is an “n” of 1 really sufficient?  Yes!  But not everyone will agree.
• Do not make the mistake of using qualitative research methods because someone told you it was easier, or because you are intimidated by the math required of statistical analyses. Qualitative research is difficult in its own way (and many would claim much more time-consuming than quantitative research).  Do it because you are convinced it is right for your goals, aims, and research questions.
• Find a good support network. This could be a research mentor, or it could be a group of friends or colleagues who are also using qualitative research, or it could be just someone who will listen to you work through all of the issues you will confront out in the field and during the writing process.  Even though qualitative research often involves human subjects, it can be pretty lonely.  A lot of times you will feel like you are working without a net.  You have to create one for yourself.  Take care of yourself.
• And, finally, in the words of Patton, “Prepare to be changed. Looking deeply at other people’s lives will force you to look deeply at yourself.”
• We will actually spend an entire chapter ( chapter 3 ) looking at this question in much more detail! ↵
• Note that this might have been news to Europeans at the time, but many other societies around the world had also come to this conclusion through observation.  There is often a tendency to equate “the scientific revolution” with the European world in which it took place, but this is somewhat misleading. ↵
• Historians are a special case here.  Historians have scrupulously and rigorously investigated the social world, but not for the purpose of understanding general laws about how things work, which is the point of scientific empirical research.  History is often referred to as an idiographic field of study, meaning that it studies things that happened or are happening in themselves and not for general observations or conclusions. ↵
• Don’t worry, we’ll spend more time later in this book unpacking the meaning of ethnography and other terms that are important here.  Note the available glossary ↵

An approach to research that is “multimethod in focus, involving an interpretative, naturalistic approach to its subject matter.  This means that qualitative researchers study things in their natural settings, attempting to make sense of, or interpret, phenomena in terms of the meanings people bring to them.  Qualitative research involves the studied use and collection of a variety of empirical materials – case study, personal experience, introspective, life story, interview, observational, historical, interactional, and visual texts – that describe routine and problematic moments and meanings in individuals’ lives." ( Denzin and Lincoln 2005:2 ). Contrast with quantitative research .

In contrast to methodology, methods are more simply the practices and tools used to collect and analyze data.  Examples of common methods in qualitative research are interviews , observations , and documentary analysis .  One’s methodology should connect to one’s choice of methods, of course, but they are distinguishable terms.  See also methodology .

A proposed explanation for an observation, phenomenon, or scientific problem that can be tested by further investigation.  The positing of a hypothesis is often the first step in quantitative research but not in qualitative research.  Even when qualitative researchers offer possible explanations in advance of conducting research, they will tend to not use the word “hypothesis” as it conjures up the kind of positivist research they are not conducting.

The foundational question to be addressed by the research study.  This will form the anchor of the research design, collection, and analysis.  Note that in qualitative research, the research question may, and probably will, alter or develop during the course of the research.

An approach to research that collects and analyzes numerical data for the purpose of finding patterns and averages, making predictions, testing causal relationships, and generalizing results to wider populations.  Contrast with qualitative research .

Data collection that takes place in real-world settings, referred to as “the field;” a key component of much Grounded Theory and ethnographic research.  Patton ( 2002 ) calls fieldwork “the central activity of qualitative inquiry” where “‘going into the field’ means having direct and personal contact with people under study in their own environments – getting close to people and situations being studied to personally understand the realities of minutiae of daily life” (48).

The people who are the subjects of a qualitative study.  In interview-based studies, they may be the respondents to the interviewer; for purposes of IRBs, they are often referred to as the human subjects of the research.

The branch of philosophy concerned with knowledge.  For researchers, it is important to recognize and adopt one of the many distinguishing epistemological perspectives as part of our understanding of what questions research can address or fully answer.  See, e.g., constructivism , subjectivism, and  objectivism .

An approach that refutes the possibility of neutrality in social science research.  All research is “guided by a set of beliefs and feelings about the world and how it should be understood and studied” (Denzin and Lincoln 2005: 13).  In contrast to positivism , interpretivism recognizes the social constructedness of reality, and researchers adopting this approach focus on capturing interpretations and understandings people have about the world rather than “the world” as it is (which is a chimera).

The cluster of data-collection tools and techniques that involve observing interactions between people, the behaviors, and practices of individuals (sometimes in contrast to what they say about how they act and behave), and cultures in context.  Observational methods are the key tools employed by ethnographers and Grounded Theory .

Research based on data collected and analyzed by the research (in contrast to secondary “library” research).

The process of selecting people or other units of analysis to represent a larger population. In quantitative research, this representation is taken quite literally, as statistically representative.  In qualitative research, in contrast, sample selection is often made based on potential to generate insight about a particular topic or phenomenon.

A method of data collection in which the researcher asks the participant questions; the answers to these questions are often recorded and transcribed verbatim. There are many different kinds of interviews - see also semistructured interview , structured interview , and unstructured interview .

The specific group of individuals that you will collect data from.  Contrast population.

The practice of being conscious of and reflective upon one’s own social location and presence when conducting research.  Because qualitative research often requires interaction with live humans, failing to take into account how one’s presence and prior expectations and social location affect the data collected and how analyzed may limit the reliability of the findings.  This remains true even when dealing with historical archives and other content.  Who we are matters when asking questions about how people experience the world because we, too, are a part of that world.

The science and practice of right conduct; in research, it is also the delineation of moral obligations towards research participants, communities to which we belong, and communities in which we conduct our research.

An administrative body established to protect the rights and welfare of human research subjects recruited to participate in research activities conducted under the auspices of the institution with which it is affiliated. The IRB is charged with the responsibility of reviewing all research involving human participants. The IRB is concerned with protecting the welfare, rights, and privacy of human subjects. The IRB has the authority to approve, disapprove, monitor, and require modifications in all research activities that fall within its jurisdiction as specified by both the federal regulations and institutional policy.

Research, according to US federal guidelines, that involves “a living individual about whom an investigator (whether professional or student) conducting research:  (1) Obtains information or biospecimens through intervention or interaction with the individual, and uses, studies, or analyzes the information or biospecimens; or  (2) Obtains, uses, studies, analyzes, or generates identifiable private information or identifiable biospecimens.”

One of the primary methodological traditions of inquiry in qualitative research, ethnography is the study of a group or group culture, largely through observational fieldwork supplemented by interviews. It is a form of fieldwork that may include participant-observation data collection. See chapter 14 for a discussion of deep ethnography. 

A form of interview that follows a standard guide of questions asked, although the order of the questions may change to match the particular needs of each individual interview subject, and probing “follow-up” questions are often added during the course of the interview.  The semi-structured interview is the primary form of interviewing used by qualitative researchers in the social sciences.  It is sometimes referred to as an “in-depth” interview.  See also interview and  interview guide .

A method of observational data collection taking place in a natural setting; a form of fieldwork .  The term encompasses a continuum of relative participation by the researcher (from full participant to “fly-on-the-wall” observer).  This is also sometimes referred to as ethnography , although the latter is characterized by a greater focus on the culture under observation.

A research design that employs both quantitative and qualitative methods, as in the case of a survey supplemented by interviews.

An epistemological perspective that posits the existence of reality through sensory experience similar to empiricism but goes further in denying any non-sensory basis of thought or consciousness.  In the social sciences, the term has roots in the proto-sociologist August Comte, who believed he could discern “laws” of society similar to the laws of natural science (e.g., gravity).  The term has come to mean the kinds of measurable and verifiable science conducted by quantitative researchers and is thus used pejoratively by some qualitative researchers interested in interpretation, consciousness, and human understanding.  Calling someone a “positivist” is often intended as an insult.  See also empiricism and objectivism.

A place or collection containing records, documents, or other materials of historical interest; most universities have an archive of material related to the university’s history, as well as other “special collections” that may be of interest to members of the community.

A method of both data collection and data analysis in which a given content (textual, visual, graphic) is examined systematically and rigorously to identify meanings, themes, patterns and assumptions.  Qualitative content analysis (QCA) is concerned with gathering and interpreting an existing body of material.    

A word or short phrase that symbolically assigns a summative, salient, essence-capturing, and/or evocative attribute for a portion of language-based or visual data (Saldaña 2021:5).

Usually a verbatim written record of an interview or focus group discussion.

The primary form of data for fieldwork , participant observation , and ethnography .  These notes, taken by the researcher either during the course of fieldwork or at day’s end, should include as many details as possible on what was observed and what was said.  They should include clear identifiers of date, time, setting, and names (or identifying characteristics) of participants.

The process of labeling and organizing qualitative data to identify different themes and the relationships between them; a way of simplifying data to allow better management and retrieval of key themes and illustrative passages.  See coding frame and  codebook.

A methodological tradition of inquiry and approach to analyzing qualitative data in which theories emerge from a rigorous and systematic process of induction.  This approach was pioneered by the sociologists Glaser and Strauss (1967).  The elements of theory generated from comparative analysis of data are, first, conceptual categories and their properties and, second, hypotheses or generalized relations among the categories and their properties – “The constant comparing of many groups draws the [researcher’s] attention to their many similarities and differences.  Considering these leads [the researcher] to generate abstract categories and their properties, which, since they emerge from the data, will clearly be important to a theory explaining the kind of behavior under observation.” (36).

A detailed description of any proposed research that involves human subjects for review by IRB.  The protocol serves as the recipe for the conduct of the research activity.  It includes the scientific rationale to justify the conduct of the study, the information necessary to conduct the study, the plan for managing and analyzing the data, and a discussion of the research ethical issues relevant to the research.  Protocols for qualitative research often include interview guides, all documents related to recruitment, informed consent forms, very clear guidelines on the safekeeping of materials collected, and plans for de-identifying transcripts or other data that include personal identifying information.

Introduction to Qualitative Research Methods Copyright © 2023 by Allison Hurst is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License , except where otherwise noted.

Qualitative Study

Affiliations.

• 1 University of Nebraska Medical Center
• 2 GDB Research and Statistical Consulting
• 3 GDB Research and Statistical Consulting/McLaren Macomb Hospital
• PMID: 29262162
• Bookshelf ID: NBK470395

Qualitative research is a type of research that explores and provides deeper insights into real-world problems. Instead of collecting numerical data points or intervening or introducing treatments just like in quantitative research, qualitative research helps generate hypothenar to further investigate and understand quantitative data. Qualitative research gathers participants' experiences, perceptions, and behavior. It answers the hows and whys instead of how many or how much. It could be structured as a standalone study, purely relying on qualitative data, or part of mixed-methods research that combines qualitative and quantitative data. This review introduces the readers to some basic concepts, definitions, terminology, and applications of qualitative research.

Qualitative research, at its core, asks open-ended questions whose answers are not easily put into numbers, such as "how" and "why." Due to the open-ended nature of the research questions, qualitative research design is often not linear like quantitative design. One of the strengths of qualitative research is its ability to explain processes and patterns of human behavior that can be difficult to quantify. Phenomena such as experiences, attitudes, and behaviors can be complex to capture accurately and quantitatively. In contrast, a qualitative approach allows participants themselves to explain how, why, or what they were thinking, feeling, and experiencing at a particular time or during an event of interest. Quantifying qualitative data certainly is possible, but at its core, qualitative data is looking for themes and patterns that can be difficult to quantify, and it is essential to ensure that the context and narrative of qualitative work are not lost by trying to quantify something that is not meant to be quantified.

However, while qualitative research is sometimes placed in opposition to quantitative research, where they are necessarily opposites and therefore "compete" against each other and the philosophical paradigms associated with each other, qualitative and quantitative work are neither necessarily opposites, nor are they incompatible. While qualitative and quantitative approaches are different, they are not necessarily opposites and certainly not mutually exclusive. For instance, qualitative research can help expand and deepen understanding of data or results obtained from quantitative analysis. For example, say a quantitative analysis has determined a correlation between length of stay and level of patient satisfaction, but why does this correlation exist? This dual-focus scenario shows one way in which qualitative and quantitative research could be integrated.

Copyright © 2024, StatPearls Publishing LLC.

• Introduction
• Issues of Concern
• Clinical Significance
• Enhancing Healthcare Team Outcomes
• Review Questions

Publication types

• Study Guide

Qualitative Research : Definition

Qualitative research is the naturalistic study of social meanings and processes, using interviews, observations, and the analysis of texts and images.  In contrast to quantitative researchers, whose statistical methods enable broad generalizations about populations (for example, comparisons of the percentages of U.S. demographic groups who vote in particular ways), qualitative researchers use in-depth studies of the social world to analyze how and why groups think and act in particular ways (for instance, case studies of the experiences that shape political views).   

Events and Workshops

• Introduction to NVivo Have you just collected your data and wondered what to do next? Come join us for an introductory session on utilizing NVivo to support your analytical process. This session will only cover features of the software and how to import your records. Please feel free to attend any of the following sessions below: April 25th, 2024 12:30 pm - 1:45 pm Green Library - SVA Conference Room 125 May 9th, 2024 12:30 pm - 1:45 pm Green Library - SVA Conference Room 125
• Next: Choose an approach >>
• Choose an approach
• Find studies
• Learn methods
• Getting Started
• Get software
• Get data for secondary analysis
• Network with researchers

• Last Updated: May 23, 2024 1:27 PM
• URL: https://guides.library.stanford.edu/qualitative_research

• Open access
• Published: 29 May 2024

Paramedics’ experiences of barriers to, and enablers of, responding to suspected or confirmed COVID-19 cases: a qualitative study

• Ursula Howarth 1 ,
• Peta-Anne Zimmerman 2 , 3 , 4 , 5 ,
• Thea F. van de Mortel 2 &
• Nigel Barr 6  

BMC Health Services Research volume  24 , Article number:  678 ( 2024 ) Cite this article

28 Accesses

2 Altmetric

Metrics details

Paramedics’ work, even pre-pandemic, can be confronting and dangerous. As pandemics add extra stressors, the study explored paramedics’ lived experience of the barriers to, and enablers of, responding to suspected or confirmed Coronavirus Disease 2019 (COVID-19) cases.

This exploratory-descriptive qualitative study used semi-structured interviews to investigate Queensland metropolitan paramedics’ experiences of responding to cases during the COVID-19 pandemic. Interview transcripts were analysed using thematic analysis. Registered Paramedics were recruited by criterion sampling of staff who experienced the COVID-19 pandemic as active officers.

Nine registered paramedics participated. Five themes emerged: communication, fear and risk, work-related protective factors, leadership, and change. Unique barriers included impacts on effective communication due to the mobile nature of paramedicine, inconsistent policies/procedures between different healthcare facilities, dispatch of incorrect information to paramedics, assisting people to navigate the changing healthcare system, and wearing personal protective equipment in hot, humid environments. A lower perceived risk from COVID-19, and increased empathy after recovering from COVID-19 were unique enablers.

Conclusions

This study uncovered barriers and enablers to attending suspected or confirmed COVID-19 cases unique to paramedicine, often stemming from the mobile nature of prehospital care, and identifies the need for further research in paramedicine post-pandemic to better understand how paramedics can be supported during public health emergencies to ensure uninterrupted ambulance service delivery.

Peer Review reports

Introduction

The COVID-19 pandemic disrupted healthcare globally and significantly impacted lives, including those of paramedics who perform essential frontline health care [ 1 ]. In Australia, emergency ambulance services are run/contracted by the state/territory and most qualified paramedics have a paramedicine diploma or degree and can provide advanced life support [ 2 ].

Prior to the COVID-19 pandemic, lessons learnt from other healthcare settings about processes of care and behaviours during disaster and emergency responses were applied to the prehospital environment [ 3 , 4 ]. A recent review [ 5 ] found only nine studies that included the paramedic experience of the COVID-19 pandemic, with various foci, including leadership strategies, psychological/social wellbeing or resilience, attitudes and stressors, and knowledge and preparedness; while including two Australian studies [ 6 , 7 ], none focused specifically on the experiences of paramedics in attending suspected or confirmed COVID-19 cases to examine the barriers to, and enablers of, responding to those cases. Exploring paramedics’ experience of responding under COVID-19 specific conditions may provide insights into how to increase the willingness of paramedics to respond during future public health emergencies to ensure uninterrupted ambulance service access and delivery.

This research sought to understand paramedics’ lived experience during the COVID-19 pandemic. The research question was ‘What were Queensland metropolitan paramedics’ experiences of barriers to, and enablers of, attending suspected or confirmed COVID-19 cases?’

Study design

An exploratory-descriptive qualitative approach [ 8 ] was applied to understand the experience of paramedics during the COVID-19 pandemic. A constructivist paradigm was chosen to explore paramedics’ experiences because it assumes there are multiple subjective realities, insider knowledge can be valuable, there is a holistic emphasis on the experience being investigated, and rich data are obtained whilst addressing context and processes [ 8 , 9 ].

Participant selection and setting

Registered paramedics from metropolitan south-east Queensland, Australia were invited to participate (few COVID-19 cases were occurring elsewhere at the time). Advanced Care Paramedics (ACP) and Critical Care Paramedics (CCP) in patient-facing roles with at least one year of operational experience during the COVID-19 pandemic were included. Patient Transport officers, doctors or paramedics working in supervisory roles were excluded. Criterion sampling [ 10 ] was applied to find participants with diverse education levels, age, gender and experience.

Recruitment and data collection

The primary researcher’s management position created a potential power imbalance given the position they worked in at the time, and their previous experience in operational paramedic roles made it likely they would know participants. Consequently, they had no direct contact with participants. A research assistant (RA) was utilised to ensure participant confidentiality and to ensure they felt safe to express themselves freely. The RA had a health science doctoral qualification and invited expressions of interest via an email containing an information sheet sent by the ambulance research department. Thirty-four responses were received. After an initial screen against the inclusion criteria, the RA sent a de-identified list to the primary researcher who authorised eleven invitations to be sent out in June 2022 that maximised sample diversity. After eight interviews, no new codes were generated; one more participant was interviewed to confirm this. Four open-ended interview questions on participants’ experiences of responding to patients during the COVID-19 pandemic, and the barriers and enablers to responding to these patients were asked. The interview was piloted with a paramedic who was not part of the study; no changes to the questions were required. The RA conducted, audio-recorded and transcribed interviews (approximately 30-min in duration) in July, 2022.

Data analysis

The research team included the primary researcher, and three doctoral qualified academics, one of whom was also a Registered Paramedic. Trustworthiness and rigour during data collection and analysis was addressed using the Lincoln-Guba framework, which underpins credibility, dependability, confirmability, and transferability [ 11 ]. During the interview and analysis phase, this included utilising a RA, member checking at the end of each interview, and researcher reflection on their own biases and preconceived thoughts after each transcript was reviewed. Researcher discussion supported rigour by identifying preconceptions the primary researcher may have that could influence data analysis [ 12 ]. Further member checking of transcripts was not deemed necessary due to the clarity of the participants’ comments.

Thematic analysis was conducted using the six-phase process outlined by Braun and Clarke [ 13 ]. The inductive method was used as the analysis was driven by the data, each participant’s language, and concepts [ 14 ], and aligns with the exploratory-descriptive qualitative approach, which focused on investigating the essence of the paramedics’ experiences during COVID-19 and remaining open to emerging themes. The transcripts were analysed by UH and all researchers discussed the coding and agreed on the themes. This discussion was informed by a range of illustrative quotes that exemplified each code.

Ethics approval was obtained from Royal Brisbane and Women’s Hospital Human Research Ethics Committee (Ref. no:84446) and Griffith University Human Research Ethics Committee (Ref. no:2021/819). The ambulance service approved paramedic recruitment. Participants gave informed consent.

Nine Registered Paramedics, four female and five male, aged 27–52 years (median 42; IQR = 32, 43), with 3–24 years of experience (median 8; IQR = 5, 15.5) were interviewed. Eight were ACPs, one was a CCP, all had a Bachelor of Paramedicine and two had paramedicine-related Master’s degrees. The analysis generated 26 codes and five themes: communication, fear and risk, leadership, work-related protective factors, and change.

Communication

This theme included the codes: organisational communication, media, public health messages, and interagency communication (Table  1 ). Participants perceived communication - from the ambulance service, media or formal health channels – substantially impacted paramedics during the pandemic. Communication ranged from being helpful and building trust, to lacking clarity and becoming overwhelming, confusing, and frustrating.

Fear and risk

The fear and risk theme included the codes: paramedic safety prioritised, physical risk to paramedic, healthcare barriers, unnecessary risk, fear of unknown, and having contracted COVID-19 (Table  2 ). Most indicated fear and risk influenced their personal and professional lives, with a flow on effect to patient care. Whilst mostly seen as a barrier to responding to cases, fear and risk also led to more empathetic approaches to patient care, and adherence to effective infection prevention and control practices.

The leadership theme included the codes: organisational leadership and lack of trust in organisation and government through the pandemic (Table  3 ). Some commented on the challenge of leadership through a pandemic, and appreciated open information-sharing, while others mistrusted decision-making and indicated the need for a consistent, visible leader.

Work-related protective factors

Work-related protective factors covered emotional, physical, or financial support, including vaccines, leave entitlements, personal protective equipment (PPE), secure employment and comradery (Table  4 ). However, wearing PPE in hot, humid environments, and difficulty accessing entitlement information caused frustration and distress.

The theme of change included the codes: adapting to their role and expectations, effect on personal life, emotional/mental health, evolution of pandemic normalised responding to cases, workload, and public reaction (Table  5 ). Paramedics reported issues as barriers earlier in the pandemic, but adapted as the community became highly vaccinated, their exposure to COVID-19 cases increased and it became more endemic, normalising responding to cases. Paramedics were often the first point of contact to navigate patients through the healthcare system, e.g., when patients called the ambulance service because they did not know what to do.

Barriers to, and enablers of, Queensland metropolitan paramedics responding to suspected or confirmed COVID-19 cases were identified. Some barriers had previously been reported in studies of other healthcare workers, including communication issues, change in work practices, increased burnout, psychological distress, fear of infection to self and loved ones, lack of PPE and vaccines, and unpreparedness [ 15 , 16 , 17 , 18 ]. Barriers unique to the prehospital environment included ineffective communication due to the mobile nature of paramedicine, inconsistent policies/procedures between different facilities, dispatch of incorrect information, assisting people to navigate the changing healthcare system, and wearing PPE in hot, humid environments.

Communication difficulties related to the mobile nature of paramedicine

While there can be communication issues in everyday work at the best of times, effective communication during a global infectious disease outbreak is particularly challenging due to mass media coverage, public concern, and uncertainty related to the disease [ 19 ]. Email-based communication is not always received, and communication failure can occur due to one-time message delivery, and communication fatigue [ 20 ]. In addition, media coverage, and widespread mis/disinformation created communication challenges [ 21 ].

Overwhelming, changing information during an outbreak is not unusual [ 7 ]. What was unique to the paramedic experience was the impact of the mobile nature of prehospital care. Attending multiple healthcare facilities per shift meant paramedics were exposed to multiple interpretations of pandemic guidance and local practices. Inconsistencies and lack of communication regarding different procedures, caused frustration, delays, and unnecessary exposure to infectious patients. This experience was confirmed in recent studies [ 5 , 7 , 22 , 23 ].

One paramedic [ 22 ] attended a case where four paramedics on scene had four different oxygenation strategies, due to frequent guideline changes and the timing of accessing updates, highlighting the need for better communication strategies as an outbreak evolves.

Increased safety risks due to receiving incorrect information from the ambulance service dispatch

Another unique communication barrier related to case dispatch. Paramedics rely on receiving correct information prior to arriving on scene to assess and mitigate risk based on what is known about the case. Miscommunication arose from the dispatcher either misunderstanding information or receiving incorrect information from the person requiring assistance, causing an increase in stress to the paramedic. Whilst case dispatch errors can occur outside of pandemic situations, the pandemic itself added an extra layer of stress in relation to paramedic safety. More stringent organisational procedures and public education are required to prevent this.

Paramedics assisted patients to navigate the new healthcare rules

The pandemic disrupted the way healthcare was delivered and/or accessed by both health professionals and consumers [ 17 , 24 , 25 ]. Paramedics were affected by increased hospital waiting times, and the move to telehealth changed the types of cases they were called to [ 7 ]. Paramedics often had to navigate patients through the healthcare system to access the most appropriate help in addition to the many changes they were experiencing in their workplace and community. This indicates the need for further investigation into how paramedics can effectively assist patients when there are so many changes occurring during a pandemic, often with limited information.

Wearing PPE in hot, humid environments, caused discomfort and fatigue

Globally, healthcare workers felt the adverse effects of wearing PPE more frequently and for longer periods [ 26 ], however, the prehospital environment created additional challenges for paramedics working in hot, humid conditions. While there is limited literature specifically on paramedics and heat-related illness when wearing PPE, during the African Ebola outbreak, the Centers for Disease Control and Prevention [ 27 ] indicated wearing PPE impairs the body’s ability to reduce body heat through sweat production, PPE holds excess heat and moisture and increases the physical effort to perform duties and the wearer can’t drink, increasing the risk of heat-related illness [ 27 , 28 ]. Other common risk factors in prehospital environments include direct sun exposure, physical exertion, dehydration, and indoor heat sources at patients’ homes. Clinicians need to balance having an impermeable layer of PPE to protect against viral contamination, and the heat stress caused to the wearer [ 29 ]. While personal cooling garments are available, the effectiveness of these to decrease PPE-related heat stress has not been studied [ 28 ].

Healthcare workers are at increased risk of self-contamination when doffing PPE if they are experiencing PPE-related discomfort [ 30 ], have trouble completing procedures, and experience facial injuries and skin conditions, and decreased well-being and job satisfaction. These issues are particularly relevant for paramedics in hot, humid parts of Australia. Paramedic-specific research is required to better support paramedics working in these environments in full PPE.

After contracting COVID-19, participants’ perceptions of risk reduced and empathy towards COVID-19-positive patients increased

One enabler - a decreased perception of risk and associated anxiety, and increased empathy for COVID cases after contracting COVID oneself - has not been previously reported, possibly because paramedics are used to experiencing risk in their work [ 31 , 32 ].

This exploration of paramedics’ experiences of barriers to, and enablers of, responding to suspected or confirmed COVID-19 cases uncovered challenges unique to the prehospital field that can potentially impact service delivery. Paramedicine is often the ‘forgotten profession’ overshadowed by community and acute care, and emergency department issues [ 31 ]. While studies based on a hypothetical public health emergency and willingness to respond are helpful, there are limitations compared to exploring this phenomenon during an actual public health emergency [ 33 ].

Limitations

Paramedics in non-metropolitan areas were not recruited and may have provided new insights into responding to cases in a geographically diverse state that includes logistical and resourcing challenges common in rural/remote areas. Given the specific recruitment for this study, the findings may not be transferable to other prehospital settings. Culture and personal beliefs and how these may have affected paramedics’ experience of working during a pandemic were not explored.

Recommendations

Further research is required on methods to improve communication to paramedics, particularly cross-facility communication, and how to flag critical information changes so these changes are implemented as soon, and consistently, as possible. Strategies to mitigate the effects of PPE when worn for extended periods in hot, humid conditions should also be explored. In the meantime, supervisors should prioritise regular rehydration, breaks, and welfare checks. Research on barriers and enablers during a public health emergency from the perspective of managers, executive leadership and other ambulance service providers would provide a deeper understanding of the issues.

The value of this research is that it captures Queensland metropolitan paramedics’ experience while working through the most significant public health emergency of our generation. This study uncovered barriers and enablers to responding to COVID-19 cases and thus to ambulance service delivery unique to paramedicine stemming from the mobile nature of prehospital care. It is vital that we support healthcare workers to maintain their physical and mental health, and willingly provide essential services, and that the healthcare system is ready to provide a cohesive response to public health emergencies across all sectors. This study highlights the importance of further research into paramedics in their roles.

Data availability

The datasets generated and analysed during the current study are not publicly available to protect the confidentiality of participants but are available from the corresponding author on reasonable request.

Abbreviations

Advanced care paramedic

Critical care paramedic

Coronavirus disease 2019

Personal protective equipment

Research assistant

Piotrowski A, Makarowski R, Predoiu R, Predoiu A, Boe O. Resilience and subjectively experienced stress among paramedics prior to and during the COVID-19 pandemic. Front Psychol 2021;12.

Ambulance Victoria. Types of Paramedics. Victoria: Ambulance Victoria. www.ambulance.vic.gov.au/paramedics/typesof-paramed Accessed 15 October 2023.

Carter H, Thompson J. Defining the paramedic process. Aust J Prim Health. 2015;21(1):22–6.

Article   PubMed   Google Scholar  

Watt K, Tippett VC, Raven S, Jamrozik K, Koory M, Archer F, et al. Attitudes to living and working in pandemic conditions among emergency prehospital medical care personnel. Prehosp Disaster Med. 2010;25(1):13–9.

Howarth U, Zimmerman P-A, van de Mortel T, Barr N. Barriers to, and enablers of, paramedics responding to suspected or confirmed COVID-19 cases: an integrative review. Australa Emerg Care. 2022;26(1):66–74.

Article   Google Scholar  

Li C, Sotomayor-Castillo C, Nahidi S, Kuznetsov S, Considine J, Curtis K, et al. Emergency clinicians’ knowledge, preparedness and experience of managing COVID-19 during the 2020 global pandemic in Australian healthcare settings. Australas Emerg Care. 2021;24:186–96.

Article   PubMed   PubMed Central   Google Scholar  

Petrie K, Smallwood N, Pascoe A, Willis K. Mental health symptoms and workplace challenges among Australian paramedics during the COVID-19 pandemic. Int J Environ Res Public Health. 2022;19(2):1004.

Article   CAS   PubMed   PubMed Central   Google Scholar  

Hunter DJ, McCallum J, Howes D. Defining exploratory-descriptive qualitative (EDQ) research and considering its application to healthcare. J Nurs H Care 2019; 4(1).

Polit D, Beck C. Trustworthiness and rigor in qualitative research. In: Polit D, Beck C, editors. Nursing Research. Generating and assessing evidence for nursing practice. 11th ed. Philadelphia: Wolters Kluwer; 2020. pp. 1948–2967.

Google Scholar  

Moser A, Korstjens I. Practical guidance to qualitative research. Part 3. Sampling, data collection and analysis. Eur J Gen Pract. 2018;24(1):9–18.

Stahl NA, King JR. Expanding approaches for research: Understanding and using trustworthiness in qualitative research. J Dev Educ. 2020 Fall;44(1):26–29.

Sundler AJ, Lindberg E, Nilsson C, Palmer L. Qualitative thematic analysis based on descriptive phenomenology. Nurs Open. 2019;6(3):733–9.

Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.

Clarke V, Braun V. Thematic analysis. In: Michalos A, Editor, editors. Encyclopedia of quality of life and well-being research. Netherlands: Springer; 2014. pp. 6626–8.

Chapter   Google Scholar  

Murray EJ, Mason M, Sparke V, Zimmerman P-E. Factors influencing health care workers’ willingness to respond to duty during infectious disease outbreaks and bioterrorist events: an integrative review. Prehosp Disaster Med. 2021;36(3):321–37.

Pilbeam C, Tonkin-Crine S, Martindale A, Atkinson P, Mabelson H, Lant S, et al. How do healthcare workers ‘do’ guidelines? Exploring how policy decisions impacted UK healthcare workers during the first phase of the COVID-19 pandemic. Qual Health Res. 2022;32(5):729–43.

Smallwood N, Karimi L, Pascoe A, Bismark M, Putland M, Johnson D, et al. Coping strategies adopted by Australian frontline health workers to address psychological distress during the COVID-19 pandemic. Gen Hosp Psychiatry. 2021;72:124–30.

Stuijfzand S, DeForges C, Sandoz V, Sajin C-T, Jacque C, Elmers A, et al. Psychological impact of an epidemic/pandemic on the mental health of healthcare professionals: a rapid review. BMC Public Health. 2020;20(1):1–18.

Huang C, Chou T, Liu JS. The development of pandemic outbreak communication: a literature review from the response enactment perspective. Know Manag Res Pract. 2021;19(4):525–35.

Germaine P, Catanzano T, Patel A, Mohan A, Patel K, Pryluck D, et al. Communication strategies and our learners. Curr Probl Diagn Radiol. 2021;50(3):297–300.

Mukhtar S. Psychological health during the coronavirus disease 2019 pandemic outbreak. Int J Soc Psychiatry. 2020;66(5):512–6.

Boechler L, Cameron C, Smith C, Ford-Jones P, Southers P. Impactful approaches to leadership on the front lines of the COVID-19 pandemic: lived experiences of Canadian paramedics. Healthc Q. 2021;24(3):42–7.

Oliphant A, Faulds C, Nouvet E. At the front-line: Ontario paramedics’ experiences of occupational safety, risk and communication during the 2020 COVID-19 pandemic. Int J Emerg Serv. 2022;11(2):207–21.

Bernacki K, Keister A, Sapiro N, Joo J, Mattle L. Impact of COVID-19 on patient and healthcare professional attitudes, beliefs, and behaviours toward the healthcare system and on the dynamics of the healthcare pathway. BMC Health Serv Res. 2021;21:1309.

Mitton JA, de Hernandez BU, Pasupuleti N, Hurley K, John R, Cole A. Disruptive resilience: harnessing leadership to build a more equitable health care system after COVID-19. Popul Health Manag. 2021;24(6):646–7.

Unoki T, Sakuramoto H, Sato R, Ouchi A, Kuribara T, Furumaya T et al. (2021). Adverse effects of personal protective equipment among intensive care unit healthcare professionals during the COVID-19 pandemic: A scoping review. SAGE Open Nurs 2021;6:1–14.

Centers for Disease Control and Prevention. Limiting heat burden while wearing Personal Protective Equipment (PPE). Centers for Disease Control and Prevention 2014. https://www.cdc.gov/niosh/topics/ebola/pdfs/limiting-heat-burden-while-wearing-ppe-training-slides-healthcare-workers-site-coordinators.pdf Accessed 15 October 2023.

Tumram NK. Personal protective equipment and personal cooling garments to reduce heat-related stress and injuries. Med Leg J. 2020;88(1 suppl):43–36.

Coca A, Quinn T, Kim J-H, Wu T, Powell J, Roberge R, et al. Physiological evaluation of personal protective ensembles recommended for use in West Africa. Disaster Med Public Health Prep. 2017;11(5):580–6.

Davey SL, Lee BJ, Robbins T, Randeva H, Thake C. Heat stress and PPE during COVID-19: impact of healthcare workers’ performance, safety and well-being in NHS settings. J Hosp Infect. 2021;108:185–8.

Article   CAS   PubMed   Google Scholar  

Lawn S, Roberts L, Willis E, Couzner L, Mohammadi L, Gobi E. The effects of emergency medical service work on the psychological, physical, and social well-being of ambulance personnel: a systematic review of qualitative research. BMC Psychiatry. 2020;20(1):348.

Maguire BJ. Violence against ambulance personnel: a retrospective cohort study of national data from safe work Australia. Public Health Res Pract. 2018;28(1):e28011805.

Gee S, Skovdal M. The role of risk perception in willingness to respond to the 2014–2016 west African Ebola outbreak: a qualitative study of international health care workers. Glob Health Res Policy. 2017;2(1):1–10.

Download references

Acknowledgements

We thank the Queensland Ambulance Service) for facilitating paramedic recruitment, Dr. Megan Rattray for her research assistance, and participants for their insights.

Nil to declare.

Author information

Authors and affiliations.

Queensland Ambulance Service, GPO Box 1425, Brisbane, QLD, 4001, Australia

Ursula Howarth

School of Nursing & Midwifery, Griffith University, Parklands Drive, Southport, QLD, 4222, Australia

Peta-Anne Zimmerman & Thea F. van de Mortel

Collaborative for the Advancement for Infection Prevention and Control, Gold Coast, QLD, Australia

Peta-Anne Zimmerman

Gold Coast Hospital and Health Service, Southport, QLD, Australia

Menzies Health Institute, Southport, QLD, Australia

University of Sunshine Coast School of Health, Locked Bag 4, Maroochydore, DC, QLD, 4558, Australia

You can also search for this author in PubMed   Google Scholar

Contributions

U.H. conceptualised the study and collected the data. U.H., P.Z, T.M. and N.B. analysed the data. U.H. drafted the manuscript. All authors revised and approved the manuscript.

Corresponding author

Correspondence to Thea F. van de Mortel .

Ethics declarations

Ethics approval and consent to participate.

Ethics approval was obtained from Royal Brisbane and Women’s Hospital Human Research Ethics Committee (Ref. no:84446) and Griffith University Human Research Ethics Committee (Ref. no:2021/819). The ambulance service approved paramedic recruitment. Participants gave written informed consent.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.

Additional information

Publisher’s note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Electronic supplementary material

Below is the link to the electronic supplementary material.

Supplementary Material 1

Rights and permissions.

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ . The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/ ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Reprints and permissions

About this article

Cite this article.

Howarth, U., Zimmerman, PA., van de Mortel, T.F. et al. Paramedics’ experiences of barriers to, and enablers of, responding to suspected or confirmed COVID-19 cases: a qualitative study. BMC Health Serv Res 24 , 678 (2024). https://doi.org/10.1186/s12913-024-11120-x

Download citation

Received : 07 November 2023

Accepted : 19 May 2024

Published : 29 May 2024

DOI : https://doi.org/10.1186/s12913-024-11120-x

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

• Emergency medical technician
• Ambulance service

BMC Health Services Research

ISSN: 1472-6963

• General enquiries: [email protected]

This paper is in the following e-collection/theme issue:

Published on 29.5.2024 in Vol 26 (2024)

Long-Term Emotional Impact of the COVID-19 Pandemic and Barriers and Facilitators to Digital Mental Health Tools in Long-Term Care Workers: Qualitative Study

Authors of this article:

Original Paper

• Leticia González-Spinoglio 1 , MSc   ; 
• Anna Monistrol-Mula 1, 2 , MSc   ; 
• Cecilia Vindrola-Padros 3 , PhD   ; 
• Salvatore Aguilar-Ortiz 1 , PhD   ; 
• Bernat Carreras 4 , MSc   ; 
• Josep Maria Haro 1, 2, 5 , PhD   ; 
• Mireia Felez-Nobrega 1, 2 , PhD  

1 Research and Development Unit, Parc Sanitari Sant Joan de Déu, Institut Sant Joan de Déu, Barcelona, Spain

2 Centre for Biomedical Research on Mental Health, Madrid, Spain

3 Department of Targeted Intervention, University College London, London, United Kingdom

4 Department of Psychiatry and Psychology, Institute of Neuroscience, Hospital Clínic, Barcelona, Spain

5 Departament de Medicina, Universitat de Barcelona, Barcelona, Spain

Corresponding Author:

Josep Maria Haro, PhD

Research and Development Unit, Parc Sanitari Sant Joan de Déu

Institut Sant Joan de Déu

C/Dr Antoni Pujada 42

Sant Boi de Llobregat

Barcelona, 08830

Phone: 34 93 640 63 50

Email: [email protected]

Background: The overall pandemic created enormous pressure on long-term care workers (LTCWs), making them particularly vulnerable to mental disorders. Despite this, most of the available evidence on professional well-being during COVID-19 has exclusively focused on frontline health care workers.

Objective: This study aimed to identify the long-term psychological needs of LTCWs derived from the COVID-19 pandemic and to explore barriers and facilitators related to digital mental health tools. This is part of a project that seeks to develop a digital mental health intervention to reduce psychological distress in this population group.

Methods: We performed a qualitative study with a rapid research approach. Participants were LTCWs of the autonomous community of Catalonia. We conducted 30 semistructured interviews between April and September 2022. We used a qualitative content analysis method with an inductive-deductive approach.

Results: The period of the pandemic with the highest mental health burden was the COVID-19 outbreak, with almost all workers having experienced some form of emotional distress. Emotional distress persisted over time in more than half of the participants, with fatigue and nervousness being the main emotions expressed at the time of the interview. High workload, the feeling that pandemic times are not over, and poor working conditions that have remained since then have been the most frequently expressed determinants of such emotions. Potential barriers and facilitators to engagement with digital tools were also identified in terms of previous experience and beliefs of the target population, possibilities for the integration of a digital tool into daily life, preferences regarding the level of guidance, the possibility of social connectedness through the tool, and privacy and confidentiality. The identified factors may become especially relevant in the context of the pandemic remission phase.

Conclusions: More than 2 years after the pandemic outbreak, emotional distress is still relevant. The persistent burden of psychological distress points to a need for institutions to take action to improve working conditions and promote employees’ well-being. Considering factors that act as barriers and facilitators for the use of digital mental health tools, it is important to develop tailored tools that could offer valuable support to this population during and after a pandemic.

Introduction

Long-term care facilities, such as nursing homes and other assisted living facilities, have been hit particularly hard by the COVID-19 pandemic. By February 2021, approximately 41% of the global COVID-19-associated mortality occurred in long-term care residents [ 1 ]. In Spain, the COVID-19 outbreak entailed especially tragic consequences, mainly caused by the precariousness of these care systems [ 2 ]. According to data from the Spanish Ministry of Health, 27,359 long-term residents died between April 6 and June 20, 2020, which represents approximately 70% of the total COVID-19 deaths. Long-term care workers (LTCWs) have been constantly exposed to anguish and death, have witnessed the social isolation and loneliness of residents due to health restrictions, and have experienced a drastic increase in their working demands [ 3 - 5 ]. Consequently, the mental health and well-being of this population group have been compromised, with clinically relevant levels of stress, anxiety, and depression increasing to nearly 60% from March 2020 to June 2020 [ 4 ].

As we approach the third year of the pandemic, health and care workers continue to respond to uncertainties, potential new waves, and the long-term effects of COVID-19. Importantly, recent evidence highlights increased concerns for burnout in this population [ 6 ], which can ultimately jeopardize the quality of health care as well as patient safety [ 7 ]. While mounting evidence has assessed the mental health experiences, views, and needs of care professionals during the early stages of the pandemic, there is scarce knowledge about the long-term emotional impact. This information is crucial to develop tailored interventions in response to their emotional demands.

Digital mental health tools (DMHTs) are a promising strategy to mitigate psychological consequences in the context of a long-lasting pandemic since they can be delivered remotely, avoiding the risk of transmission of the infection [ 8 ]. Yet, low levels of user engagement have been recognized as important barriers that may compromise the efficacy and scalability of interventions [ 9 ]. Increasing (prepandemic) evidence is beginning to unravel key factors that influence user engagement and the effectiveness of engagement strategies. For instance, positive prior experiences with mental health services and technology, digital literacy, the credibility of content, guidance within the intervention, increased social connectedness, a greater number of engagement features, reminders, and tailored feedback have been identified as potential facilitators for promoting engagement or effectiveness of digital interventions [ 10 - 13 ]. Nonetheless, these are general features reported in studies that included a wide range of different populations (eg, refugees, general population, people who are homeless, and people with a diagnosis of mental disorders), and it is well recognized that understanding the settings and population’s needs (eg, COVID-19 pandemic and long-term care facility characteristics) is a key factor for user engagement and intervention implementation success [ 14 ].

In this context, this study aimed to identify the long-term psychological needs of LTCWs as well as explore barriers and facilitators in relation to DMHTs. These findings will be used to inform and guide the development of a digital intervention to reduce psychological distress in this population group. The effectiveness of the psychological digital intervention will be tested through a randomized clinical trial (ClinicalTrials.gov NCT05526235).

Study Design, Sampling, and Participants

This qualitative study was conducted with a phenomenological orientation, in which we used a rapid research approach. In time-sensitive contexts, such as a pandemic, rapid appraisals allow us to collect and analyze data in a targeted and iterative way within limited time frames and, consequently, adapt and design expedient interventions for improving health care [ 15 ]. For reporting purposes, we adhered to the COREQ (Consolidated Criteria for Reporting Qualitative Research) checklist [ 16 ].

Semistructured interviews were conducted with workers from long-term care facilities (including nursing homes and other long-term care facilities), who were on duty during the pandemic in the autonomous community of Catalonia. For the recruitment of participants, we contacted several long-term care facilities and presented the project to each representative. Once the facility agreed to participate, the managerial staff shared the study information sheet among their employees (via their usual official means of communication). When needed, the researcher conducted informative talks (in person or via teleconference) with LTCWs in order to disseminate the study and resolve doubts, if any. A total of 6 long-term care facilities from the metropolitan area of Barcelona participated in the study.

Ethical Considerations

Ethics approval was provided by the Fundació Sant Joan de Déu Ethics Committee, Barcelona, Spain (PIC 214-21). Participants were fully informed about the objectives and procedures of the study prior to signing the informed consent. The data set was pseudoanonymized, and personal data were stored separately and securely on institution servers.

Data Collection

Interviews were conducted between April and September 2022. They were individual, by videoconference, and lasted between 25 and 40 minutes. The interview guide (provided in Multimedia Appendix 1 ) was reviewed by 2 experts in quality-of-life research to ensure its adequacy, and it was then tested with the first 2 interviews. No adaptations had to be made. The interview guide related to the digital mental health section was based on the framework developed by Borghouts et al [ 11 ]. Participants were given the option of conducting the interview in Spanish or Catalan, according to their preferences. Two researchers (AM-M and LG-S) conducted the interviews. Both are female PhD candidates. AM-M conducted the interviews in Catalan (8/30, 27% interviews), and LG-S conducted the interviews in Spanish (22/30, 73%). Both interviewers were previously trained in qualitative interview methods. Participants were informed of the interviewers’ educational and professional background, and no working or personal relationship existed between participants and interviewers. All interviews were audio recorded, and the main points were documented in real-time notes. At the conclusion of each interview, the emerging findings were synthesized using a RREAL (Rapid Research Evaluation and Appraisal Lab) Sheet (provided in Multimedia Appendix 2 ). The RREAL Sheet is a flexible working document, normally presented as a table, designed for the collection, synthesis, reporting, and analysis of data [ 17 ]. It enhances familiarization with the data and facilitates analysis while data collection is still ongoing [ 15 , 17 ]. First, a table organized by categories was designed using the interview script as a guide, and we piloted or amended this RREAL Sheet during initial data collection. Then, after each interview, we registered the key data obtained using real-time notes. In instances where pertinent details were absent, we referred to the audio recordings for further clarification. Importantly, the categories represented in the table were modified whenever considered necessary during data collection. Finally, the RREAL Sheet was used to guide an in-depth analysis [ 17 ]. The sample size was determined by thematic saturation [ 18 ].

Data Analysis

We used a qualitative content analysis method with an inductive-deductive approach. We performed a 1-page table that summarized the core components registered on the RREAL Sheet to identify key themes [ 17 ]. Once key themes and specific issues (subthemes) were recognized, we selected quotes from the interviews that could exemplify these themes. Investigator triangulation ensured that the themes reflected the full range and depth of the data.

Sample Characteristics

A total of 30 LTCWs participated in the study. The mean age was 44 (SD 11.4) years, most of our sample were women (n=26, 87%), and one-third (n=10, 33%) were from foreign nationalities. The vast majority of the participants were geriatric nursing assistants (n=17, 57%), followed by nurses (n=5, 17%). A more detailed description of the sociodemographic and occupational characteristics of the sample can be found in Table 1 .

a Director (n=1), occupational therapist (n=1), social worker (n=1), and cleaning staff (n=1).

Impact of COVID-19 on LTCWs’ Mental Health

Almost all participants identified the COVID-19 outbreak as the worst period for their mental health and reported having experienced emotional distress during this stage. The main emotions expressed were fear, helplessness, abandonment, loneliness, and sadness. Less frequently expressed emotions also included frustration, anger, uncertainty, and exhaustion. Five themes emerged as the main perceived determinants of these emotions:

• Unexpected and sudden nature of the crisis: Most participants expressed problems related to facing something new and completely unknown for which they were not prepared and its consequences. The reported main causes of distress were lack of information and knowledge, shortage of materials and human resources, problems with institutional organization, and the constant change of protocols and having to readjust to them.
• High exposure to emotional anguish and death: Half of the participants referred to high exposure to death and emotional anguish. They mainly mentioned the high mortality among residents and the helplessness of witnessing their isolation due to suspended family visits and reduced interactions resulting from health restrictions. Several participants also referred to the emotional anguish caused by the deaths of colleagues, family members, or friends as well as seeing the anguish in their colleagues on a daily basis.
• Fear of infection: Almost half of the participants mentioned the strong fear of infecting themselves, residents, and family members as well as the potential consequences of infection (eg, the severity of the disease and death).
• Moral distress: Many workers reported feelings of hopelessness, expressing that nothing they did for the residents in terms of care was enough. This was accompanied, in many cases, by a sense of loss of control of the situation during their caregiving duties.
• Lack of support: Many workers referred to a lack of recognition and support from authorities (both at the workplace and from the overall health authorities).

Textbox 1 provides an overview of these themes with example quotes for supporting data.

Unexpected and sudden nature of the crisis

• “We were not prepared; it came from one moment to the next.” [REPICAL (Reducing the psychosocial impact of the Covid-19 pandemic on workers of assisted living facilities)-007]
• “I also had to guide others in my charge, about things that I did not know either.” [REPICAL-004]
• “The protocols that we received were not clear...We were all in a drifting boat.” [REPICAL-008]
• “Overnight we were alone with co-workers. We were very lost; we did not have personal protective equipment and we did not know how to act. There were 4 of us and we managed as best as we could.” [REPICAL-026]

High exposure to emotional anguish and death

• “The worst thing I experienced was seeing so many residents die in such a short time, people who were fine and the next day they were gone.” [REPICAL-019]
• “We were not aware of the magnitude of this until residents began to die, they began to die one after the other, 4 or 5 per day (when before maybe one died every 2 months).” [REPICAL-026]
• “Seeing the loneliness in the residents affected me a lot, seeing that they were going to die alone, that they were not able to be with their family. It also affected me to see my co-workers, the most cheerful ones, defeated.” [REPICAL-021]
• “I felt so helpless seeing the isolated residents. We were asked not to have contact with them, but they needed someone to hold their hand.” [REPICAL-030]

Moral distress

• “We had to take measures that, while necessary, we knew were not good for the residents.” [REPICAL-003]
• “No matter what we did, people kept dying.” [REPICAL-004]
• “We saw that they were unwell and we could not help them...we wanted to address everything, but we could not.” [REPICAL-028]

Fear of infection

• “I even moved and lived in the residence for a while, so as not to infect the residents.” [REPICAL-019]
• “I had to isolate myself at home and I could not be with my child because I was afraid of infecting him. I also used to think: if something happens to me and my husband, who will take care of my child?” [REPICAL-023]

Lack of support

• “What I felt most was abandonment.” [REPICAL-002]
• “Feeling of helplessness of not being able to do anything and not having help from anyone.” [REPICAL-010]

In relation to their current emotional state, over half of the participants expressed some type of persistence of emotional distress over time. Among all participants, a minority reported maintaining intense distress, and a significant portion expressed only some improvement since the outbreak. The emotions most often mentioned were fatigue and nervousness, followed by anger and sadness. Three themes emerged as the main determinants of the persistent emotional distress:

• High workload: Long shifts due to staff shortages and coping with postcrisis backlog.
• Pandemic times are not over: Fatigue and residual discomfort from being under stress for so long as well as the feeling of not being able to completely move forward from COVID-19 due to the nature of their work.
• Still poor working conditions: Although the pandemic clearly highlighted the precariousness of these health care systems, some participants claimed that no measures have been taken to address this situation and that, as a result, working conditions remain poor. Relatedly, LTCWs felt that there is an overall failure in learning from the lessons of the COVID-19 pandemic.

Textbox 2 provides an overview of these themes with example quotes for supporting data.

On the other hand, among those participants who expressed a noticeable improvement over time in their emotional discomfort, hope and relief were the most commonly mentioned emotions. Improvement was associated with an increased sense of control over the situation, confidence in vaccines, decreased measures of isolation, and the feeling of regaining prepandemic working dynamics.

High workload

• “I am overwhelmed. In 2020, they increased my working hours. I was told it would only be during the state of emergency, but I am still not doing my usual schedule. In addition, people have left the workforce, and they have not hired more. I do not have as much time as I would like for other things.” [REPICAL-004]
• “Many projects were stopped because of the pandemic and now they have to be ready overnight. The workload is unreal.” [REPICAL-001]
• “Now we are facing our patients’ pathologies that were neglected during these two years. I am exhausted.” [REPICAL-005]

Pandemic times are not over

• “I am tired and burned out from dragging on for so long in tension, needing it to be over and it will not end.” [REPICAL-003]
• “Everyone has moved on, but I am still there: with the masks, the protective equipment, the heat.” [REPICAL-031]
• “During the crisis, we were alert at night in case a co-worker called us for help, and we always called each other; now I keep waking up even if they do not call me.” [REPICAL-026]

Still poor working conditions

• “With the pandemic, deficits that already existed in our field have come to light, and the thing is that nothing has changed, it’s just going back to the old ways. Nothing has been learned.” [REPICAL-002]

Digital Mental Health Tools

Previous experience and beliefs.

Almost all participants reported having no previous experience with DMHTs and emphasized their lack of confidence in their own digital skills. Nonetheless, the vast majority reported believing that such tools could be helpful in improving their mental health. The minority who reported not having confidence in digital tools mainly referred to their preference for personal, face-to-face contact.

Integration Into Daily Life

When participants were asked about what characteristics a DMHT should have to make it easy for them to integrate it into their daily lives, the majority of participants referred to the importance of accessibility: “easy to use,” “intuitive,” “didactic,” and “visual.” Some respondents also highlighted the importance of flexibility in using the tool in a time-convenient manner as well as being able to access from a mobile phone.

Level of Guidance and Social Connectedness

Regarding the level of guidance or support when using DMHTs, the majority of our sample reported preferring a guided intervention via a coach rather than a self-guided tool, expressing that the figure of a coach generates more confidence in the intervention and a greater sense of “closeness” despite the lack of in-person contact. Others mentioned the possibility of combining both modalities based on preference or demand. As for the profile of the coach, the most frequently mentioned professional role was a psychologist. However, rather than a professional role, most participants placed greater emphasis on the coach’s personal characteristics and skills, mainly highlighting empathy, active listening, receptivity, dynamism, and the ability to inspire confidence. As for the type of communication with the coach, the most preferred modality was videoconferencing, followed by telephone contact, and finally written messages. Some also mentioned the possibility of combining modalities, depending on the content and personal needs. Most of the participants preferred to accessing the content of the tool in stages or organized in modules rather than having it all available from the beginning. They indicated that this organization in modules would increase learnability by helping them navigate the tool in a more structured manner. Regarding content, some participants spontaneously emphasized the importance of having specific mental health content tailored to their needs rather than broad or general information. In addition, most noted that a reminder system, such as alarms, would be useful to aid engagement. Finally, regarding the possibility of being able to communicate with other users of the tool, a majority expressed that it would be a good idea, while a smaller group had doubts, and a few stated they would not use this option even if available.

Privacy and Confidentiality

Most participants reported that they would trust confidentiality protection mainly on the premise that when such an intervention is implemented within the context of a research study and with institutional backing, confidentiality should already be guaranteed. Among the few who expressed concerns, these were related to data privacy (sharing data with third parties), mentioning their concern about a possible link with social networks and the use of private data for advertising. On the other hand, almost all participants preferred nonanonymity with the figure of the coach to further “humanize” the intervention and increase confidence.

Principal Findings

Our results showed that the worst stage of the pandemic in terms of mental health was the outbreak, with almost all workers experiencing some form of emotional distress. The main emotions that participants expressed during this stage, as well as their determinants, are consistent with those reported by other national and international studies conducted on frontline health care workers during the first wave of the pandemic [ 3 - 5 , 19 - 22 ].

Importantly, our results showed that perceived emotional distress, main emotions, and their determinants changed over time. We found that almost half of the sample reported an improvement in their emotional discomfort over time, expressing hope and relief. This improvement was associated with a greater feeling of control over the situation, confidence in vaccines, decreased measures of isolation, and the feeling of regaining prepandemic working dynamics. Nonetheless, more than 2 years after the outbreak, emotional distress persisted for over half of the sample. Fatigue and nervousness were the main expressed emotions, which were determined by a high workload, the feeling that pandemic times are not over, and sustained poor working conditions. This result is consistent with other epidemiological studies, which showed that poor mental health outcomes among health care workers tend to persist over time [ 23 - 25 ] and that the main symptoms of poor mental health tend to change with the different COVID-19 stages as well [ 26 ].

Fatigue, nervousness, and emotional exhaustion, which may occur in response to chronic work stressors, are common signs of burnout [ 27 , 28 ]. Fatigue, which is not only linked to lower job satisfaction and increased rates of absenteeism [ 29 ], can also impair concentration and slow reaction times, elevating the risk of workplace accidents or fatigue-related incidents [ 30 ]. The assessment of the determinants of such emotional distress provides valuable input into potential intervention strategies to respond to such calls. Multifaceted interventions with a holistic approach and implemented in a timely manner are needed to protect the mental health and well-being of these workers during and after the pandemic. Similar to recommendations and claims made for the health care workforce, interventions for care workers should also be targeted at the organizational or institutional level via systematic support and at the individual level by implementing psychological interventions for those workers with emotional distress [ 29 , 31 , 32 ]. It is not enough that the institutions have been reactive to the pandemic with concrete measures to deal with a sudden crisis. They need to implement long-lasting workplace changes to improve working conditions and promote the long-term well-being of their staff. At the individual level, offering tailored digital psychological interventions using cognitive behavioral therapy is a promising option for workers experiencing emotional distress [ 29 ].

Since digital mental health interventions can represent a promising individual-level strategy to improve the mental health of LTCWs, we identified several barriers and facilitators for their successful engagement in the context of the COVID-19 remission phase.

Not only did almost all participants deny having any previous experience in the use of DMHTs, but almost a half of them also spontaneously referred to their lack of skills in the use of digital tools. This is a potential barrier that may be linked to the mean age of the sample (44, SD 11.4 years), since previous studies found that younger people have higher adherence to this type of intervention than older people [ 33 , 34 ]. Despite this lack of experience, the vast majority of participants reported believing that using DMHTs could be helpful in improving their mental health. This is an important facilitator since people’s expectations and preconceived beliefs about whether a tool will be effective positively influence experience and engagement [ 35 - 37 ]. In this regard, addressing the expectations and beliefs of the target population before developing a DMHT (or as an early step during the development process) could help identify and consequently manage early barriers [ 37 ].

Most participants highlighted the importance of accessibility when using a DMHT. Similar to previous studies [ 9 , 37 ], we found that achieving “user-friendly” tools is a key facilitator for engagement. In addition, participants also highlighted the importance of flexibility, which would enable them to use the tool according to their needs and changing working shifts .

Regarding the level of guidance or support, the majority of participants reported a preference for a guided intervention with a human coach rather than a self-guided tool, which is also in line with findings from previous studies [ 11 , 37 ]. Increased support may enhance and extend engagement in DMHTs. In the context of a pandemic, where social contact may be limited, this feature becomes even more relevant. Reminder systems are also important facilitators since they could prevent forgetfulness and encourage users to stay committed [ 37 ]. Furthermore, satisfaction with the type of content and the manner the materials are offered is critical to engagement. Interestingly, most of our participants express a preference for the tool’s content to be delivered in stages or modules, aiming to enhance learnability and facilitate structured navigation. Additionally, some participants underscore the significance of receiving personalized content that fits their needs or interests. Therefore, addressing user needs is key to preventing dropouts and ensuring sustained engagement [ 9 ]. In turn, most of our sample expressed that having the possibility to communicate with other users of the tool would be beneficial. Prior to the pandemic, social connectedness through DMHTs had proven to be not only a facilitator for engagement [ 38 ] but also a tool with therapeutic value per se [ 39 ]. In the current context, where social interactions have changed, this possibility could be even more relevant.

Finally, most participants in our study reported a high level of trust in confidentiality. This places significant responsibility on those developing mental health interventions through DMHTs. Research has indicated that the transmission of data to third parties by mental health smartphone apps is prevalent, thereby denying users an informed choice regarding whether or not to accept such sharing [ 40 ]. This issue may be a consequence of most DMHTs existing outside of health care regulation and also falling outside of health care privacy legislation [ 9 ]. A clear and transparent written privacy policy should always be available to inform users about how their data are going to be used.

At this juncture, it is crucial to contemplate the transferability of our findings to other work environments and populations. Although our research focused on a specific group in a particular context, the emerging themes and shared emotional experiences might resonate in similar situations. The fluctuation in perceptions over time provides a dynamic perspective that can be insightful for understanding long-term impacts in the context of future global pandemics. On the other hand, the impact of variables such as age or digital skills, perceived as potential barriers to the adoption of DMHTs, could be extrapolated to other populations, such as informal carers. The preference for guided interventions and the significance of accessibility and flexibility, among other variables, are also elements that might have broader applications in the design of DMHTs. It is imperative to acknowledge that each work environment and demographic group has its own unique characteristics, and the direct application of our results may necessitate adjustments. Nevertheless, by presenting these findings in a detailed and transparent manner, we aim to provide valuable insights that can guide future research and intervention strategies in diverse settings.

Limitations

This study acknowledges certain limitations that are crucial for contextualizing and evaluating the robustness of the findings. First, we did not account for participants’ preexisting mental health conditions (prior to COVID-19) when we assessed mental health needs. This could bear significant implications, as individuals with preexisting mental disorders are particularly vulnerable to the mental health threat of the pandemic. Second, the uneven gender distribution in our sample, with only 4 men, poses a limitation in terms of generalizing findings to this group. While our sample was not centralized in a single location, it is worth noting that all participating centers are located in the metropolitan area of Barcelona, which may limit the generalizability of our findings to the broader Catalonia region. Future studies should use more heterogeneous samples. Finally, inherent in qualitative research, there may be a potential for selection bias since workers were to some extent self-selected.

Conclusions

We identified that the worst stage of the pandemic in terms of LTCWs’ mental health was the COVID-19 outbreak, in which all workers reported having experienced some form of emotional distress. We also identified a persistence of emotional distress over time in more than a half of the participants, with fatigue and nervousness being the most frequently expressed emotions. This suggests that, although many workers significantly improved their psychological discomfort, mental health problems in this group are still relevant even more than 2 years after the pandemic outbreak. Future studies are needed to determine the factors that promote or hinder resilience among this underrepresented population group in order to shape implementation strategies to promote well-being. Finally, this study also identified new barriers and facilitators to engagement with DMHTs during the remission phase of the COVID-19 pandemic. These findings provide key information for the development of tailored digital mental health interventions among LTCWs.

Acknowledgments

This work was supported by the Instituto de Salud Carlos III (CD20/00036 to MF-N) and by la Fundació La Marato TV3 (202114 to JMH). The funding bodies had no role in study design, data collection and analysis, interpretation of data, or writing the manuscript.

Data Availability

The data sets generated during and analyzed during this study are available from the corresponding author on reasonable request.

Authors' Contributions

LG-S conceptualized the study, conducted methodology, performed formal analysis, and drafted the original manuscript. AM-M conducted methodology and performed formal analysis. CV-P contributed to conceptualization and methodology. SA-O and BC contributed to conceptualization. JMH conceptualized the study, contributed to methodology, and acquired funding. MF-N conceptualized the study, conducted methodology, managed project administration, and participated in writing, reviewing, and editing. LG-S, AM-M, CV-P, SA-O, BC, and JMH participated in reviewing and editing.

Conflicts of Interest

None declared.

Interview guide.

Rapid Research Evaluation and Appraisal Lab Sheet.

• Comas-Herrera A, Zalakaín J, Lemmon E, Henderson D, Litwin C, Hsu AT, et al. Mortality associated with COVID-19 in care homes: international evidence. Article in LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE. 2021. URL: https:/​/ltccovid.​org/​wp-content/​uploads/​2021/​02/​LTC_COVID_19_international_report_January-1-February-1-2.​pdf [accessed 2024-05-02]
• Rada AG. COVID-19: the precarious position of Spain's nursing homes. BMJ. 2020;369:m1554. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Blanco-Donoso LM, Moreno-Jiménez J, Amutio A, Gallego-Alberto L, Moreno-Jiménez B, Garrosa E. Stressors, job resources, fear of contagion, and secondary traumatic stress among nursing home workers in face of the COVID-19: the case of Spain. J Appl Gerontol. 2021;40(3):244-256. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Hering C, Gangnus A, Budnick A, Kohl R, Steinhagen-Thiessen E, Kuhlmey A, et al. Psychosocial burden and associated factors among nurses in care homes during the COVID-19 pandemic: findings from a retrospective survey in Germany. BMC Nurs. 2022;21(1):41. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Palacios-Ceña D, Fernández-Peña R, Ortega-López A, Fernández-Feito A, Bautista-Villaécija O, Rodrigo-Pedrosa O, et al. Long-term care facilities and nursing homes during the first wave of the COVID-19 pandemic: a scoping review of the perspectives of professionals, families and residents. Int J Environ Res Public Health. 2021;18(19):10099. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Shanafelt TD, West CP, Dyrbye LN, Trockel M, Tutty M, Wang H, et al. Changes in burnout and satisfaction with work-life integration in physicians during the first 2 years of the COVID-19 pandemic. Mayo Clin Proc. 2022;97(12):2248-2258. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Kaushik D. COVID-19 and health care workers burnout: a call for global action. EClinicalMedicine. 2021;35:100808. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Moreno C, Wykes T, Galderisi S, Nordentoft M, Crossley N, Jones N, et al. How mental health care should change as a consequence of the COVID-19 pandemic. Lancet Psychiatry. 2020;7(9):813-824. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Torous J, Nicholas J, Larsen ME, Firth J, Christensen H. Clinical review of user engagement with mental health smartphone apps: evidence, theory and improvements. Evid Based Ment Health. 2018;21(3):116-119. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Alkhaldi G, Hamilton FL, Lau R, Webster R, Michie S, Murray E. The effectiveness of prompts to promote engagement with digital interventions: a systematic review. J Med Internet Res. 2016;18(1):e6. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Borghouts J, Eikey E, Mark G, de Leon C, Schueller SM, Schneider M, et al. Barriers to and facilitators of user engagement with digital mental health interventions: systematic review. J Med Internet Res. 2021;23(3):e24387. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Wei Y, Zheng P, Deng H, Wang X, Li X, Fu H. Design features for improving mobile health intervention user engagement: systematic review and thematic analysis. J Med Internet Res. 2020;22(12):e21687. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Wu A, Scult MA, Barnes ED, Betancourt JA, Falk A, Gunning FM. Smartphone apps for depression and anxiety: a systematic review and meta-analysis of techniques to increase engagement. NPJ Digit Med. 2021;4(1):20. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Spanhel K, Balci S, Feldhahn F, Bengel J, Baumeister H, Sander LB. Cultural adaptation of internet- and mobile-based interventions for mental disorders: a systematic review. NPJ Digit Med. 2021;4(1):128. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Vindrola-Padros C, Chisnall G, Cooper S, Dowrick A, Djellouli N, Symmons SM, et al. Carrying out rapid qualitative research during a pandemic: emerging lessons from COVID-19. Qual Health Res. 2020;30(14):2192-2204. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349-357. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Vindrola-Padros C, Chisnall G, Polanco N, Juan NVS. Iterative cycles in qualitative research: introducing the RREAL sheet as an innovative process. Soc Sci Humanit Open. 2022. [ FREE Full text ] [ CrossRef ]
• Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77-101. [ CrossRef ]
• Fisher E, Cárdenas L, Kieffer E, Larson E. Reflections from the "forgotten front line": a qualitative study of factors affecting wellbeing among long-term care workers in New York City during the COVID-19 pandemic. Geriatr Nurs. 2021;42(6):1408-1414. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Mediavilla R, Monistrol-Mula A, McGreevy KR, Felez-Nobrega M, Delaire A, Nicaise P, et al. Mental health problems and needs of frontline healthcare workers during the COVID-19 pandemic in Spain: a qualitative analysis. Front Public Health. 2022;10:956403. [ FREE Full text ] [ CrossRef ] [ Medline ]
• White EM, Wetle TF, Reddy A, Baier RR. Front-line nursing home staff experiences during the COVID-19 pandemic. J Am Med Dir Assoc. 2021;22(1):199-203. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Zhang X, Sheng Q, Wang X, Cai C. The experience of frontline nurses four months after COVID-19 rescue task in China: a qualitative study. Arch Psychiatr Nurs. 2021;35(4):358-363. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Alonso J, Vilagut G, Alayo I, Ferrer M, Amigo F, Aragón-Peña A, et al. Mental impact of COVID-19 among Spanish healthcare workers. A large longitudinal survey. Epidemiol Psychiatr Sci. 2022;31:e28. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Mediavilla R, Fernández-Jiménez E, Martinez-Morata I, Jaramillo F, Andreo-Jover J, Morán-Sánchez I, et al. Sustained negative mental health outcomes among healthcare workers over the first year of the COVID-19 pandemic: a prospective cohort study. Int J Public Health. 2022;67:1604553. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Sasaki N, Asaoka H, Kuroda R, Tsuno K, Imamura K, Kawakami N. Sustained poor mental health among healthcare workers in COVID-19 pandemic: a longitudinal analysis of the four-wave panel survey over 8 months in Japan. J Occup Health. 2021;63(1):e12227. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Wang Y, Hu Z, Feng Y, Wilson A, Chen R. Changes in network centrality of psychopathology symptoms between the COVID-19 outbreak and after peak. Mol Psychiatry. 2020;25(12):3140-3149. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Denning M, Goh ET, Tan B, Kanneganti A, Almonte M, Scott A, et al. Determinants of burnout and other aspects of psychological well-being in healthcare workers during the COVID-19 pandemic: a multinational cross-sectional study. PLoS One. 2021;16(4):e0238666. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Peng P, Liang M, Wang Q, Lu L, Wu Q, Chen Q. Night shifts, insomnia, anxiety, and depression among Chinese nurses during the COVID-19 pandemic remission period: a network approach. Front Public Health. 2022;10:1040298. [ FREE Full text ] [ CrossRef ] [ Medline ]
• De Kock JH, Latham HA, Cowden RG. The mental health of healthcare workers during the COVID-19 pandemic: a narrative review. Curr Opin Psychiatry. 2022;35(5):311-316. [ CrossRef ] [ Medline ]
• Wong I, O'Connor MB. COVID-19 and workplace fatigue: lessons learned and mitigation strategies. Centers for Disease Control and Prevention. 2021. URL: https://blogs.cdc.gov/niosh-science-blog/2021/01/13/covid-19-fatigue/ [accessed 2024-05-02]
• Muller AE, Hafstad EV, Himmels JPW, Smedslund G, Flottorp S, Stensland S, et al. The mental health impact of the COVID-19 pandemic on healthcare workers, and interventions to help them: a rapid systematic review. Psychiatry Res. 2020;293:113441. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Murray E, Kaufman KR, Williams R. Let us do better: learning lessons for recovery of healthcare professionals during and after COVID-19. BJPsych Open. 2021;7(5):e151. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Abel EA, Shimada SL, Wang K, Ramsey C, Skanderson M, Erdos J, et al. Dual use of a patient portal and clinical video telehealth by veterans with mental health diagnoses: retrospective, cross-sectional analysis. J Med Internet Res. 2018;20(11):e11350. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Kannisto KA, Korhonen J, Adams CE, Koivunen MH, Vahlberg T, Välimäki MA. Factors associated with dropout during recruitment and follow-up periods of a mHealth-based randomized controlled trial for Mobile.Net to encourage treatment adherence for people with serious mental health problems. J Med Internet Res. 2017;19(2):e46. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Lattie EG, Adkins EC, Winquist N, Stiles-Shields C, Wafford QE, Graham AK. Digital mental health interventions for depression, anxiety, and enhancement of psychological well-being among college students: systematic review. J Med Internet Res. 2019;21(7):e12869. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Nitsch M, Dimopoulos CN, Flaschberger E, Saffran K, Kruger JF, Garlock L, et al. A guided online and mobile self-help program for individuals with eating disorders: an iterative engagement and usability study. J Med Internet Res. 2016;18(1):e7. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Patel S, Akhtar A, Malins S, Wright N, Rowley E, Young E, et al. The acceptability and usability of digital health interventions for adults with depression, anxiety, and somatoform disorders: qualitative systematic review and meta-synthesis. J Med Internet Res. 2020;22(7):e16228. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Baumel A, Muench F, Edan S, Kane JM. Objective user engagement with mental health apps: systematic search and panel-based usage analysis. J Med Internet Res. 2019;21(9):e14567. [ FREE Full text ] [ CrossRef ] [ Medline ]
• Townsend L, Zippay A, Caler K, Forenza B. Technology and opportunity: people with serious mental illness and social connection. J Soc Soc Work Res. 2016;7(2):371-393. [ FREE Full text ] [ CrossRef ]
• Huckvale K, Torous J, Larsen ME. Assessment of the data sharing and privacy practices of smartphone apps for depression and smoking cessation. JAMA Netw Open. 2019;2(4):e192542-e192542. [ FREE Full text ] [ CrossRef ] [ Medline ]

Abbreviations

Edited by T Leung; submitted 24.03.23; peer-reviewed by A AL-Asadi, P Petri-Romao, S Rennick-Egglestone; comments to author 19.01.24; revised version received 08.02.24; accepted 14.02.24; published 29.05.24.

©Leticia González-Spinoglio, Anna Monistrol-Mula, Cecilia Vindrola-Padros, Salvatore Aguilar-Ortiz, Bernat Carreras, Josep Maria Haro, Mireia Felez-Nobrega. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 29.05.2024.

This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as this copyright and license information must be included.

An official website of the United States government

The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

• Publications
• Account settings

Preview improvements coming to the PMC website in October 2024. Learn More or Try it out now .

• Advanced Search
• Journal List
• Can J Hosp Pharm
• v.67(6); Nov-Dec 2014

Qualitative Research: Getting Started

Introduction.

As scientifically trained clinicians, pharmacists may be more familiar and comfortable with the concept of quantitative rather than qualitative research. Quantitative research can be defined as “the means for testing objective theories by examining the relationship among variables which in turn can be measured so that numbered data can be analyzed using statistical procedures”. 1 Pharmacists may have used such methods to carry out audits or surveys within their own practice settings; if so, they may have had a sense of “something missing” from their data. What is missing from quantitative research methods is the voice of the participant. In a quantitative study, large amounts of data can be collected about the number of people who hold certain attitudes toward their health and health care, but what qualitative study tells us is why people have thoughts and feelings that might affect the way they respond to that care and how it is given (in this way, qualitative and quantitative data are frequently complementary). Possibly the most important point about qualitative research is that its practitioners do not seek to generalize their findings to a wider population. Rather, they attempt to find examples of behaviour, to clarify the thoughts and feelings of study participants, and to interpret participants’ experiences of the phenomena of interest, in order to find explanations for human behaviour in a given context.

WHAT IS QUALITATIVE RESEARCH?

Much of the work of clinicians (including pharmacists) takes place within a social, clinical, or interpersonal context where statistical procedures and numeric data may be insufficient to capture how patients and health care professionals feel about patients’ care. Qualitative research involves asking participants about their experiences of things that happen in their lives. It enables researchers to obtain insights into what it feels like to be another person and to understand the world as another experiences it.

Qualitative research was historically employed in fields such as sociology, history, and anthropology. 2 Miles and Huberman 2 said that qualitative data “are a source of well-grounded, rich descriptions and explanations of processes in identifiable local contexts. With qualitative data one can preserve chronological flow, see precisely which events lead to which consequences, and derive fruitful explanations.” Qualitative methods are concerned with how human behaviour can be explained, within the framework of the social structures in which that behaviour takes place. 3 So, in the context of health care, and hospital pharmacy in particular, researchers can, for example, explore how patients feel about their care, about their medicines, or indeed about “being a patient”.

THE IMPORTANCE OF METHODOLOGY

Smith 4 has described methodology as the “explanation of the approach, methods and procedures with some justification for their selection.” It is essential that researchers have robust theories that underpin the way they conduct their research—this is called “methodology”. It is also important for researchers to have a thorough understanding of various methodologies, to ensure alignment between their own positionality (i.e., bias or stance), research questions, and objectives. Clinicians may express reservations about the value or impact of qualitative research, given their perceptions that it is inherently subjective or biased, that it does not seek to be reproducible across different contexts, and that it does not produce generalizable findings. Other clinicians may express nervousness or hesitation about using qualitative methods, claiming that their previous “scientific” training and experience have not prepared them for the ambiguity and interpretative nature of qualitative data analysis. In both cases, these clinicians are depriving themselves of opportunities to understand complex or ambiguous situations, phenomena, or processes in a different way.

Qualitative researchers generally begin their work by recognizing that the position (or world view) of the researcher exerts an enormous influence on the entire research enterprise. Whether explicitly understood and acknowledged or not, this world view shapes the way in which research questions are raised and framed, methods selected, data collected and analyzed, and results reported. 5 A broad range of different methods and methodologies are available within the qualitative tradition, and no single review paper can adequately capture the depth and nuance of these diverse options. Here, given space constraints, we highlight certain options for illustrative purposes only, emphasizing that they are only a sample of what may be available to you as a prospective qualitative researcher. We encourage you to continue your own study of this area to identify methods and methodologies suitable to your questions and needs, beyond those highlighted here.

The following are some of the methodologies commonly used in qualitative research:

• Ethnography generally involves researchers directly observing participants in their natural environments over time. A key feature of ethnography is the fact that natural settings, unadapted for the researchers’ interests, are used. In ethnography, the natural setting or environment is as important as the participants, and such methods have the advantage of explicitly acknowledging that, in the real world, environmental constraints and context influence behaviours and outcomes. 6 An example of ethnographic research in pharmacy might involve observations to determine how pharmacists integrate into family health teams. Such a study would also include collection of documents about participants’ lives from the participants themselves and field notes from the researcher. 7
• Grounded theory, first described by Glaser and Strauss in 1967, 8 is a framework for qualitative research that suggests that theory must derive from data, unlike other forms of research, which suggest that data should be used to test theory. Grounded theory may be particularly valuable when little or nothing is known or understood about a problem, situation, or context, and any attempt to start with a hypothesis or theory would be conjecture at best. 9 An example of the use of grounded theory in hospital pharmacy might be to determine potential roles for pharmacists in a new or underserviced clinical area. As with other qualitative methodologies, grounded theory provides researchers with a process that can be followed to facilitate the conduct of such research. As an example, Thurston and others 10 used constructivist grounded theory to explore the availability of arthritis care among indigenous people of Canada and were able to identify a number of influences on health care for this population.
• Phenomenology attempts to understand problems, ideas, and situations from the perspective of common understanding and experience rather than differences. 10 Phenomenology is about understanding how human beings experience their world. It gives researchers a powerful tool with which to understand subjective experience. In other words, 2 people may have the same diagnosis, with the same treatment prescribed, but the ways in which they experience that diagnosis and treatment will be different, even though they may have some experiences in common. Phenomenology helps researchers to explore those experiences, thoughts, and feelings and helps to elicit the meaning underlying how people behave. As an example, Hancock and others 11 used a phenomenological approach to explore health care professionals’ views of the diagnosis and management of heart failure since publication of an earlier study in 2003. Their findings revealed that barriers to effective treatment for heart failure had not changed in 10 years and provided a new understanding of why this was the case.

ROLE OF THE RESEARCHER

For any researcher, the starting point for research must be articulation of his or her research world view. This core feature of qualitative work is increasingly seen in quantitative research too: the explicit acknowledgement of one’s position, biases, and assumptions, so that readers can better understand the particular researcher. Reflexivity describes the processes whereby the act of engaging in research actually affects the process being studied, calling into question the notion of “detached objectivity”. Here, the researcher’s own subjectivity is as critical to the research process and output as any other variable. Applications of reflexivity may include participant-observer research, where the researcher is actually one of the participants in the process or situation being researched and must then examine it from these divergent perspectives. 12 Some researchers believe that objectivity is a myth and that attempts at impartiality will fail because human beings who happen to be researchers cannot isolate their own backgrounds and interests from the conduct of a study. 5 Rather than aspire to an unachievable goal of “objectivity”, it is better to simply be honest and transparent about one’s own subjectivities, allowing readers to draw their own conclusions about the interpretations that are presented through the research itself. For new (and experienced) qualitative researchers, an important first step is to step back and articulate your own underlying biases and assumptions. The following questions can help to begin this reflection process:

• Why am I interested in this topic? To answer this question, try to identify what is driving your enthusiasm, energy, and interest in researching this subject.
• What do I really think the answer is? Asking this question helps to identify any biases you may have through honest reflection on what you expect to find. You can then “bracket” those assumptions to enable the participants’ voices to be heard.
• What am I getting out of this? In many cases, pressures to publish or “do” research make research nothing more than an employment requirement. How does this affect your interest in the question or its outcomes, or the depth to which you are willing to go to find information?
• What do others in my professional community think of this work—and of me? As a researcher, you will not be operating in a vacuum; you will be part of a complex social and interpersonal world. These external influences will shape your views and expectations of yourself and your work. Acknowledging this influence and its potential effects on personal behaviour will facilitate greater self-scrutiny throughout the research process.

FROM FRAMEWORKS TO METHODS

Qualitative research methodology is not a single method, but instead offers a variety of different choices to researchers, according to specific parameters of topic, research question, participants, and settings. The method is the way you carry out your research within the paradigm of quantitative or qualitative research.

Qualitative research is concerned with participants’ own experiences of a life event, and the aim is to interpret what participants have said in order to explain why they have said it. Thus, methods should be chosen that enable participants to express themselves openly and without constraint. The framework selected by the researcher to conduct the research may direct the project toward specific methods. From among the numerous methods used by qualitative researchers, we outline below the three most frequently encountered.

DATA COLLECTION

Patton 12 has described an interview as “open-ended questions and probes yielding in-depth responses about people’s experiences, perceptions, opinions, feelings, and knowledge. Data consists of verbatim quotations and sufficient content/context to be interpretable”. Researchers may use a structured or unstructured interview approach. Structured interviews rely upon a predetermined list of questions framed algorithmically to guide the interviewer. This approach resists improvisation and following up on hunches, but has the advantage of facilitating consistency between participants. In contrast, unstructured or semistructured interviews may begin with some defined questions, but the interviewer has considerable latitude to adapt questions to the specific direction of responses, in an effort to allow for more intuitive and natural conversations between researchers and participants. Generally, you should continue to interview additional participants until you have saturated your field of interest, i.e., until you are not hearing anything new. The number of participants is therefore dependent on the richness of the data, though Miles and Huberman 2 suggested that more than 15 cases can make analysis complicated and “unwieldy”.

Focus Groups

Patton 12 has described the focus group as a primary means of collecting qualitative data. In essence, focus groups are unstructured interviews with multiple participants, which allow participants and a facilitator to interact freely with one another and to build on ideas and conversation. This method allows for the collection of group-generated data, which can be a challenging experience.

Observations

Patton 12 described observation as a useful tool in both quantitative and qualitative research: “[it involves] descriptions of activities, behaviours, actions, conversations, interpersonal interactions, organization or community processes or any other aspect of observable human experience”. Observation is critical in both interviews and focus groups, as nonalignment between verbal and nonverbal data frequently can be the result of sarcasm, irony, or other conversational techniques that may be confusing or open to interpretation. Observation can also be used as a stand-alone tool for exploring participants’ experiences, whether or not the researcher is a participant in the process.

Selecting the most appropriate and practical method is an important decision and must be taken carefully. Those unfamiliar with qualitative research may assume that “anyone” can interview, observe, or facilitate a focus group; however, it is important to recognize that the quality of data collected through qualitative methods is a direct reflection of the skills and competencies of the researcher. 13 The hardest thing to do during an interview is to sit back and listen to participants. They should be doing most of the talking—it is their perception of their own life-world that the researcher is trying to understand. Sophisticated interpersonal skills are required, in particular the ability to accurately interpret and respond to the nuanced behaviour of participants in various settings. More information about the collection of qualitative data may be found in the “Further Reading” section of this paper.

It is essential that data gathered during interviews, focus groups, and observation sessions are stored in a retrievable format. The most accurate way to do this is by audio-recording (with the participants’ permission). Video-recording may be a useful tool for focus groups, because the body language of group members and how they interact can be missed with audio-recording alone. Recordings should be transcribed verbatim and checked for accuracy against the audio- or video-recording, and all personally identifiable information should be removed from the transcript. You are then ready to start your analysis.

DATA ANALYSIS

Regardless of the research method used, the researcher must try to analyze or make sense of the participants’ narratives. This analysis can be done by coding sections of text, by writing down your thoughts in the margins of transcripts, or by making separate notes about the data collection. Coding is the process by which raw data (e.g., transcripts from interviews and focus groups or field notes from observations) are gradually converted into usable data through the identification of themes, concepts, or ideas that have some connection with each other. It may be that certain words or phrases are used by different participants, and these can be drawn together to allow the researcher an opportunity to focus findings in a more meaningful manner. The researcher will then give the words, phrases, or pieces of text meaningful names that exemplify what the participants are saying. This process is referred to as “theming”. Generating themes in an orderly fashion out of the chaos of transcripts or field notes can be a daunting task, particularly since it may involve many pages of raw data. Fortunately, sophisticated software programs such as NVivo (QSR International Pty Ltd) now exist to support researchers in converting data into themes; familiarization with such software supports is of considerable benefit to researchers and is strongly recommended. Manual coding is possible with small and straightforward data sets, but the management of qualitative data is a complexity unto itself, one that is best addressed through technological and software support.

There is both an art and a science to coding, and the second checking of themes from data is well advised (where feasible) to enhance the face validity of the work and to demonstrate reliability. Further reliability-enhancing mechanisms include “member checking”, where participants are given an opportunity to actually learn about and respond to the researchers’ preliminary analysis and coding of data. Careful documentation of various iterations of “coding trees” is important. These structures allow readers to understand how and why raw data were converted into a theme and what rules the researcher is using to govern inclusion or exclusion of specific data within or from a theme. Coding trees may be produced iteratively: after each interview, the researcher may immediately code and categorize data into themes to facilitate subsequent interviews and allow for probing with subsequent participants as necessary. At the end of the theming process, you will be in a position to tell the participants’ stories illustrated by quotations from your transcripts. For more information on different ways to manage qualitative data, see the “Further Reading” section at the end of this paper.

ETHICAL ISSUES

In most circumstances, qualitative research involves human beings or the things that human beings produce (documents, notes, etc.). As a result, it is essential that such research be undertaken in a manner that places the safety, security, and needs of participants at the forefront. Although interviews, focus groups, and questionnaires may seem innocuous and “less dangerous” than taking blood samples, it is important to recognize that the way participants are represented in research can be significantly damaging. Try to put yourself in the shoes of the potential participants when designing your research and ask yourself these questions:

• Are the requests you are making of potential participants reasonable?
• Are you putting them at unnecessary risk or inconvenience?
• Have you identified and addressed the specific needs of particular groups?

Where possible, attempting anonymization of data is strongly recommended, bearing in mind that true anonymization may be difficult, as participants can sometimes be recognized from their stories. Balancing the responsibility to report findings accurately and honestly with the potential harm to the participants involved can be challenging. Advice on the ethical considerations of research is generally available from research ethics boards and should be actively sought in these challenging situations.

GETTING STARTED

Pharmacists may be hesitant to embark on research involving qualitative methods because of a perceived lack of skills or confidence. Overcoming this barrier is the most important first step, as pharmacists can benefit from inclusion of qualitative methods in their research repertoire. Partnering with others who are more experienced and who can provide mentorship can be a valuable strategy. Reading reports of research studies that have utilized qualitative methods can provide insights and ideas for personal use; such papers are routinely included in traditional databases accessed by pharmacists. Engaging in dialogue with members of a research ethics board who have qualitative expertise can also provide useful assistance, as well as saving time during the ethics review process itself. The references at the end of this paper may provide some additional support to allow you to begin incorporating qualitative methods into your research.

CONCLUSIONS

Qualitative research offers unique opportunities for understanding complex, nuanced situations where interpersonal ambiguity and multiple interpretations exist. Qualitative research may not provide definitive answers to such complex questions, but it can yield a better understanding and a springboard for further focused work. There are multiple frameworks, methods, and considerations involved in shaping effective qualitative research. In most cases, these begin with self-reflection and articulation of positionality by the researcher. For some, qualitative research may appear commonsensical and easy; for others, it may appear daunting, given its high reliance on direct participant– researcher interactions. For yet others, qualitative research may appear subjective, unscientific, and consequently unreliable. All these perspectives reflect a lack of understanding of how effective qualitative research actually occurs. When undertaken in a rigorous manner, qualitative research provides unique opportunities for expanding our understanding of the social and clinical world that we inhabit.

Further Reading

• Breakwell GM, Hammond S, Fife-Schaw C, editors. Research methods in psychology. Thousand Oaks (CA): Sage Publications Ltd; 1995. [ Google Scholar ]
• Strauss A, Corbin J. Basics of qualitative research. Thousand Oaks (CA): Sage Publications Ltd; 1998. [ Google Scholar ]
• Willig C. Introducing qualitative research in psychology. Buckingham (UK): Open University Press; 2001. [ Google Scholar ]
• Guest G, Namey EE, Mitchel ML. Collecting qualitative data: a field manual for applied research. Thousand Oaks (CA): Sage Publications Ltd; 2013. [ Google Scholar ]
• Ogden R. Bias. In: Given LM, editor. The Sage encyclopedia of qualitative research methods. Thousand Oaks (CA): Sage Publications Inc; 2008. pp. 61–2. [ Google Scholar ]

This article is the seventh in the CJHP Research Primer Series, an initiative of the CJHP Editorial Board and the CSHP Research Committee. The planned 2-year series is intended to appeal to relatively inexperienced researchers, with the goal of building research capacity among practising pharmacists. The articles, presenting simple but rigorous guidance to encourage and support novice researchers, are being solicited from authors with appropriate expertise.

Previous article in this series:

Bond CM. The research jigsaw: how to get started. Can J Hosp Pharm . 2014;67(1):28–30.

Tully MP. Research: articulating questions, generating hypotheses, and choosing study designs. Can J Hosp Pharm . 2014;67(1):31–4.

Loewen P. Ethical issues in pharmacy practice research: an introductory guide. Can J Hosp Pharm. 2014;67(2):133–7.

Tsuyuki RT. Designing pharmacy practice research trials. Can J Hosp Pharm . 2014;67(3):226–9.

Bresee LC. An introduction to developing surveys for pharmacy practice research. Can J Hosp Pharm . 2014;67(4):286–91.

Gamble JM. An introduction to the fundamentals of cohort and case–control studies. Can J Hosp Pharm . 2014;67(5):366–72.

Competing interests: None declared.

Understanding the Stigma Experience of Men Living with HIV in Sub-Saharan Africa: A Qualitative Meta-synthesis

• Substantive Review
• Published: 22 May 2024

Cite this article

• Sarah E. Janek   ORCID: orcid.org/0009-0002-1213-2791 1 ,
• Sandy Hatoum   ORCID: orcid.org/0009-0002-3618-9733 2 ,
• Leila Ledbetter   ORCID: orcid.org/0000-0002-5206-8002 3 &
• Michael V. Relf   ORCID: orcid.org/0000-0002-4951-8869 1 , 2  

43 Accesses

Explore all metrics

Men living with HIV (MLWH) in sub-Saharan Africa experience poor health outcomes and increased AIDS-related deaths due to stigma influencing testing and treatment uptake and adherence. PRISMA 2020 was used to report a meta-synthesis of the stigma experiences of MLWH in SSA. With the help of an expert librarian, a search of six databases was formulated and performed to examine the available qualitative and mixed method studies with qualitative results relevant to the research question. Studies focused on adult men living with HIV, with five studies specifically examining the HIV experience of men who have sex with men. Study themes were synthesized to describe MLWH’s perceived, internalized, anticipated, enacted, and intersectional stigma experiences. Most studies included masculinity as a key theme that affected both testing and treatment adherence upon diagnosis. Future research is needed to better understand subpopulations, such as men who have sex with men living with HIV, and what interventions may be beneficial to mitigate the disparities among MLWH in SSA.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price includes VAT (Russian Federation)

Instant access to the full article PDF.

Rent this article via DeepDyve

Institutional subscriptions

Similar content being viewed by others

“It is not an acceptable disease”: A qualitative study of HIV-related stigma and discrimination and impacts on health and wellbeing for people from ethnically diverse backgrounds in Australia

Overcoming hiv stigma a qualitative analysis of hiv cure research and stigma among men who have sex with men living with hiv, understanding hiv-related stigma among women in the southern united states: a literature review.

Kaiser Family Foundation. The global HIV/AIDS epidemic. KFF. 2022. https://www.kff.org/global-health-policy/fact-sheet/the-global-hivaids-epidemic/ . Accessed 13 Nov 2022.

UNAIDS. Fact sheet—latest global and regional statistics on the status of the AIDS epidemic. Joint United Nations Programme on HIV/AIDS (UNAIDS). 2022. https://www.unaids.org/sites/default/files/media_asset/UNAIDS_FactSheet_en.pdf . Accessed 23 Oct 2022.

West CA, Chang GC, Currie DW, Bray R, Kinchen S, Behel S, McCullough-Sanden R, Low A, Bissek A, Shang JD, Ndongmo CB, Dokubo EK, Balachandra S, Lobognon LR, Dube L, Nuwagaba-Biribonwoha H, Li M, Pasipamire M, Getaneh Y, Lulseged S, Eshetu F, Kingwara L, Zielinski-Gutierrez E, Tlhomola M, Ramphalla P, Kalua T, Auld AF, Williams DB, Remera E, Rwibasira GN, Mugisha V, Malamba SS, Mushi J, Jalloh MF, Mgomella GS, Kirungi WL, Biraro S, Awor AC, Barradas DT, Mugurungi O, Rogers JH, Bronson M, Bodika SM, Ajiboye A, Gaffga N, Moore C, Patel HK, Voetsch AC. Unawareness of HIV infection among men aged 15–59 years in 13 sub-Saharan African countries: findings from the population-based HIV impact assessments, 2015–2019. JAIDS. 2021;87:S97.

PubMed   Google Scholar  

UNAIDS. Executive summary—in danger: UNAIDS global AIDS update 2022 [Internet]. Joint United Nations Programme on HIV/AIDS (UNAIDS). 2022. https://www.unaids.org/sites/default/files/media_asset/2022-global-aids-update-summary_en.pdf . Accessed 23 Oct 2022.

UNAIDS. Addressing a blind spot in the response to HIV—reaching out to men and boys. Joint United Nations Programme on HIV/AIDS (UNAIDS). 2017. https://www.unaids.org/sites/default/files/media_asset/blind_spot_en.pdf . Accessed 23 Oct 2022.

Hatzenbuehler ML, Phelan JC, Link BG. Stigma as a fundamental cause of population health inequalities. Am J Public Health. 2013;103:813–21. https://doi.org/10.2105/AJPH.2012.301069 .

Article   PubMed   PubMed Central   Google Scholar  

Relf MV, Holzemer WL, Holt L, Nyblade L, Caiola CE. A review of the state of the science of HIV and stigma: context, conceptualization, measurement, interventions, gaps, and future priorities. J Assoc Nurses AIDS Care. 2021;32:392–407. https://doi.org/10.1097/JNC.0000000000000237 .

Herek GM. AIDS and stigma. Am Behav Sci. 1999;42:1106–16. https://doi.org/10.1177/00027649921954787 .

Article   Google Scholar  

Earnshaw VA, Smith LR, Chaudoir SR, Amico KR, Copenhaver MM. HIV stigma mechanisms and well-being among PLWH: a test of the HIV stigma framework. AIDS Behav. 2013;17:1785–95. https://doi.org/10.1007/s10461-013-0437-9 .

Derlega VJ, Winstead BA, Greene K, Serovich J, Elwood WN. Perceived HIV-related stigma and HIV disclosure to relationship partners after finding out about the seropositive diagnosis. J Health Psychol. 2002;7:415–32. https://doi.org/10.1177/1359105302007004330 .

Article   PubMed   Google Scholar  

Arinaitwe I, Amutuhaire H, Atwongyeire D, Tusingwire E, Kawungezi PC, Rukundo GZ, Ashaba S. Social support, food insecurity, and HIV stigma among men living with HIV in rural southwestern Uganda: a cross-sectional analysis. HIV AIDS (Auckl). 2021;13:657–66. https://doi.org/10.2147/HIV.S316174 .

Mburu G, Ram M, Siu G, Bitira D, Skovdal M, Holland P. Intersectionality of HIV stigma and masculinity in eastern Uganda: implications for involving men in HIV programmes. BMC Public Health. 2014;14:1061. https://doi.org/10.1186/1471-2458-14-1061 .

Sileo KM, Fielding-Miller R, Dworkin SL, Fleming PJ. A scoping review on the role of masculine norms in men’s engagement in the HIV care continuum in sub-Saharan Africa. AIDS Care. 2019;31:1435–46. https://doi.org/10.1080/09540121.2019.1595509 .

Abara WE, Garba I. HIV epidemic and human rights among men who have sex with men in sub-Saharan Africa: implications for HIV prevention, care, and surveillance. Glob Public Health. 2017;12:469–82. https://doi.org/10.1080/17441692.2015.1094107 .

Joshi K, Lessler J, Olawore O, Loevinsohn G, Bushey S, Tobian AAR, Grabowski MK. Declining HIV incidence in sub-Saharan Africa: a systematic review and meta-analysis of empiric data. J Int AIDS Soc. 2021. https://doi.org/10.1002/jia2.25818 .

Nyato D, Kuringe E, Drake M, Casalini C, Nnko S, Shao A, Komba A, Baral SD, Wambura M, Changalucha J. Participants’ accrual and delivery of HIV prevention interventions among men who have sex with men in sub-Saharan Africa: a systematic review. BMC Public Health. 2018. https://doi.org/10.1186/s12889-018-5303-2 .

Hamilton A, Thompson N, Choko AT, Hlongwa M, Jolly P, Korte JE, Conserve DF. HIV self-testing uptake and intervention strategies among men in sub-Saharan Africa: a systematic review. Front Public Health. 2021. https://doi.org/10.3389/fpubh.2021.594298 .

Hlongwa M, Hlongwana K, Makhunga S, Choko AT, Dzinamarira T, Conserve D, Tsai AC. Linkage to HIV care following HIV self-testing among men: systematic review of quantitative and qualitative studies from six countries in sub-Saharan Africa. AIDS Behav. 2022. https://doi.org/10.1007/s10461-022-03800-8 .

Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, Shamseer L, Tetzlaff JM, Akl EA, Brennan SE, Chou R, Glanville J, Grimshaw JM, Hróbjartsson A, Lalu MM, Li T, Loder EW, Mayo-Wilson E, McDonald S, McGuinness LA, Stewart LA, Thomas J, Tricco AC, Welch VA, Whiting P, Moher D. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ. 2021. https://doi.org/10.1136/bmj.n71 .

Turan B, Hatcher AM, Weiser SD, Johnson MO, Rice WS, Turan JM. Framing mechanisms linking HIV-related stigma, adherence to treatment, and health outcomes. Am J Public Health. 2017;107:863–9. https://doi.org/10.2105/AJPH.2017.303744 .

McGowan J, Sampson M, Salzwedel DM, Cogo E, Foerster V, Lefebvre C. PRESS peer review of electronic search strategies: 2015 guideline statement. J Clin Epidemiol. 2016;75:40–6. https://doi.org/10.1016/j.jclinepi.2016.01.021 .

UNAIDS. 90-90-90: an ambitious treatment target to help end the AIDS epidemic. Joint United Nations Programme on HIV/AIDS (UNAIDS). 2014. https://www.unaids.org/sites/default/files/media_asset/90-90-90_en.pdf . Accessed 10 June 2023.

UNAIDS. AIDS by the numbers: AIDS is not over, but it can be. Joint United Nations Programme on HIV/AIDS (UNAIDS). 2016. https://www.unaids.org/sites/default/files/media_asset/AIDS-by-the-numbers-2016_en.pdf . Accessed 10 June 2023.

Covidence systematic review software. Veritas Health Innovation. 2022. https://www.covidence.org/ . Accessed 8 Mar 2022.

Kmet LM, Lee RC, Cook LS. HTA initiative #13: standard quality assessment criteria for evaluating primary research papers from a variety of fields. Alberta Heritage Foundation for Medical Research. 2004. https://www.ihe.ca/download/standard_quality_assessment_criteria_for_evaluating_primary_research_papers_from_a_variety_of_fields.pdf . Accessed 24 Oct 2022.

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

Google Scholar  

Belay YA, Yitayal M, Atnafu A, Taye FA. Patient experiences and preferences for antiretroviral therapy service provision: implications for differentiated service delivery in Northwest Ethiopia. AIDS Res Ther. 2022;19:1–16. https://doi.org/10.1186/s12981-022-00452-5 .

Hlongwa M, Jama NA, Mehlomakulu V, Pass D, Basera W, Nicol E. Barriers and facilitating factors to HIV treatment among men in a high-HIV-burdened district in KwaZulu-Natal, South Africa: a qualitative study. Am J Mens Health. 2022. https://doi.org/10.1177/15579883221120987 .

Lofgren SM, Tsui S, Atuyambe L, Ankunda L, Komuhendo R, Wamala N, Sadiq A, Kirumira P, Srishyla D, Flynn A, Pastick KA, Meya DB, Nakasujja N, Porta C. Barriers to HIV care in Uganda and implications for universal test-and-treat: a qualitative study. AIDS Care. 2022;34:597–605. https://doi.org/10.1080/09540121.2021.1946000 .

Mandawa MB, Mahiti GR. Factors contributing to loss to follow-up from HIV care among men living with HIV/AIDS in Kibaha District, Tanzania. HIV AIDS (Auckl). 2022;14:503–16. https://doi.org/10.2147/hiv.S381204 .

Mange T, Henderson N, Lukelelo N. ‘After 25 years of democracy we are still stigmatised and discriminated against’ healthcare experiences of HIV-positive older black gay men in a township in South Africa. J Pract Teach Learn. 2022;9:87–100. https://doi.org/10.1921/jpts.v19i1-2.1674 .

Mathenjwa M, Khidir H, Milford C, Mosery N, Rambally Greener L, Pratt MC, O’Neil K, Harrison A, Bangsberg DR, Safren SA, Smit JA, Psaros C, Matthews LT. Acceptability of an intervention to promote viral suppression and serostatus disclosure for men living with HIV in South Africa: qualitative findings. AIDS Behav. 2022;26:1–12. https://doi.org/10.1007/s10461-021-03278-w .

Muwanguzi PA, Nelson LE, Ngabirano TD, Kiwanuka N, Osingada CP, Sewankambo NK. Linkage to care and treatment among men with reactive HIV self-tests after workplace-based testing in Uganda: a qualitative study. Front Public Health. 2022. https://doi.org/10.3389/fpubh.2022.650719 .

Nabikande S, Namutundu J, Nangendo J, Okello T, Agwang W, Tusabe J, Kabwama SN, Katahoire AR. Men’s late presentation for HIV care in Eastern Uganda: the role of masculinity norms. PLoS ONE. 2022. https://doi.org/10.1371/journal.pone.0277534 .

Ndione AG, Procureur F, Senne JN, Cornaglia F, Gueye K, Ndour CT, Lépine A. Sexuality-based stigma and access to care: intersecting perspectives between health care providers and men who have sex with men in HIV care centres in Senegal. Health Policy Plan. 2022;37:587–96. https://doi.org/10.1093/heapol/czac010 .

Rich C, Mavhu W, France NF, Munatsi V, Byrne E, Willis N, Nolan A. Exploring the beliefs, experiences and impacts of HIV-related self-stigma amongst adolescents and young adults living with HIV in Harare, Zimbabwe: a qualitative study. PLoS ONE. 2022. https://doi.org/10.1371/journal.pone.0268498 .

Hendrickson ZM, Naugle DA, Tibbels N, Dosso A, Van Lith LM, Mallalieu EC, Kamara D, Dailly-Ajavon P, Cisse A, Ahanda KS, Thaddeus S, Babalola S, Hoffman CJ. “You take medications, you live normally”: the role of antiretroviral therapy in mitigating men’s perceived threats of HIV in Côte d’Ivoire. AIDS Behav. 2019;23:2600–9. https://doi.org/10.1007/s10461-019-02614-5 .

Naugle DA, Tibbels NJ, Hendrickson ZM, Dosso A, Van Lith LM, Mallalieu EC, Kouadio AM, Kra W, Kamara D, Dailly-Ajavon P, Cissé A, Seifert-Ahanda K, Thaddeus S, Babalola S, Hoffman CJ. Bringing fear into focus: the intersections of HIV and masculine gender norms in Côte d’Ivoire. PLoS ONE. 2019. https://doi.org/10.1371/journal.pone.0223414 .

Tibbels NJ, Hendrickson ZM, Naugle DA, Dosso A, Van Lith LM, Mallalieu EC, Kouadio AM, Kra W, Kamara D, Dailly-Ajavon P, Cisse A, Seifert-Ahanda K, Thaddeus S, Babalola S, Hoffmann CJ. Men’s perceptions of HIV care engagement at the facility- and provider-levels: experiences in Cote d’Ivoire. PLoS ONE. 2019. https://doi.org/10.1371/journal.pone.0211385 .

Balogun A, Bissell P, Saddiq M. Negotiating access to the Nigerian healthcare system: the experiences of HIV-positive men who have sex with men. Cult Health Sex. 2020;22:233–46. https://doi.org/10.1080/13691058.2019.1582802 .

Mukumbang FC. Leaving no man behind: how differentiated service delivery models increase men’s engagement in HIV care. Int J Health Policy Manag. 2021;10:129–40. https://doi.org/10.34172/ijhpm.2020.32 .

Ogunbajo A, Kershaw T, Kushwaha S, Boakye F, Wallace-Atiapah N-D, Nelson LE. Barriers, motivators, and facilitators to engagement in HIV care among HIV-infected Ghanaian men who have sex with men (MSM). AIDS Behav. 2018;22:829–39. https://doi.org/10.1007/s10461-017-1806-6 .

Okal J, Lango D, Matheka J, Obare F, Ngunu-Gituathi C, Mugambi M, Avina S. “It is always better for a man to know his HIV status”—a qualitative study exploring the context, barriers and facilitators of HIV testing among men in Nairobi, Kenya. PLoS ONE. 2020. https://doi.org/10.1371/journal.pone.0231645 .

Okoror TA, Falade CO, Walker EM, Olorunlana A, Anaele A. Social context surrounding HIV diagnosis and construction of masculinity: a qualitative study of stigma experiences of heterosexual HIV positive men in southwest Nigeria. BMC Public Health. 2016;16:507. https://doi.org/10.1186/s12889-016-3165-z .

Sileo KM, Reed E, Kizito W, Wagman JA, Stockman JK, Wanyenze RK, Chemusto H, Musoke W, Mukasa B, Kiene SM. Masculinity and engagement in HIV care among male fisherfolk on HIV treatment in Uganda. Cult Health Sex. 2019;21:774–88. https://doi.org/10.1080/13691058.2018.1516299 .

Zissette S, Watt MH, Prose NS, Mntambo N, Moshabela M. “If you don’t take a stand for your life, who will help you?”: men’s engagement in HIV care in KwaZulu-Natal, South Africa. Psychol Men Masc. 2016;17:265–73. https://doi.org/10.1037/men0000025 .

Berner-Rodoreda A, Ngwira E, Alhassan Y, Chione B, Dambe R, Bärnighausen T, Phiri S, Taegtmeyer M, Neuhann F. “Deadly”, “fierce”, “shameful”: notions of antiretroviral therapy, stigma and masculinities intersecting men’s life-course in Blantyre, Malawi. BMC Public Health. 2021. https://doi.org/10.1186/s12889-021-12314-2 .

Mantell JE, Masvawure TB, Mapingure M, Apollo T, Gwanzura C, Block L, Bennett E, Preko P, Musuka G, Rabkin M. Engaging men in HIV programmes: a qualitative study of male engagement in community-based antiretroviral refill groups in Zimbabwe. J Int AIDS Soc. 2019. https://doi.org/10.1002/jia2.25403 .

Misra S, Mehta HT, Eschliman EL, Rampa S, Poku OB, Wang W-Q, Ho-Foster AR, Mosepele M, Becker TD, Entaile P, Arscott-Mills T, Opondo PR, Blank MB, Yang LH. Identifying “what matters most” to men in Botswana to promote resistance to HIV-related stigma. Qual Health Res. 2021;31:1680–96. https://doi.org/10.1177/10497323211001361 .

Mooney AC, Gottert A, Khoza N, Rebombo D, Hove J, Suárez AJ, Twine R, MacPhail C, Treves-Kagan S, Kahn K, Pettifor A, Lippman SA. Men’s perceptions of treatment as prevention in South Africa: implications for engagement in HIV care and treatment. AIDS Educ Prev. 2017;29:274–87. https://doi.org/10.1521/aeap.2017.29.3.274 .

Moyo I, Macherera M, Mavhandu-Mudzusi AH. The lived experiences of men who have sex with men when accessing HIV care services in Zimbabwe. Health SA. 2021. https://doi.org/10.4102/hsag.v26i0.1462 .

Meskele M, Khuzwayo N, Taylor M. Mapping the evidence of intimate partner violence among women living with HIV/AIDS in sub-Saharan Africa: a scoping review. BMJ Open. 2021. https://doi.org/10.1136/bmjopen-2020-041326 .

Tenkorang EY, Asamoah-Boaheng M, Owusu AY. Intimate partner violence (IPV) against HIV-positive women in sub-Saharan Africa: a mixed-method systematic review and meta-analysis. Trauma Violence Abuse. 2021;22:1104–28. https://doi.org/10.1177/1524838020906560 .

Sileo KM, Fielding-Miller R, Dworkin SL, Fleming PJ. What role do masculine norms play in men’s HIV testing in sub-Saharan Africa?: a scoping review. AIDS Behav. 2018;22:2468–79. https://doi.org/10.1007/s10461-018-2160-z .

Naanyu V, Ruff J, Goodrich S, Spira T, Bateganya M, Toroitich-Ruto C, Otieno-Nyunya B, Siika AM, Wools-Kaloustian K. Qualitative exploration of perceived benefits of care and barriers influencing HIV care in trans Nzoia, Kenya. BMC Health Serv Res. 2020. https://doi.org/10.1186/s12913-020-05236-z .

Makoae LN, Seboni NM, Molosiwa K, Moleko M, Human S, Sukati NA, Holzemer WL. The symptom experience of people living with HIV/AIDS in southern Africa. J Assoc Nurses AIDS Care. 2005;16:22–32. https://doi.org/10.1016/j.jana.2005.03.005 .

McGuinness LA, Higgins JPT. Risk-of-bias VISualization (robvis): an R package and Shiny web app for visualizing risk-of-bias assessments. Res Synth Methods. 2020. https://doi.org/10.1002/jrsm.1411 .

Download references

Acknowledgements

The manuscript was supported by the Fogarty International Center/National Institutes of Health through Award Number R21TW011247 (M. Relf, Contact MPI/L. Nyblade, MPI) and the Duke University Center for AIDS Research (CFAR), an NIH funded program (5P30AI064518). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Research reported in this publication was supported by the Fogarty International Center of the National Institutes for Health under award R21TW012007 and by the Duke Center for AIDS Research, a National Institutes of Health funded program under award number 5P30AI064518. The content is solely the responsibility of the authors and does not represent the official views of the National Institutes of Health.

Author information

Authors and affiliations.

School of Nursing, Duke University, 307 Trent Drive, Box 3322, Durham, NC, 27710, USA

Sarah E. Janek & Michael V. Relf

Duke Global Health Institute, Durham, NC, USA

Sandy Hatoum & Michael V. Relf

Medical Center Library, Duke University, Durham, NC, USA

Leila Ledbetter

You can also search for this author in PubMed   Google Scholar

Contributions

All authors on this paper meet the four criteria for authorship as identified by the International Committee of Medical Journal Editors; all authors have contributed to the drafting or been involved in revising it, reviewed the final version of this manuscript before submission, and agree to be accountable for all aspects of the work. Specifically, using the CRediT taxonomy, the specific contribution of each author is as follows: Conceptualization & Methodology: S. Janek, L. Ledbetter, M. Relf. Formal Analysis: S. Hatoum, S. Janek, M. Relf. Funding Acquisition: M. Relf. Investigation: S. Hatoum, S. Janek, L. Ledbetter, M. Relf. Methodology: S. Janek, L. Ledbetter, M. Relf. Project administration: M. Relf. Supervision: M. Relf. Verification: S. Hatoum, S. Janek, M. Relf. Writing—manuscript draft: S. Janek. Writing—review & editing: S. Hatoum, S. Janek, L. Ledbetter, M. Relf.

Corresponding authors

Correspondence to Sarah E. Janek or Michael V. Relf .

Ethics declarations

Conflict of interest.

The authors report no real or perceived vested interests related to this article that could be construed as a conflict of interest.

Additional information

Publisher's note.

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Registration The protocol that guided this meta-synthesis was prospectively registered with Prospero (registration ID: CRD42022315871).

Supplementary Information

Below is the link to the electronic supplementary material.

Supplementary file1 (DOCX 35 KB)

Rights and permissions.

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Janek, S.E., Hatoum, S., Ledbetter, L. et al. Understanding the Stigma Experience of Men Living with HIV in Sub-Saharan Africa: A Qualitative Meta-synthesis. AIDS Behav (2024). https://doi.org/10.1007/s10461-024-04329-8

Download citation

Accepted : 20 March 2024

Published : 22 May 2024

DOI : https://doi.org/10.1007/s10461-024-04329-8

Share this article

Anyone you share the following link with will be able to read this content:

Sorry, a shareable link is not currently available for this article.

Provided by the Springer Nature SharedIt content-sharing initiative

• Meta-synthesis
• People with HIV
• Sub-Saharan Africa
• Qualitative methodology
• Find a journal
• Publish with us
• Track your research