management of care incorporating qualitative research methods into practice

Qualitative Research – a practical guide for health and social care researchers and practitioners

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Darshini Ayton, Monash University

Tess Tsindos, Monash University

Danielle Berkovic, Monash University

Copyright Year: 2023

Last Update: 2024

ISBN 13: 9780645755404

Publisher: Monash University

Language: English

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Table of Contents

• Acknowledgement of Country
• About the authors
• Accessibility statement
• Introduction to research
• Research design
• Data collection
• Data analysis
• Writing qualitative research
• Peer review statement
• Licensing and attribution information
• Version history

Ancillary Material

About the book.

This guide is designed to support health and social care researchers and practitioners to integrate qualitative research into the evidence base of health and social care research. Qualitative research designs are diverse and each design has a different focus that will inform the approach undertaken and the results that are generated. The aim is to move beyond the “what” of qualitative research to the “how”, by (1) outlining key qualitative research designs for health and social care research – descriptive, phenomenology, action research, case study, ethnography, and grounded theory; (2) a decision tool of how to select the appropriate design based on a guiding prompting question, the research question and available resources, time and expertise; (3) an overview of mixed methods research and qualitative research in evaluation studies; (4) a practical guide to data collection and analysis; (5) providing examples of qualitative research to illustrate the scope and opportunities; and (6) tips on communicating qualitative research.

About the Contributors

Associate Professor Darshini Ayton is the Deputy Head of the Health and Social Care Unit at Monash University in Melbourne, Australia. She is a transdisciplinary implementation researcher with a focus on improving health and social care for older Australians and operates at the nexus of implementation science, health and social care policies, public health and consumer engagement. She has led qualitative research studies in hospitals, aged care, not-for-profit organisations and for government and utilises a range of data collection methods.  Associate Professor Ayton established and is the director of the highly successful Qualitative Research Methods for Public Health short course which has been running since 2014.

Dr Tess Tsindos  is a Research Fellow with the Health and Social Care Unit at Monash University in Melbourne, Australia. She is a public health researcher and lecturer with strong qualitative and mixed methods research experience conducting research studies in hospital and community health settings, not-for-profit organisations and for government. Prior to working in academia, Dr Tsindos worked in community care for government and not-for-profit organisations for more than 25 years. Dr Tsindos has a strong evaluation background having conducted numerous evaluations for a range of health and social care organisations. Based on this experience she coordinated the Bachelor of Health Science/Public Health Evaluation unit and the Master of Public Health Evaluation unit and developed the Evaluating Public Health Programs short course in 2022. Dr Tsindos is the Unit Coordinator of the Master of Public Health Qualitative Research Methods Unit which was established in 2022.

Dr Danielle Berkovic  is a Research Fellow in the School of Public Health and Preventive Medicine at Monash University in Melbourne, Australia. She is a public health and consumer-led researcher with strong qualitative and mixed-methods research experience focused on improving health services and clinical guidelines for people with arthritis and other musculoskeletal conditions. She has conducted qualitative research studies in hospitals and community health settings. Dr Berkovic currently provides qualitative input into Australia’s first Living Guideline for the pharmacological management of inflammatory arthritis. Dr Berkovic is passionate about incorporating qualitative research methods into traditionally clinical and quantitative spaces and enjoys teaching clinicians and up-and-coming researchers about the benefits of qualitative research.

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• 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

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

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

What is qualitative research?

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

Why conduct qualitative research?

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

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

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

How to conduct qualitative research?

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

Iterative research process

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

Data collection

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

Document study

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

Observations

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

Semi-structured interviews

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

Focus groups

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

Choosing the “right” method

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

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

Possible combination of data collection methods

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

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

Data analysis

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

From data collection to data analysis

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

How to report qualitative research?

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

How to combine qualitative with quantitative research?

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

Three common mixed methods designs

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

How to assess qualitative research?

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

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

Reflexivity

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

Sampling and saturation

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

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

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

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

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

Member checking

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

Stakeholder involvement

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

How not to assess qualitative research

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

Protocol adherence

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

Sample size

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

Randomisation

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

Interrater reliability, variability and other “objectivity checks”

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

Not being quantitative research

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

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

Availability of data and materials

Not applicable.

Abbreviations

Endovascular treatment

Randomised Controlled Trial

Standard Operating Procedure

Standards for Reporting Qualitative Research

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Using qualitative Health Research methods to improve patient and public involvement and engagement in research

• Danielle E. Rolfe 1 ,
• Vivian R. Ramsden 2 ,
• Davina Banner 3 &
• Ian D. Graham 1  

Research Involvement and Engagement volume  4 , Article number:  49 ( 2018 ) Cite this article

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Patient engagement (or patient and public involvement) in health research is becoming a requirement for many health research funders, yet many researchers have little or no experience in engaging patients as partners as opposed to research subjects. Additionally, many patients have no experience providing input on the research design or acting as a decision-making partner on a research team. Several potential risks exist when patient engagement is done poorly, despite best intentions. Some of these risks are that: (1) patients’ involvement is merely tokenism (patients are involved but their suggestions have little influence on how research is conducted); (2) engaged patients do not represent the diversity of people affected by the research; and, (3) research outcomes lack relevance to patients’ lives and experiences.

Qualitative health research (the collection and systematic analysis of non-quantitative data about peoples’ experiences of health or illness and the healthcare system) offers several approaches that can help to mitigate these risks. Several qualitative health research methods, when done well, can help research teams to: (1) accurately incorporate patients’ perspectives and experiences into the design and conduct of research; (2) engage diverse patient perspectives; and, (3) treat patients as equal and ongoing partners on the research team.

This commentary presents several established qualitative health research methods that are relevant to patient engagement in research. The hope is that this paper will inspire readers to seek more information about qualitative health research, and consider how its established methods may help improve the quality and ethical conduct of patient engagement for health research.

Research funders in several countries have posited a new vision for research that involves patients and the public as co-applicants for the funding, and as collaborative partners in decision-making at various stages and/or throughout the research process. Patient engagement (or patient and public involvement) in health research is presented as a more democratic approach that leads to research that is relevant to the lives of the people affected by its outcomes. What is missing from the recent proliferation of resources and publications detailing the practical aspects of patient engagement is a recognition of how existing research methods can inform patient engagement initiatives. Qualitative health research, for example, has established methods of collecting and analyzing non-quantitative data about individuals’ and communities’ lived experiences with health, illness and/or the healthcare system. Included in the paradigm of qualitative health research is participatory health research, which offers approaches to partnering with individuals and communities to design and conduct research that addresses their needs and priorities.

The purpose of this commentary is to explore how qualitative health research methods can inform and support meaningful engagement with patients as partners. Specifically, this paper addresses issues of: rigour (how can patient engagement in research be done well?); representation (are the right patients being engaged?); and, reflexivity (is engagement being done in ways that are meaningful, ethical and equitable?). Various qualitative research methods are presented to increase the rigour found within patient engagement. Approaches to engage more diverse patient perspectives are presented to improve representation beyond the common practice of engaging only one or two patients. Reflexivity, or the practice of identifying and articulating how research processes and outcomes are constructed by the respective personal and professional experiences of researchers and patients, is presented to support the development of authentic, sustainable, equitable and meaningful engagement of patients as partners in health research.

Conclusions

Researchers will need to engage patients as stakeholders in order to satisfy the overlapping mandate in health policy, care and research for engaging patients as partners in decision-making. This paper presents several suggestions to ground patient engagement approaches in established research designs and methods.

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Patient engagement (or patient and public involvement) in research involves partnering with ‘patients’ (a term more often used in Canada and the US, that is inclusive of individuals, caregivers, and/or members of the public) to facilitate research related to health or healthcare services. Rather than research subjects or participants, patients are engaged as partners in the research process. This partnership is intended to be meaningful and ongoing, from the outset of planning a research project, and/or at various stages throughout the research process. Engagement can include the involvement of patients in defining a research question, identifying appropriate outcomes and methods, collecting and interpreting data, and developing and delivering a knowledge translation strategy [ 1 ].

The concept of engaging non-researchers throughout the research process is not new to participatory health researchers, or integrated knowledge translation researchers, as the latter involves ongoing collaboration with clinicians, health planners and policy makers throughout the research process in order to generate new knowledge [ 2 , 3 ]. Patients, however, are less frequently included as partners on health research teams, or as knowledge users in integrated knowledge translation research teams compared to clinicians, healthcare managers and policy-makers, as these individuals are perceived as having “the authority to invoke change in the practice or policy setting.” (p.2) [ 2 ] Recent requirements for patient engagement by health research funders [ 4 , 5 , 6 ], ,and mandates by most healthcare planners and organizations to engage patients in healthcare improvement initiatives, suggest that it would be prudent for integrated knowledge translation (and indeed all) health researchers to begin engaging patients as knowledge users in many, if not all, of their research projects.

Training and tools for patient engagement are being developed and implemented in Canada via the Canadian Institutes for Health Research (CIHR) Strategy for Patient Oriented Research (SPOR) initiative, in the US via Patient Centered Outcomes Research Institute (PCORI), and very practical resources are already available from the UK’s more established INVOLVE Advisory Group [ 5 , 6 , 7 ]. What is seldom provided by these ‘get started’ guides, however, are rigorous methods and evidence-based approaches to engaging diverse patient perspectives, and ensuring that their experiences, values and advice are appropriately incorporated into the research process.

The purpose of this commentary is to stimulate readers’ further discussion and inquiry into qualitative health research methods as a means of fostering the more meaningfully engagement of patients as partners for research. Specifically, this paper will address issues of: rigour (how do we know that the interpretation of patients’ perspectives has been done well and is applicable to other patients?); representation (are multiple and diverse patient perspectives being sought?); and, reflexivity (is engagement being done ethically and equitably?). This commentary alone is insufficient to guide researchers and patient partners to use the methods presented as part of their patient engagement efforts. However, with increased understanding of these approaches and perhaps guidance from experienced qualitative health researchers, integrated knowledge translation and health researchers alike may be better prepared to engage patients in a meaningful way in research that has the potential to improve health and healthcare experiences and outcomes.

What can be learned from methods utilized in qualitative health research?

There is wide variation in researchers’ and healthcare providers’ openness to engaging patients [ 8 ]. Often, the patients that are engaged are a select group of individuals known to the research team, sometimes do not reflect the target population of the research, are involved at a consultative rather than a partnership level, and are more likely to be involved in the planning rather than the dissemination of research [ 9 , 10 , 11 ]. As a result, patient engagement can be seen as tokenistic and the antithesis of the intention of most patient engagement initiatives, which is to have patients’ diverse experiences and perspectives help to shape what and how research is done. The principles, values, and practices of qualitative health research (e.g., relativism, social equity, inductive reasoning) have rich epistemological traditions that align with the conceptual and practical spirit of patient engagement. It is beyond the scope of this commentary, however, to describe in detail the qualitative research paradigm, and readers are encouraged to gain greater knowledge of this topic via relevant courses and texts. Nevertheless, several qualitative research considerations and methods can be applied to the practice of patient engagement, and the following sections describe three of these: rigour, representation and reflexivity.

Rigour: Interpreting and incorporating patients’ experiences into the design and conduct of research

When patient engagement strategies go beyond the inclusion of a few patient partners on the research team, for example, by using focus groups, interviews, community forums, or other methods of seeking input from a broad range of patient perspectives, the diversity of patients’ experiences or perspectives may be a challenge to quickly draw conclusions from in order to make decisions about the study design. To make these decisions, members of the research team (which should include patient partners) may discuss what they heard about patients’ perspectives and suggestions, and then unsystematically incorporate these suggestions, or they may take a vote, try to achieve consensus, implement a Delphi technique [ 12 ], or use another approach designed specifically for patient engagement like the James Lind Alliance technique for priority setting [ 13 ]. Although the information gathered from patients is not data (and indeed would require ethical review to be used as such), a number of qualitative research practices designed to increase rigour can be employed to help ensure that the interpretation and incorporation of patients’ experiences and perspectives has been done systematically and could be reproduced [ 14 ]. These practices include member checking , dense description , and constant comparative analysis . To borrow key descriptors of rigour from qualitative research, these techniques improve “credibility” (i.e., accurate representations of patients’ experiences and preferences that are likely to be understood or recognized by other patients in similar situations – known in quantitative research as internal validity), and “transferability” (or the ability to apply what was found among a group of engaged patients to other patients in similar contexts – known in quantitative research as external validity) [ 15 ].

Member checking

Member checking in qualitative research involves “taking ideas back to the research participants for their confirmation” (p. 111) [ 16 ]. The objective of member checking is to ensure that a researcher’s interpretation of the data (whether a single interview with a participant, or after analyzing several interviews with participants) accurately reflects the participants’ intended meaning (in the case of a member check with a single participant about their interview), or their lived experience (in the case of sharing an overall finding about several individuals with one or more participants) [ 16 ]. For research involving patient engagement, member checking can be utilized to follow-up with patients who may have been engaged at one or only a few time points, or on an on-going basis with patient partners. A summary of what was understood and what decisions were made based on patients’ recommendations could be used to initiate this discussion and followed up with questions such as, “have I understood correctly what you intended to communicate to me?” or “do you see yourself or your experience(s) reflected in these findings or suggestions for the design of the study?”

Dense description

As with quantitative research, detailed information about qualitative research methods and study participants is needed to enable other researchers to understand the context and focus of the research and to establish how these findings relate more broadly. This helps researchers to not only potentially repeat the study, but to extend its findings to similar participants in similar contexts. Dense description provides details of the social, demographic and health profile of participants (e.g., gender, education, health conditions, etc.), as well as the setting and context of their experiences (i.e., where they live, what access to healthcare they have). In this way, dense description improves the transferability of study findings to similar individuals in similar situations [ 15 ]. To date, most studies involving patient engagement provide limited details about their engagement processes and who was engaged [ 17 ]. This omission may be done intentionally (e.g., to protect the privacy of engaged patients, particularly those with stigmatizing health conditions), or as a practical constraint such as publication word limits. Nonetheless, reporting of patient engagement using some aspects of dense description of participants (as appropriate), the ways that they were engaged, and recommendations that emanated from engaged patients can also contribute to greater transferability and understanding of how patient engagement influenced the design of a research study.

Constant comparative analysis

Constant comparative analysis is a method commonly used in grounded theory qualitative research [ 18 ]. Put simply, the understanding of a phenomenon or experience that a researcher acquires through engaging with participants is constantly redeveloped and refined based on subsequent participant interactions. This process of adapting to new information in order to make it more relevant is similar to processes used in rapid cycle evaluation during implementation research [ 19 ]. This method can be usefully adapted and applied to research involving ongoing collaboration and partnership with several engaged patient partners, and/or engagement strategies that seek the perspectives of many patients at various points in the research process. For example, if, in addition to having ongoing patient partners, a larger group of patients provides input and advice (e.g., a steering or advisory committee) at different stages in the research process, their input may result in multiple course corrections during the design and conduct of the research processes to incorporate their suggestions. These suggestions may result in refinement of earlier decisions made about study design or conduct, and as such, the research process becomes more iterative rather than linear. In this way, engaged patients and patient partners are able to provide their input and experience to improve each step of the research process from formulating an appropriate research question or objective, determining best approaches to conducting the research and sharing it with those most affected by the outcomes.

Representation: Gathering diverse perspectives to design relevant and appropriate research studies

The intention of engaging patients is to have their lived experience of health care or a health condition contribute to the optimization of a research project design [ 20 ]. Development of a meaningful and sustainable relationship with patient partners requires considerable time, a demonstrated commitment to partnership by both the patient partners and the researcher(s), resources to facilitate patient partners’ engagement, and often, an individual designated to support the development of this relationship [ 17 , 21 ]. This may lead some research teams to sustain this relationship with only one or two patients who are often previously known to the research team [ 17 ]. The limitation of this approach is that the experiences of these one or two individuals may not adequately reflect the diverse perspectives of patients that may be affected by the research or its outcomes. The notion of gaining ‘ the patient perspective’ from a single or only a few individuals has already been problematized [ 22 , 23 ]. To be sure, the engagement of a single patient is better than none at all, but the engagement of a broader and diverse population of patients should be considered to better inform the research design, and to help prevent further perpetuation of health disparities. Key issues to be considered include (1) how engagement can be made accessible to patients from diverse backgrounds, and (2) which engagement strategies (e.g., ranging from a community information forum to full partnership on the research team) are most appropriate to reach the target population [ 24 ].

Making engagement accessible

Expecting patient partner(s) to attend regular research team meetings held during working hours in a boardroom setting in a hospital, research institute or university limits the participation of many individuals. To support the participation and diversity of engaged patients, effort should be made to increase the accessibility and emotional safety of engagement initiatives [ 25 ]. A budget must be allocated for patient partners’ transportation, childcare or caregiving support, remuneration for time or time taken off work and, at the very least, covering expenses related to their engagement. Another consideration that is often made by qualitative health researchers is whether brief counselling support can be provided to patients should the sharing of their experiences result in emotional distress. There are some resources that can help with planning for costs [ 26 ], including an online cost calculator [ 27 ].

Engagement strategies

Patient partners can be coached to consider the needs and experiences of people unlike them, but there are other methods of engagement that can help to gain a more fulsome perspective of what is likely a diverse patient population that is the focus of the research study. In qualitative health research, this is known as purposeful or purposive sampling: finding people who can provide information-rich descriptions of the phenomenon under study [ 28 ]. Engagement may require different approaches (e.g., deliberative group processes, community forums, focus groups, and patient partners on the research team), at different times in the research process to reach different individuals or populations (e.g., marginalized patients, or patients or caregivers experiencing illnesses that inhibit their ability to maintain an ongoing relationship with the research team). Engagement strategies of different forms at different times may be required. For example, ongoing engagement may occur with patient partners who are members of the research team (e.g., co-applicants on a research grant), and intermittent engagement may be sought from other patients through other methods that may be more time-limited or accessible to a diverse population of patients (e.g., a one-time focus group, community forum, or ongoing online discussion) to address issues that may arise during various stages of the research or dissemination processes. The result of this approach is that patients are not only consulted or involved (one-time or low commitment methods), but are also members of the research team and have the ability to help make decisions about the research being undertaken.

Engagement can generate a wealth of information from very diverse perspectives. Each iteration of engagement may yield new information. Knowing when enough information has been gathered to make decisions with the research team (that includes patient partners) about how the research may be designed or conducted can be challenging. One approach from qualitative research that can be adapted for patient engagement initiatives is theoretical saturation [ 29 ], or “the point in analysis when…further data gathering and analysis add little new to the conceptualization, though variations can always be discovered.” (p. 263) [ 18 ]. That is, a one-time engagement strategy (e.g., a discussion with a single patient partner) may be insufficient to acquire the diverse perspectives of the individuals that will be affected by the research or its outcomes. Additional strategies (e.g., focus groups or interviews with several individuals) may be initiated until many patients identify similar issues or recommendations.

Engagement approaches should also consider: how patients are initially engaged (e.g., through known or new networks, posted notices, telephone or in-person recruitment) and whether involvement has been offered widely enough to garner multiple perspectives; how patients’ experiences are shared (e.g., community forums, formal meetings, individual or group discussions) and whether facilitation enables broad participation; and finally, how patients’ participation and experiences are incorporated into the research planning and design, with patients having equal decision-making capacity to other research team members. Several publications and tools are available that can help guide researchers who are new to processes of engaging patients in research [ 24 , 30 , 31 , 32 , 33 , 34 ], but unfortunately few address how to evaluate the effectiveness of engagement [ 35 ].

Reflexivity: Ensuring meaningful and authentic engagement

In qualitative research, reflexivity is an ongoing process of “the researcher’s scrutiny of his or her research experience, decisions, and interpretations in ways that bring the researcher into the process and allow the reader to assess how and to what extent the researcher’s interests, positions, and assumptions influenced inquiry. A reflexive stance informs how the researcher conducts his or her research, relates to the research participants, and represents them in written reports,” (p.188–189) [ 16 ]. The concept of reflexivity can be applied to research involving patient engagement by continually and explicitly considering how decisions about the research study were made. All members of the research team must consider (and perhaps discuss): (1) how patient partners are invited to participate in research planning and decision-making; (2) how their input is received relative to other team members (i.e., do their suggestions garner the same respect as researchers’ or providers’?); and, (3) whether engaged patients or patient partners feel sufficiently safe, able and respected to share their experiences, preferences and recommendations with the research team.

Ideally, reflexivity becomes a practice within the research team and may be operationalized through regular check-ins with patients and researchers about their comfort in sharing their views, and whether they feel that their views have been considered and taken onboard. Power dynamics should also be considered during patient engagement initiatives. For example, reflecting on how community forums, focus groups or interviews are to be facilitated, including a consideration of who is at the table/who is not, who speaks/who does not, whose suggestions are implemented/whose are not? Reflexivity can be practiced through informal discussions, or using methods that may allow more candid responses by engaged patients (e.g., anonymous online survey or feedback forms). At the very least, if these practices were not conducted throughout the research process, the research team (including patient partners) should endeavor to reflect upon team dynamics and consider how these may have contributed to the research design or outcomes. For example, were physicians and researchers seen as experts and patients felt less welcome or able to share their personal experiences? Were patients only engaged by telephone rather than in-person and did this influence their ability to easily engage in decision-making? Reflexive practices may be usefully supplemented by formal evaluation of the process of patient engagement from the perspective of patients and other research team members [ 36 , 37 ], and some tools are available to do this [ 35 ].

A note about language

One way to address the team dynamic between researchers, professional knowledge users (such as clinicians or health policy planners) and patients is to consider the language used to engage with patients in the planning of patient engagement strategies. That is, the term ‘patient engagement’ is a construction of an individual’s identity that exists only within the healthcare setting, and in the context of a patient-provider dynamic. This term does not consider how people make decisions about their health and healthcare within a broader context of their family, community, and culture [ 22 , 38 ]. This may be why research communities in some countries (e.g., the United Kingdom) use the term ‘patient and public involvement’. Additionally, research that involves communities defined by geography, shared experiences, cultural or ethnic identity, as is the case with participatory health research, may refer to ‘community engagement.’ Regardless of the term used, partnerships with patients, the public, or with communities need to be conceived instead as person-to-person interactions between researchers and individuals who are most affected by the research. Discussions with engaged patients should be conducted early on to determine how to best describe their role on the team or during engagement initiatives (e.g., as patient partners, community members, or people with lived experience).

Tokenism is the “difference between…the empty ritual of participation and having the real power needed to affect the outcome,” (p.2) [ 39 ]. Ongoing reflection on the power dynamic between researchers and engaged patients, a central tenet of critical qualitative health research [ 40 , 41 ], can increase the likelihood that engagement involves equitable processes and will result in meaningful engagement experiences by patients rather than tokenism [ 36 , 42 ]. Patient engagement initiatives should strive for “partnership” amongst all team members, and not just reflect a patient-clinician or researcher-subject dynamic [ 43 ]. To develop meaningful, authentic and sustainable relationships with engaged patients, methods used for participatory, action or community-based research (approaches that fall under the paradigm of qualitative inquiry) provide detailed experiential guidance [ 44 ]. For example, a realist review of community-based participatory research projects reported that gaining and maintaining trust with patient or community partners, although time-intensive, is foundational to equitable and sustainable partnerships that benefit communities and individuals [ 45 , 46 ]. Additionally, Chapter Nine of the Canadian Tri-Council Policy Statement on Research involving Humans, which has to date been applied to research involving First Nations, Inuit and, Métis Peoples in Canada [ 47 ], provides useful information and direction that can be applied to working with patient partners on research [ 48 ].

Authentic patient engagement should include their involvement at all stages of the research process [ 49 , 50 ], but this is often not the case [ 10 ]. .Since patient partners are not research subjects or participants, their engagement does not (usually) require ethics approval, and they can be engaged as partners as early as during the submission of grant applications [ 49 ]. This early engagement helps to incorporate patients’ perspectives into the proposed research before the project is wedded to particular objectives, outcomes and methods, and can also serve to allocate needed resources to support patient engagement (including remuneration for patient partners’ time). Training in research for patient partners can also support their meaningful engagement by increasing their ability to fully engage in decision-making with other members of the research team [ 51 , 52 ]. Patient partners may also thrive in co-leading the dissemination of findings to healthcare providers, researchers, patients or communities most affected by the research [ 53 ].

Patient engagement has gained increasing popularity, but many research organizations are still at the early stages of developing approaches and methods, many of which are based on experience rather than evidence. As health researchers and members of the public will increasingly need to partner for research to satisfy the overlapping mandate of patient engagement in health policy, healthcare and research, the qualitative research methods highlighted in this commentary provide some suggestions to foster rigorous, meaningful and sustained engagement initiatives while addressing broader issues of power and representation. By incorporating evidence-based methods of gathering and learning from multiple and diverse patient perspectives, we will hopefully conduct better patient engaged research, live out the democratic ideals of patient engagement, and ultimately contribute to research that is more relevant to the lives of patients; as well as, contribute to the improved delivery of healthcare services. In addition to the references provided in this paper, readers are encouraged to learn more about the meaningful engagement of patients in research from several key texts [ 54 , 55 , 56 ].

Abbreviations

Canadian Institutes for Health Research

Patient Centered Outcomes Research Institute

Strategy for Patient Oriented Research

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This paper was drafted in response to a call for concept papers related to integrated knowledge translation issued by the Integrated Knowledge Translation Research Network (CIHR FDN #143237).

This paper was commissioned by the Integrated Knowledge Translation Network (IKTRN). The IKTRN brings together knowledge users and researchers to advance the science and practice of integrated knowledge translation and train the next generation of integrated knowledge translation researchers. Honorariums were provided for completed papers. The IKTRN is funded by a Canadian Institutes of Health Research Foundation Grant (FDN #143247).

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Qualitative Research Methods in Health Services Research

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

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Integrating qualitative research methods into care improvement efforts within a learning health system: addressing antibiotic overuse

• Corrine E. Munoz-Plaza 1 ,
• Carla Parry 2 ,
• Erin E. Hahn 1 ,
• Tania Tang 1 ,
• Huong Q. Nguyen 1 ,
• Michael K. Gould 1 ,
• Michael H. Kanter 3 &
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Despite reports advocating for integration of research into healthcare delivery, scant literature exists describing how this can be accomplished. Examples highlighting application of qualitative research methods embedded into a healthcare system are particularly needed. This article describes the process and value of embedding qualitative research as the second phase of an explanatory, sequential, mixed methods study to improve antibiotic stewardship for acute sinusitis.

Purposive sampling of providers for in-depth interviews improved understanding of unwarranted antibiotic prescribing and elicited stakeholder recommendations for improvement. Qualitative data collection, transcription and constant comparative analyses occurred iteratively.

Emerging themes and sub-themes identified primary drivers of unwarranted antibiotic prescribing patterns and recommendations for improving practice. These findings informed the design of a health system intervention to improve antibiotic stewardship for acute sinusitis. Core components of the intervention are also described.

Qualitative research can be effectively applied in learning healthcare systems to elucidate quantitative results and inform improvement efforts.

Peer Review reports

In two recent reports, the National Academy of Medicine defined the Learning Healthcare System as an iterative, innovative process to improve healthcare delivery and outcomes [ 1 , 2 ]. Ideally, learning healthcare systems leverage advances in information technology to identify variation in services and patient outcomes, then establish a feedback loop between researchers, clinicians and leadership to rapidly evaluate and improve quality and efficiency [ 3 – 5 ]. Despite evidence that interventions adapted to local contexts and cultures can achieve success, there is limited practical literature describing this process [ 6 , 7 ].

We report our experience within Kaiser Permanente Southern California, an integrated healthcare delivery system with 14 medical centres and over 4 million members, as an example of how qualitative and quantitative methods may be combined to support the rapid cycle improvement process [ 8 ]. This study specifically sought to understand processes and drivers associated with overuse of antibiotics for treatment of acute sinusitis, as well as to garner physician stakeholders’ recommended strategies for improving prescribing behaviours at the point of care.

Overuse of non-recommended antibiotics to treat acute sinusitis is a global healthcare problem associated with unwarranted costs and burden to health systems worldwide. For example, in the United Kingdom, more than 90% of patients presenting with acute sinusitis are prescribed antibiotics [ 9 , 10 ]. Another European study of six different countries found that between 56% and 87% of acute sinusitis encounters resulted in antibiotics contrary to guidelines, thereby exposing patients to unwarranted harm and costs [ 11 ]. Reports in the United States are similar, with approximately 30 million individuals affected by acute sinusitis every year [ 12 – 14 ] and 85–98% receiving a prescription for antibiotics [ 15 ]. Noting limited research in the United States on the rates of inappropriate antibiotic prescribing in the outpatient setting, Fleming-Dutra et al. [ 16 ] found an estimated annual antibiotic prescription rate of 506 per 1000 population from 2010 to 2011. The authors determined that, of these, an estimated 353 prescriptions were likely appropriate and called for improvements in antibiotic stewardship. Targeting these overprescribing patterns for improvement, the American Academy of Family Practice, the American Academy of Asthma, Allergy and Immunology, the American Academy of Otolaryngology, and the American College of Emergency Physicians listed overuse of antibiotics and imaging for treatment of acute sinusitis as part of the Choosing Wisely © campaign of the American Board of Internal Medicine, which is dedicated to reducing use of low-value, unnecessary healthcare practices [ 17 ].

Patient history and physical examination is key when making a diagnosis of acute sinusitis, requiring physicians to rely on their experience and judgment of presenting symptoms, rather than radiological tests, which are generally not recommended. This can result in diagnostic uncertainty and lead to potentially harmful care [ 11 , 18 ]. Criteria for the diagnosis of acute sinusitis suggest that the determination should be made based on the primary symptoms of (1) purulent rhinitis and (2) facial pain [ 12 , 19 ]. Physical history obtained during the patient exam should also rely on the length of symptoms, and current guidelines for the management of acute sinusitis emphasize that uncomplicated acute sinusitis lasting less than 10 days (in the absence of severe symptoms, such as facial swelling, severe fever/worsening fever) should not result in computerized tomography imaging nor an antibiotic prescription [ 18 , 20 – 22 ]. Despite these recommendations over the last decade, there has not been much change in providers’ practice patterns and antibiotic prescribing rates [ 11 , 14 , 15 ].

In this manuscript, we present the qualitative results of a mixed methods study examining patterns and reasons for use of non-recommended antibiotics for treatment of acute sinusitis. Furthermore, we highlight how we used these qualitative methods to elucidate the results of a quantitative analysis using electronic medical record (EMR) data indicating widespread overuse of antibiotics for treatment. We discuss how quantitative and qualitative findings were used sequentially, and then together, to inform the design of a care improvement intervention within the context of a large healthcare system. Finally, the core components of the resulting intervention are presented. This process (using sequential mixed methodologies to inform intervention development) is an exemplar, offering a pragmatic approach for other organisations to use in understanding current best practices and potential barriers to improving healthcare within their own specific settings.

We used an explanatory, sequential, mixed methods design in this inquiry [ 23 ]. Quantitative data were collected and analysed in phase 1, followed by qualitative data collection and analysis in phase 2. Ultimately, this rich mix of quantitative and qualitative findings from our two-phase approach informed the development of a staged, multi-faceted healthcare intervention that improved care for patients with acute sinusitis.

In the first phase of research, we conducted a retrospective, observational study of all acute sinusitis encounters (ICD-9 code 461.x) for adult health plan members [ 24 ]. Findings indicated that (1) inappropriate antibiotic prescribing was common; (2) computed tomography imaging was infrequent; and (3) emergency department encounters were less likely to result in antibiotic prescriptions compared to primary care and urgent care patient visits. Phase 1 data spurred interest in understanding the drivers of unwarranted antibiotic prescribing and processes, as well as points for intervention within the context of our large health system. The phase 1 quantitative results shaped the planned qualitative activities in phase 2 of the study in two important ways. First, because inappropriate prescribing of antibiotics was common, but computed tomography imaging use was infrequent, the focus of phase 2 shifted toward the identification of specific drivers of antibiotic prescribing patterns, as opposed to use of imaging. Second, because emergency encounters were a small proportion of encounters and less likely to result in antibiotic prescriptions, primary care and urgent care physicians were targeted for qualitative interviews.

In phase 2, the primary objective of the qualitative research was to improve our understanding of physicians’ beliefs and practices related to overuse of antibiotics for treatment of acute sinusitis, and to elicit recommendations for encouraging guideline-consistent care within the context of our large, integrated healthcare delivery system. The semi-structured interview guide (Additional file 1 ) examined physician stakeholders’ perspectives on the barriers and facilitators to treating patients with acute sinusitis and elicited their suggestions about how to help clinicians avoid unwarranted antibiotic prescribing and increase provider recommendation of over-the-counter symptom relief in lieu of antibiotics (as consistent with medical evidence). The qualitative research utilized a purposive sampling approach to target and recruit primary care and urgent care physicians (n = 9) for individual, face-to-face interviews [ 25 , 26 ]. The Principal Investigator met with the Chiefs of Service for primary and urgent care within the health system to introduce the research and then recruited eligible providers through email. Volunteer participants met with a member of the study team trained in qualitative interviewing procedures. Each interview lasted approximately 30–45 minutes, and was audio-recorded and transcribed verbatim.

Analytical plan for qualitative interview data

Qualitative data collection, transcription and analyses occurred iteratively. Transcription and review of early transcripts by multiple team members provided an opportunity for quality control, leading to adjustments in the interview guide questions and transcription approach. Initial coding categories were generated from the preliminary research questions and key domains of inquiry to create a ‘start list’ of structural codes [ 27 ]. The primary coder reviewed transcripts using a constant comparative method of analysis [ 28 , 29 ]. During the first coding cycle, start list codes were applied to source text and then, during secondary and tertiary coding cycles of the transcripts, ‘open’ codes were applied, whereby new emergent coding categories considered salient to the goals of the research were captured. These newly emergent codes were unexpected, but grounded in the source text and, therefore, viewed as representative of important patterns and themes. Through the merging of inductive and deductive approaches, additional coding categories were generated throughout the analysis. To ensure clarity in code definitions and to improve reliability in the coding process, all codes were reviewed by study team members, revised through team consensus, and ultimately documented in a final codebook [ 27 ]. All data were managed using ATLAS.ti [ 30 ].

Characteristics of interview participants

The characteristics of the participating physicians are summarized in Table  1 . Mean age of the physicians was 45 years (SD, 8.9), and just over half were female (56%) and White (56%). Approximately three-quarters (78%) received their residency training in family medicine, with the remaining (22%) trained in internal medicine; mean years of practice experience was 15 (SD, 7.6).

Stakeholder interviews

Interviews were conducted with nine clinical stakeholders (six primary care physicians and three urgent care physicians). Data from the qualitative interviews were organised into domains, themes and sub-themes, presented in Table  2 . The two domains included primary drivers of unwarranted prescribing patterns and physicians’ recommendations to improve practice patterns. The themes encompassed clinical and non-clinical factors influencing treatment decisions and patterns of care, perceptions of current guidelines, as well as multi-level (e.g. patient-, provider- and system-level) suggestions for improvement. We begin the presentation of results with illustrations of the first domain: primary drivers of unwarranted antibiotic prescribing patterns.

Primary drivers of unwarranted antibiotic prescribing patterns

Physicians underscored their desire to help patients better understand their symptoms and reasons why alternative treatments are often recommended in lieu of antibiotics for uncomplicated sinusitis. Despite this intention, physicians noted multiple barriers to following best practices within the clinical setting. These included patient expectations and perception of the relationship between prescribing patterns and patient satisfaction ratings.

Patients’ expectations and satisfaction

Physicians reported that patients’ expectations, and the internal and external pressures to meet those expectations, are the most important non-clinical factors driving antibiotic prescribing patterns.

Patients are described as wanting tangible action (often in their minds a ‘prescription’) when they come in for an appointment and providers report struggling with the desire to meet these expectations. The following physician shared her perspective, stating:

“ …a lot of people here are working class people, they can’t be taking off [work] a lot. They pay a lot of money to come in here and they feel very pissed off when they come and spend sometimes even $50 …And then they are kind of coming out like, you know, do sinus washes and stuff…So it is a real conundrum and I don’t know what to do about it. ”

Physicians pointed out that routine evaluation of their services through the Member Appraisal of Physician/Provider Services surveys distributed to patients after medical encounters are, in part, responsible for driving unwarranted antibiotic prescribing patterns as well. Speaking on this issue, one provider commented:

“… there is one person here who is…a very big over prescriber of antibiotics, in addition to other things. Like over ordering of a lot of things. [That physician] probably has the best [Member Appraisal of Physician/Provider Services] scores in the region… Patients love [Dr. X] ! ”

Another physician echoed the sentiment of her peers, who admitted they sometimes provide antibiotics against current guidelines because they suspect patients will seek antibiotics from another provider (and often threaten to do so):

“ A lot of times I give antibiotics against my…better judgment…either the patient has an expectation and they are very angry and I know they are just going to…see somebody else until somebody gives it to them, which is really… common. ”

These reports reveal that pressure to meet prevailing social norms and patients’ expectations (both in the office encounter and as reflected in patient satisfaction assessments) may supersede the desire to provide guideline-concordant care. This concern may be further influenced by the financial incentive providers are given to receive favourable satisfaction scores in our system.

Patient and provider communication

Providers spoke at length about the challenges they face communicating with patients who expect antibiotics, but do not clinically need them. This perception exists despite specific courses offered to providers designed to educate and train in effective communication skills. Limited time during patient visits to effectively convey the current recommendations is a reported challenge, complicated by the degree to which there is a provider and patient connection – physicians find it difficult to influence newer patients toward alternative treatments when they do not already have a strong, established relationship with the patient:

“ Yeah, [patients coming in wanting antibiotics] …that is common. I think I would say it is much, much easier to [convince] …my own patients, because I know them and they trust me and [they] know I am not withholding anything from them, you know, there is a just a better level of trust there.

Access to guidelines

While physicians reported a basic understanding of the current acute sinusitis guidelines and sources available, staying abreast of the most current recommendations is perceived as challenging. In particular, physicians highlighted that integration of guidelines into practice can be slow and it can be difficult to keep up with the rapid pace at which new guidelines are published.

Physician recommendations to improve antibiotic prescribing patterns

The second domain in this study included physicians’ recommendations to improve antibiotic prescribing patterns, which included patient-, provider- and system-level strategies.

Patient education

There was consensus among providers that patients need additional education on the natural course of acute sinusitis and recommended treatment options. Providers stressed the importance of being able to effectively communicate that the length of symptoms is critical and that decongestants, antihistamines and nasal washes are typically the first line of defence. In particular, providers value patient education and resource materials from trusted sources external to our health system, because they can provide ‘back up’ during discussions with antibiotic-seeking patients when watchful waiting and/or alternative treatments are the preferred course. Several providers mentioned a previous campaign in their acute care settings that placed large posters in exam rooms to educate patients about the symptomology and recommended treatment for upper respiratory infections. The following provider emphasized that similar types of educational resources could also be helpful for educating patients during acute sinusitis encounters:

“ … [but] my chart helps…you should make that in every office, to have a huge chart [on the wall] like that even bigger than the ones they make [for upper respiratory infections] , because that has a lot of impact on patients, and maybe some other large print things about maybe the dangers of antibiotics…It is really, it has helped me a lot in arguments with patients. ”

Provider education

In addition to patient education, physicians would like to see greater emphasis placed on provider education, including in-service education opportunities and improved access to guidelines. While physicians do have protected independent education time (one half day per week), several providers expressed disappointment at the loss of protected group education time within the organisation because it offered opportunities for delivering more formal curricula:

“ But there used to always be a Tuesday afternoon [group] education [session] . And I found those really valuable. You know, you get your [Continuing Medical Education] credit and to hear things that are updated…so we don’t have that anymore, but I found that to be the best…we get a lot of things emailed, and… we have this primary care website that I am sure has all of this stuff on there… I can’t say it is really useful. ”

Clinical decision aids within the EMR system

Providers generally support the idea that integrating clinical decision aids into the EMR system can be an effective way to affect antibiotic prescribing, with the caveat that a systems-level intervention of this type should also include components that target other levels of influence (e.g. patient- and provider-level components). Physicians shared numerous stories and examples of how they have used the EMR system as a direct education tool with patients, such as the primary care provider who instructed, “ I am very into the patient being a part of the decision, so I’ll turn the screen and say…these are the criteria for antibiotics… ” Thus, best-practice alerts may serve as an intervention with physicians and reinforcement for providing guideline concordant care, but also as a teaching tool for patients (e.g. by spurring physician–patient discussion and or offering quick access to patient-friendly education materials by embedding them in the best practice advisory system).

Core components of a staged, multi-faceted healthcare intervention

Informed by the findings from phases 1 and 2 of the study, the following core intervention components were designed and implemented in order to reduce use of non-recommended antibiotics for treatment of acute sinusitis: (1) an educational presentation targeting acute care providers; (2) a system-level best practice alert within the EMR; and (3) a patient-friendly publication embedded within the best practice advisory.

Provider education – “Much Ado about Snot: Evaluating and Treating Acute Sinusitis”

This educational presentation targeted primary care and urgent care providers and was initially launched on two separate dates as an interactive web-based application. Prior to the launch of the web-based training for the broader Kaiser Permanente Southern California audience of providers, the content was presented to the clinical leaders in our health system. Based on our qualitative findings that physicians find it challenging to stay abreast of current recommendations and desire better integration of guidelines into practice, learning objectives of the course were to (1) understand current recommendations for diagnosing acute sinusitis; (2) identify how best to treat acute sinusitis; and (3) incorporate best evidence into current practice. After the original web-based presentation sessions were delivered, the training was uploaded onto the physicians’ online education portal, where it remains available to providers.

System-level EMR best practice alert (BPA)

The BPA is triggered within the EMR for patients over 18 years of age with an encounter diagnosis of acute sinusitis, when antibiotics are prescribed during the clinical encounter. The EMR-based electronic alert acts as a reminder to clinicians about guideline recommendations for treatment of acute sinusitis, and requests information about the requested antibiotic prescription. The system alert also guides providers to quickly select the recommended antibiotic when appropriate. The alert audience includes all providers with prescribing authority in the outpatient setting. Rollout of the BPA was staggered across medical centres over several months to facilitate comparisons between pre- and post-implementation groups.

BPA-embedded patient education materials

The BPA was designed based on information gathered during the qualitative interviews. Providers requested support from reputable, nationally recognized, third-party entities to help with patient discussions with those seeking unwarranted antibiotics. The research team identified the Choosing Wisely® publication entitled, Treating Sinusitis: Don’t Rush to Antibiotics , as an effective patient education resource made available during the clinical encounter in the BPA. This Choosing Wisely ® publication, which is a joint publication with Consumer Reports ® and the American Academy of Family Physicians, emphasizes current recommendations and outlines a number of over-the-counter and home remedy options as alternatives to taking antibiotics for a likely viral infection. This publication remains embedded within the BPA, such that providers can readily access the handout and provide it to patients during an acute sinusitis encounter.

Intervention implementation

The design of the intervention was based on our qualitative results, which directly informed our efforts to successfully reduce use of non-recommended services at the system-level (BPA embedded in the EMR), provider-level (physician education presentation), and patient-level (BPA-embedded patient education materials). Results from our evaluation of this intervention are forthcoming, and preliminary findings are encouraging.

Qualitative interviews with clinicians elicited valuable information and expanded our understanding of the practice context in ways that we could not have achieved exploring the structured EMR data alone. Retrospective, structured data collected during phase 1 of our research suggested an opportunity to develop targeted implementation strategies to improve antibiotic stewardship and to translate accepted antibiotic guidelines across care settings. Whereas the first phase of the research indicated a clear gap between current practice and best practices for acute sinusitis, the qualitative component of our mixed methods approach explored why the gap exists, and suggested how to bridge the gap by examining the barriers and/or facilitators to implementing these best practices in our specific care settings.

Interviews with primary and urgent care providers underscored the extent to which physicians’ concerns about patients’ expectations and satisfaction drive unwarranted antibiotic prescribing practices. Physicians emphasized the difficulty conveying the option and potential efficacy of evidence-based, medically indicated treatment alternatives (e.g. watch and wait, over-the-counter medications) to patients intent on receiving antibiotics, but for whom a prescription is not appropriate. Patient co-pays (typically ranging from $20 to $50 per visit) and the linking of patient satisfaction scores with provider incentives may further complicate communication, arguably redefining the patient–provider relationship as a customer–provider relationship. According to provider interviews, these factors systematically reinforce undesired behaviour, with physicians openly admitting that pressure from patients and incentive structures have caused them to prescribe antibiotics contrary to known guidelines.

Physicians articulated a need for easily-accessible guidelines, patient education resources, and enhancements to the EMR system as important tools to reinforce their conversations with patients. Recent literature in primary care settings suggests that provider concerns regarding the negative influence of patient satisfaction on unwarranted antibiotic prescribing may be real. In a cross-sectional analysis of national patient survey data and prescribing data within primary care practices in England, patients reported higher rates of dissatisfaction with their care if they were associated with a practice less likely to prescribe antibiotics [ 10 ]. Researchers suggest that acknowledging the extent to which trade-offs may exist between the promotion of physician–patient relationships and antibiotic prescribing is an important next step, and call for additional studies that can determine ways that patient satisfaction can be maintained during visits where providers refuse to prescribe antibiotics based on sound clinical evidence [ 10 , 31 ].

Limitations

The fundamental goals for conducting interviews was to help us to (1) explain the quantitative data by providing rich context to the patterns identified; (2) focus on the departments/physicians in our setting most likely to overprescribe unwarranted antibiotics; and (3) uncover any potential leverage points for intervention. The nine interviews were detailed, generating 157 pages of written transcript containing in-depth, deeply contextualized data from providers within our health system. Spending a significant portion of our interview time with physicians discussing both the clinical and non-clinical factors that impact their treatment decisions, we found a high degree of consensus among physicians as to the primary drivers of unwarranted antibiotic prescribing behaviours. After the first two to three initial interviews, repetition of thematic classifications was evident, allowing the team to group participants’ responses into key emerging thematic categories contextualized to our specific healthcare setting, including (1) the role of patient expectations/satisfaction; (2) the value of the patient–provider relationship to antibiotic prescribing, yet the barriers to achieving effective patient–provider communication within our setting; and (3) the need for improved access to updated guidelines. Providers’ suggestions for how to address the problem also converged quickly, emphasizing the key thematic groupings as (1) a desire for patient education materials from trusted external sources to serve as ‘back up’ with patients, (2) provider reinforcement through in-service education, and (3) capitalizing on the EMR as a tool for both provider reinforcement and patient education. These themes were consistent throughout the remaining interviews, with few divergent viewpoints emerging.

However, we acknowledge that the qualitative findings reported herein may not be generalizable to all healthcare delivery systems. Physician participants were recruited to the phase 2 portion of the study using purposive, convenience sampling and the qualitative sample of interviews was relatively small. Despite these limitations, acute care providers in our integrated health system, which serves over 4 million members, maintain patient panels that are socio-demographically diverse and largely representative of the general population of Southern California [ 32 ]. While it is possible that the physicians’ views expressed during the interviews may not be representative of the perceptions of all providers within our system, we remain less concerned that they represent widely different patient populations from physicians who did not participate in the qualitative component. In addition, we achieved reasonable variation in our provider sample, in terms of their characteristics across gender, age, race/ethnicity, and years of experience.

Given our team’s embedded nature within the organisation, it is also possible that the physicians we interviewed gave socially desirable responses out of self-awareness or an attempt to please the interviewer. However, two observed factors are likely to mitigate these concerns. First, the major qualitative themes, namely that physicians report difficulty communicating with antibiotic-seeking patients about evidence-based alternatives and that physicians face pressure to meet patient expectations, are consistent with the findings from our quantitative data, which revealed high rates of antibiotic prescribing, and only about one-third of patients receiving recommended care for acute sinusitis. Second, as with any qualitative research, the overall aim in terms of sample size is to reach saturation; namely, the point at which no new information is emerging from the data [ 33 ]. As we noted above, despite our relatively small sample size for interviews, the suggested drivers that physicians ascribed to inappropriate antibiotic prescribing patterns, and their subsequent recommendations for potential intervention, became quickly saturated during the interview process.

Further, it was not feasible in this small, exploratory study to interview patients in addition to physicians (both those who did or did not receive antibiotics during an acute sinusitis encounter). Certainly, speaking with patients would provide an opportunity to examine their opinions and the extent to which they agree or disagree with physicians’ perceptions of their needs and satisfaction as drivers of unnecessary antibiotic prescribing. Realistically, however, we believe that many health systems similar to ours will also lack resources to conduct large numbers of interviews due to funding and time constraints; this is another reason that our study is likely to be a useful, pragmatic example worthy of sharing outside of our health setting.

Finally, a pragmatic consideration when embedding qualitative research into a learning health system is to recognize and address when provider perceptions are at odds with evidence. For example, we found that some providers support integrated decision support, but experience and evidence suggests that these interventions are commonly disregarded and may offer limited benefits [ 34 , 35 ]. Within learning healthcare organisations, the perception of issues raised through qualitative investigation must be balanced with sound evidence and previous experience. Regardless, even when stakeholders’ perceptions may be false, identifying, understanding and addressing them through informed design and implementation may facilitate future success.

Our work offers an example of the benefits of embedded research, defined as work using operational funds to integrate scientific methods into projects addressing the practical needs of an organisation to provide generalizable knowledge. Therefore, although antibiotic stewardship and mixed methods studies are not alone novel, this paper presents a new model of research that incorporates providers’ viewpoints and contributes to the interpretation and validation of quantitative findings. We found that embedded qualitative research not only improved our understanding of quantitative findings, but efficiently moulded our intervention in ways that would not have been possible otherwise. Phase 2 of our research contributed to our ability “ …to understand and work in ‘real world’ or usual practice settings, paying particular attention to the audience that will use the research, the context in which implementation occurs, and the factors that influence implementation ” [ 36 , Summary Points figure, point 3].

We postulate that qualitative research can provide a clearer understanding of factors influencing practice patterns at the point of care and lead to more effective healthcare delivery interventions [ 7 , 37 – 41 ]. Furthermore, as ubiquitous use of EMR systems offers improved opportunities for quantitative analytics, embedding complementary qualitative methods into improvement efforts is possible, necessary, and likely to lead to more efficient interventions and better care delivery. Collaboration with clinical and operations leaders throughout this process offered rapid ability to apply findings within improvement efforts. Ultimately, our experience leveraging qualitative methods to target low-value antibiotic use can be a model for other learning healthcare systems undertaking care improvement efforts, since these methods can be readily applied to other diseases, specialties and stakeholders to successfully broaden the evaluation of clinical challenges at the point of care.

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Acknowledgements

We would like to acknowledge the internal research funding support of Ben Chu, MD, for the vision to support the Care Improvement Research Team, as well as the Southern California Physicians’ Medical Group (SCPMG) physician partners who participated in interviews for this study.

Internal Funding, Southern California Permanente Medical Group.

Authors’ contributions

CEMP participated in the acquisition of data, analysis and interpretation of data, and drafting the manuscript. CP participated in the analysis and interpretation of data and was involved in critically revising the manuscript for important intellectual content. EH TT, HN, MG and MK participated in critically revising the manuscript for important intellectual content. AS contributed to the conception and design, acquisition of data, analysis and interpretation of data, and drafting the manuscript. All authors read and approved the final manuscript.

Competing interests

Authors CEMP, CP, EEH, TT, HQN, MKG, MHK, and ALS declare that they have no competing interests.

Ethics approval and consent to participate

All procedures performed in studies involving human participants were in accordance with the ethical standards of the Kaiser Permanente Southern California institutional research committee and with the 1964 Helsinki declaration and its later amendments, or comparable ethical standards (the research reported herein was approved by the Kaiser Permanente Southern California Institutional Review Board on October 16, 2013).

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Semi-structured interview guide. (DOC 32 kb)

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Munoz-Plaza, C.E., Parry, C., Hahn, E.E. et al. Integrating qualitative research methods into care improvement efforts within a learning health system: addressing antibiotic overuse. Health Res Policy Sys 14 , 63 (2016). https://doi.org/10.1186/s12961-016-0122-3

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Health Research Policy and Systems

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Integrating qualitative research into evidence based practice

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This article attempts to provide an overview of qualitative tools and methods using mainly examples from diabetes research. The other articles in this issue of the Endocrinology and Metabolism Clinics of North America have demonstrated the enormous contribution made in the past 15 years or so by rigorous quantitative studies of prevalence, diagnosis, prognosis, and therapy to clinical decision-making in endocrinology. In the early 21st century, the state of qualitative research into such topics as the illness experience of diabetes; the barriers to effective self care and positive health choices; the design of complex educational interventions; the design of appropriate, acceptable and responsive health services; and the decision-making behavior of health professionals, is such that there remain many more questions than answers. But qualitative research is increasingly recognized as an important, legitimate and expanding dimension of evidence-based health care (18;19). It is highly likely that the major landmark studies in diabetes care over the next decade will build on an exploratory qualitative study or incorporate an explanatory or evaluative dimension based on qualitative methods.

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Mental health professionals’ perceived barriers and enablers to shared decision-making in risk assessment and risk management: a qualitative systematic review

• Nafiso Ahmed   ORCID: orcid.org/0000-0001-6732-1317 1 ,
• Sally Barlow 1 ,
• Lisa Reynolds 2 ,
• Nicholas Drey 3 ,
• Fareha Begum 1 ,
• Elizabeth Tuudah 4 &
• Alan Simpson 4 , 5 , 6  

BMC Psychiatry volume  21 , Article number:  594 ( 2021 ) Cite this article

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Risk assessment and risk management are fundamental processes in the delivery of safe and effective mental health care, yet studies have shown that service users are often not directly involved or are unaware that an assessment has taken place. Shared decision-making in mental health systems is supported by research and advocated in policy. This systematic review (PROSPERO: CRD42016050457) aimed to explore the perceived barriers and enablers to implementing shared decision-making in risk assessment and risk management from mental health professionals’ perspectives.

PRISMA guidelines were followed in the conduct and reporting of this review. Medline, CINAHL, EMBASE, PsycINFO, AMED and Internurse were systematically searched from inception to December 2019. Data were mapped directly into the Theoretical Domains Framework (TDF), a psychological framework that includes 14 domains relevant to behaviour change. Thematic synthesis was used to identify potential barriers and enablers within each domain. Data were then matched to the three components of the COM-B model: Capability, Opportunity, and Motivation.

Twenty studies met the eligibility criteria. The findings of this review indicate that shared decision-making is not a concept commonly used in mental health services when exploring processes of risk assessment and risk management. The key barriers identified were ‘power and best interest’ (social influences) and ‘my professional role and responsibility’ (social/professional role and identity). Key enablers were ‘therapeutic relationship’ (social influences) and ‘value collaboration’ (reinforcement). The salient barriers, enablers and linked TDF domains matched COM-B components ‘opportunity’ and ‘motivation’.

The review highlights the need for further empirical research to better understand current practice and mental health professionals’ experiences and attitudes towards shared decision-making in risk assessment and risk management.

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In mental health services, Shared Decision Making (SDM) is a means of delivering recovery orientated care through involving individuals in decisions about their care. For a decision to be ‘shared’ it must involve: at least two participants, the sharing of information, and a decision that is made and agreed upon by all parties [ 1 ]. These criteria are reflected in a shared decision model [ 2 ], which proposes that SDM occurs when all participants are informed, involved, and influential in the decision-making process. It is, however, emphasised that the three SDM components are on a sliding scale of influence that is dependent on context, capacity and desire to influence [ 2 ].

In shared decision-making, the aim is to recognise and utilise the unique expertise of healthcare professionals and services users to produce better decisions, and potentially better outcomes. While healthcare professionals may be experts in diagnosis, aetiology, prognosis, treatment options, and outcome probabilities [ 3 ]; service users are experts about the impact of the condition on their lives, their preferences, their personal attitudes towards risks, and often know what works best for them regarding their condition and treatment [ 4 ].

Studies report positive effects of SDM interventions on patient outcomes within different mental health populations. A randomised control trial (RCT) for people with depression reported a positive impact on patient participation in treatment decision-making and patient satisfaction [ 5 ]. Another RCT of an intervention for people with schizophrenia found SDM improved social recovery [ 6 ]. A pilot trial of a SDM intervention with veterans with post-traumatic stress disorder (PTSD) found positive impacts on patients’ receptivity to evidence-based treatment [ 7 ]. In contrast, some studies report no significant effect of SDM on clinical outcomes for people with severe mental illness [ 8 ] and depression [ 9 ], although they acknowledge that further long-term work may be needed to detect an effect.

Shared decision-making is endorsed and advocated in international healthcare policy [ 10 , 11 ]. Research has found that both service users and professionals support SDM. A qualitative research synthesis examining stakeholders’ attitudes towards SDM in mental health reported that service users valued their voice being heard, listened to, and supported to express themselves in encounters with professionals [ 12 ]. Several barriers to SDM were identified from the service user’s perspective, including feelings of perceived inadequacy, fear of being judged and a lack of trust. Barriers to SDM for professionals included: the service user lacking cognitive capacity or insight; where stigma negatively influenced the service user’s attitude towards SDM; and the professional’s own attitudes, motivation, willingness, empathy, and ability to engage and implement SDM. Professionals also highlighted challenges surrounding the competing priorities of their role, mainly them being accountable and responsible for managing risk.

Implementing SDM may pose challenges when there are concerns about the potential risks to self or others [ 13 , 14 ]. In these circumstances, mental health professionals (MHP) may not feel able to engage service users in decisions about their care. Potential barriers cited in the literature include inadequate training in suicide prevention [ 15 ]; fears about negative adverse reaction from individuals who pose a risk to other [ 16 ] and the ‘blame culture’ observed in mental health care [ 17 ], whereby MHPs are increasingly fearful of culpability and litigation. It has been suggested that this has resulted in more defensive or risk-averse practice intended to prevent harm [ 18 , 19 ].

Risk in mental health care is often used to refer to the possibility of an adverse event, outcome or behaviour arising from the unwanted actions of the service user [ 20 , 21 ]: notably risk of harm to self, others, or both, and may include self-harm, suicide, or violence. Risk also signifies the vulnerabilities that a person with mental illness may be exposed to, such as side effects from medication, exploitation, victimisation, bullying, and discrimination [ 22 , 23 ]. These risks occur frequently but are considered less in the assessment and management of risks [ 24 ].

Risk Assessment (RA) and Risk Management (RM) are the mechanisms used by MHPs to identify and minimise risk. There are three main approaches to assessing risk in mental health care: unstructured clinical judgement, actuarial methods and structured clinical judgement [ 25 ]. Unstructured clinical judgement typically involves professionals making judgements based on their clinical experience, opinion, intuition or ‘gut feeling’. Actuarial methods provide the assessor with a statistical means to combine information and calculate risk [ 26 ]. The subjective nature and poor predictive accuracy of these approaches have resulted in recommendations for them not to be used on their own in clinical practice [ 27 ]. Structured clinical judgement is considered the best approach to assessing risk [ 28 ]; this involves the use of a standardised RA tool to aid a professional in their clinical judgement [ 25 ].

Nonetheless, studies have found wide variability in the methods used to assess risk in UK mental health services [ 29 ] and forensic services in Australia and New Zealand [ 30 ]. These studies agree that a more consistent approach to RA is needed in mental health services. A multitude of evidence-based guidance is available to help standardise the process and support professionals in their assessment of risk [ 28 , 31 , 32 , 33 ]. A model for assessing suicidality, for example, provides guidance on the importance of language, the structure of the clinical interview, questioning, actuarial tools and risk categorisation [ 31 ].

Risk management is informed by the RA and includes the key actions or strategies that are designed to prevent or limit undesirable outcomes. Strategies may include treatment, supervision (i.e. help with planning daily activities), or monitoring (i.e. identifying and looking out for early warning signs) [ 28 ]. Several RM and safety planning interventions have been developed that can be used to mitigate, contain or improve RM [ 34 , 35 , 36 ].

The need to involve service users in the RA and RM process has been advocated in current professional guidance, policy, and research [ 28 , 33 , 37 ]. Involving service users is a means of minimising the gap between professionals and service users’ perspectives of risk [ 38 , 39 ] and thus, ensuring that the plan developed meets the individual’s needs [ 33 ]. This can lead to more accurate prediction and management of risk. Another potential benefit of involvement is that the individual is empowered to take responsibility for their choices, which can be a motivator for change [ 40 ]. It has been suggested that service user involvement can improve confidence and self-management skills, which may have long term impacts on reducing dependency on services, thereby increasing cost-effectiveness [ 37 ].

The UK Department of Health (DH) best practice guideline, specifically recommends SDM. Studies have shown, however, that service users are often unaware that a RA has taken place [ 41 , 42 ].

Although Higgins, Doyle [ 24 ] found that more than three-quarters of MHPs reported ‘always’ involving service users in risk assessment (77.8%) and safety planning (78.4%), only 50% of the respondents reported that they ‘always’ informed service users about their risk level, while only 43% of the respondents reported that they ‘always’ developed a shared responsibility with the service user for safety. Despite professionals reporting a high rate of service user involvement, these findings suggest that SDM is not routinely nor fully implemented.

A recent systematic review of mixed methods studies explored the service users’ perspective of helpful RM practices within mental health services [ 43 ]. Two categories of beneficial RM practices were identified: interpersonal relationships and communication; and agency and autonomy. A key finding was that trust fosters openness in relationships and enables discussion of risks, especially when service users felt that their distress was understood or their accounts were validated by professionals. Service users preferred professionals to maintain responsibility for RM initially but that eventually (at their own pace) they wished to regain control.

Other systematic reviews in this field have focused on interventions that promote SDM in RA and RM in forensic mental health settings [ 36 , 44 ]. A qualitative synthesis of research examining professionals attitudes towards SDM in the broader field of mental health exists [ 12 ], however, the authors acknowledge that the rigour of a full systematic review was not adopted. There is currently no systematic review of MHPs’ experiences and attitudes towards implementing SDM in the assessment and management of risk. A synthesis of studies will improve our understanding of the discrepancies in reported practice and identify factors that may help or hinder its implementation. The specific review question was:

What do mental health professionals perceive as the barriers and enablers to SDM in RA and RM?

This review was conducted in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines [ 45 ]. The protocol is registered on PROSPERO (CRD42016050457).

Eligibility criteria

The SPIDER framework (sample, phenomenon of interest, design, evaluation, research type) was used to specify eligibility criteria [ 46 ]. An additional S was added to capture the ‘setting’ criterion of adult mental health services. The SPIDER framework is a tool for developing a search strategy that has been designed from the PICO tool, specifically for reviews that aim to synthesise qualitative and mixed-method research studies. Due to limited resources, only studies written in English were included in the review. Table  1 lists the inclusion and exclusion criteria.

Search strategy

The EBSCOhost and Ovid Online platforms were used to search six electronic bibliographic databases: MEDLINE; EMBASE; PsycINFO; CINAHL; AMED and Internurse. Databases were searched from inception. The last search was completed on the 4th December 2019.

The search strategy used a combination of medical subject headings (MeSH) and free text key terms related to concepts of ‘mental health’, ‘health professionals’, ‘experiences’, ‘shared decision making’, ‘risk assessment’ and ‘risk management’. A full electronic search strategy is presented in Additional file 1 .

Two grey literature databases were also searched for relevant unpublished empirical research studies; Bielefeld Academic Search Engine (BASE) and Open Grey. Citation chaining was performed on all articles selected for inclusion to identify further studies of interest, and this involved searching the reference lists (backward chaining) and using Google Scholar to identify and review papers that had cited the included articles (forward chaining).

Study selection

Search results were imported into a systematic review management software EPPI-reviewer 4 [ 47 ] and duplicates removed. Two-stage screening was undertaken: stage 1 screened the titles and abstracts of studies against the eligibility criteria; stage 2, further assessed full-text of potential studies against the eligibility criteria. Study authors were contacted if more information was needed.

To minimise risk of bias, two authors (NA and FB) independently assessed titles and abstracts, and subsequently, full-text articles. A full-text review was carried out if at least one of the reviewers believed that the study met the inclusion criteria at the title and abstract screening stage. At full-text review, any discrepancies regarding eligibility were resolved by consensus and in consultation with a third author (AS/LR). Also, studies were included only once if they had multiple articles. The original or most relevant to the review question was used as the primary article for the study’s results.

The ‘Three I’s Scale of Influence Model’ [ 2 ] was used as a framework for study selection. Studies that reported on a least one of the three components (informed, involved and influential) of SDM in RA and RM were included. Stacey, Felton [ 2 ] definitions of the SDM components can be found in Additional file 2 .

Data extraction

An electronic data extraction form was devised and piloted on two of the included studies. The following data items were extracted: author(s), publication year, research question/aim, geographical location, sample size, setting, data collection, and method of analysis. The entire results sections, including direct quotations and author interpretations were imported directly into NVivo 11 software [ 48 ]. For studies with multiple publications, results were extracted and collated from all the linked reports but only one publication was used as the source of study results. Data extraction was carried out by the first author (NA) and cross-checked by a second author (SB): disagreements were resolved through discussion.

Quality appraisal

Dixon-Woods, Shaw [ 49 ] prompts were used to assess the quality and relevance of individual studies within this review. These prompts focus on the universal features of qualitative research and have been devised to ‘sensitise appraisers to the various dimensions of articles that require evaluation’ (p224). Two reviewers (NA and AJ or UF – see acknowledgements) read the papers independently and answered a series of questions on the quality appraisal checklist (e.g., Are the research questions clear?). They recorded their response as Yes (Y), No (N), Can’t tell (−). A rating system was then used to categorise the papers: Key paper (meets all quality criteria and clearly fits with review question); Satisfactory (meets most quality criteria and fits well to review question); Unsure (mixed responses to quality criteria and lack of clarity regarding relevance to review question); and Poor (does not meet quality criteria) [ 50 ]. No studies were excluded based on methodological quality; however, a sensitivity analysis (described below) was conducted to see the impact of removing lower-rated studies on the review findings. Any disagreements were discussed in full, and a rating was agreed (Additional file 3 ).

Data synthesis

The Theoretical Domains Framework (TDF) was used to explore the factors that influence the implementation of SDM in RA and RM with individuals with mental illness. The TDF is a behaviour change framework developed by a group of experts to simplify and integrate the large number of psychological theories relevant to behaviour change [ 51 ]. The TDF has been used by researchers across a range of healthcare settings to identify determinants of behaviour, namely the barriers and enablers to implementation, and to inform intervention design [ 52 ]. The original TDF has 12 domains derived from 33 health and social psychology theories and 128 key theoretical constructs. The framework was later validated and refined by Cane, O’Connor [ 52 ] to include 14 theoretical domains. The revised version of the framework was used in this review, Cane et al. (2012) definition of each domain is presented in (Additional file 2 ).

The Capability, Opportunity, and Motivation (COM-B) model was then used to condense the relevant TDF domains into three components that interact to predict behaviour. The model was developed as part of the broader framework of the behaviour change wheel [ 53 ] and provides a basis for intervention design. Each component of the COM-B model is divided into sub-components that capture important distinctions. Capability can be physical (e.g. skills) or psychological (e.g. interpersonal skills and knowledge) and represents an individual’s capacity to carry out the behaviour. Opportunity can be physical (e.g. environmental factors) and social (e.g. social influences) and is defined as all the factors that lie outside the individual that influence the behaviour. Motivation can be reflective (e.g. beliefs, intentions) or automatic (e.g. emotions) and characterises the brain processes that drive behaviour [ 53 ]. The most relevant TDF domains and linked components that are likely important to changing behaviour were identified [ 52 ].

The data synthesis process drew on established analysis methods recommended in the TDF guidelines [ 54 ], and used in previous studies applying the TDF [ 55 , 56 , 57 ]. Data synthesis involved the following six stages:

Step 1: developing a coding manual

A coding guide was developed based on the definitions of the three components of SDM [ 2 ], and the 14 domains and 84 constructs from Cane, O’Connor [ 52 ]. To provide guidance and confidence that a piece of text represents a domain, statements of how the domain applies to the research context were also included in the coding guide.

Step 2: pilot coding exercise

To ensure consistency between coders and refine the coding guideline, two coders (NA and ET) jointly coded the extracted findings from two randomly selected included papers. Any disagreements were discussed until consensus was reached; where consensus could not be reached a third researcher was consulted. The final version of the coding guide is included in Additional file 2 .

Step 3: coding papers and assessing reliability

Two researchers (NA and ET) independently coded the extracted findings from the remaining included papers using the coding guideline and via NVivo 11 software [ 48 ]. Findings relating to the target behaviour were coded to the SDM components [ 2 ], whereas potential barriers and enablers identified within the included papers were coded to the 14 domains of the TDF [ 52 ]. For example, the statement ‘“[the risk assessment is] one thing … you never discuss with service users just in case it alarms them”’ was coded to the ‘informed’ component and the ‘beliefs about consequences’ domain. If the participant’s response or the author’s interpretation represented more than one TDF domain, the text was coded to multiple domains. For example, “You know that you’re going to have suicide risk but you think well, the psychologists will deal with that bit … so to want to deal with it, even as part of the overall care, I think you’d want some type of supervision” was coded to both “social professionals’ role and identity” and “social influences”.

Inter-coder reliability was assessed by calculating the percentage agreement/disagreement (prior to consensus being reached), to measure consistency in coding within and across domains [ 58 ]. Reliability between two coders is considered acceptable if percentage agreement > 60% is achieved [ 54 ]. Discrepancies in coding were addressed by NA and ET with a consensus reached by discussion. AS was available to resolve any disputes over discrepancies; however, this was not required.

Step 4: developing overarching themes

Data within the domains were further analysed by the lead researcher (NA) using thematic synthesis [ 59 ]. Text coded into each domain were compared across papers, and findings representing similar ideas were grouped together. An overarching theme was then generated to categorise the initial themes. The overarching themes represent the specific factor perceived to influence SDM in RA and RM. For example, findings that suggest rapport, alliance or connection facilitate discussion about risk with service users were categorised as ‘therapeutic relationship’.

Step 5: mapping the COM-B model to the TDF domains

The relevant TDF domains were matched to the COM-B components [ 53 ]. The lead researcher (NA) drew on the links between the TDF domains and COM-B components identified by a group of experts in a consensus exercise reported in Cane, O’Connor [ 52 ]. The most relevant TDF domains (and themes within) were identified based on a frequency count of studies by domain. The TDF domains (and themes within) identified in at least 60% ( n  = 11) of the included studies were considered salient in understanding the target behaviour.

Step 6: sensitivity analysis

A sensitivity analysis was carried out to determine whether the methodological quality of studies impacted on the findings of the review. The results from the lowest-rated studies were removed from the synthesis to see if this influenced the key themes originally identified. No studies were excluded based on methodological quality.

A total of 8211 papers were yielded in the databases searches; and 1420 additional papers were included from other sources. After the removal of duplicates, a total of 8652 papers were eligible for screening. Following title and abstract screening, 8491 papers were excluded, and 161 full text papers were reviewed; 134 papers were excluded at full-text, and 20 studies (reported in 27 papers) met the inclusion criteria for this review. The PRISMA diagram of study selection can be seen in Fig.  1 .

A PRISMA flow diagram detailing the search strategy and results (Moher et al., 2009) [ 45 ]

All papers gained the rating of either key paper ( n  = 9) or satisfactory ( n  = 11). Papers were rated satisfactory if they did not meet all of the quality criteria and/or did not clearly fit with the review question. For example, papers that reported on specific risk decisions i.e. decision-making regarding neuroleptic medication [ 60 ]; specific RM practices i.e. clinician-patient alliance during mechanical restraint [ 61 ]; or contained very limited findings relevant to the review question [ 62 ] were rated satisfactory. Quality appraisal of the included studies can be seen in Additional file 3 .

Study characteristics

Over half of the included studies were conducted in the UK ( n  = 11), two in Belgium and the remaining studies in Australia, Canada, Taiwan, Denmark, Sweden, Italy, and Norway. The papers were published between 1999 and 2019 and were predominantly qualitative in design ( n  = 18). Semi-structured interviews were the most common data collection method ( n  = 15); four studies utilised focus groups [ 61 , 63 , 64 , 65 ]; and one used in-depth interviews [ 60 ]. Three studies used unstructured observation in addition to semi-structured interviews [ 66 , 67 , 68 ]. One study surveyed participants before conducting the qualitative interviews [ 69 ], and one described using a mixed-methods approach [ 65 ] comprising of focus groups and a quantitative analysis technique (i.e., inductive content analysis). Their findings, however, included several illustrative quotes that were deemed relevant to the review question.

Over half of the studies gathered data from adult psychiatric/forensic inpatient settings. ( n  = 12). Other settings included adult community mental health teams ( n  = 4) or both inpatient and community mental health settings ( n  = 4).

The included studies focused on a range of risk issues including suicidality ( n  = 7); risk to others [ 16 ]; self-neglect [ 70 ] and violence [ 64 ]. Two of the studies explored safety and risk within the broader topic of care-planning [ 20 , 62 ]. Other studies explored specific RM practices [ 61 , 65 , 68 , 71 ]; the tension between promoting recovery and managing risk [ 66 , 72 ]; and risk-minimisation and risk-taking [ 73 ]. One study examined clinicians’ perspectives of supporting service users who wished to discontinue from medication, which is a form of risk-taking [ 60 ]. Several of the included studies [ 16 , 20 , 66 , 71 , 74 ] had multiple publications from the same study [ 42 , 75 , 76 , 77 , 78 , 79 , 80 ]. The characteristics of the included studies are summarised in Table  2 .

Coder reliability and sensitivity analysis

Interrater agreement between the two coders across the three SDM components and 14 TDF domains ranged from 83.1 to 100%. For the sensitivity analysis, removing all the studies that gained an overall ‘satisfactory’ rating [ 60 , 61 , 62 , 63 , 64 , 67 , 68 , 69 , 70 , 73 , 74 ] resulted in one domain (knowledge) no longer being relevant. The same salient TDF domains were identified, with the addition of ‘beliefs about consequences’ and ‘emotions’. The findings of the sensitivity analysis demonstrated that the exclusion of these studies would have had a small impact on the overall findings.

The following section begins by summarising study findings relating to the components of SDM. Then, the key barriers and enablers within each of the TDF domains and COM-B components are summarised.

SDM components

None of the included studies directly referred to the term SDM in RA and RM with individuals with mental illness. However, all studies reported on at least one component of the ‘Three Is of Influence’ SDM model [ 2 ].

The ‘informed’ component was identified in several of the included studies. Professionals spoke openly about not discussing risk with service users; that RA was undertaken without the service user’s knowledge; and that the content of the RA was not always shared with the individual [ 16 , 20 , 62 , 63 , 66 , 81 ]. Conversely, in describing RM practices, professionals emphasised the importance of providing information to service users during observation and mechanical restraint [ 61 , 71 , 82 ]. In a study about forensic mental health services, professionals believed that keeping the service user informed and prepared before meetings, as well as discussing risk factors contributed to forming a trusting relationship [ 64 ].

In other studies, professionals acknowledged that they do not generally involve service users in the RA process [ 16 , 20 , 63 , 64 ], some reported involving service users for obligatory, and information gathering purposes [ 20 , 67 , 70 , 82 ]. Others believed it was important to involve and collaborate with service users in RM planning [ 64 , 65 , 83 ] for reasons discussed later.

The ‘influence’ component was also mapped to findings within this review. Some professionals described the need to make decisions on behalf of the service user [ 66 , 70 , 72 , 83 ], thus inhibiting the service user’s influence in the RA and RM process. Other professionals valued collaborating with service users and supporting their choice in decisions that involved risk [ 60 , 64 ]. Positive risk-taking was encouraged to support service users’ influence in decision-making [ 66 , 71 , 72 , 73 ].

Barriers and enablers

Through the use of the TDF [ 52 ], potential barriers and enablers to the SDM components in RA and RM were identified. Barriers and enablers ranged across twelve domains: knowledge, skills; social/professional role and identity; beliefs about capabilities; beliefs about consequences; reinforcement; intentions; goals; memory, attention and decision processes; environmental context and resources; social influences; and emotions . Relevant domains, and the how they relate to barriers and enablers are presented in Table  3 .

TDF domains (and the themes within) were then mapped to COM-B components and sub-components (Fig.  2 ). Based on a frequency count of studies by domain (Table 3 ), the most relevant domains were: social influences ( n  = 18); social/professional role and identity ( n  = 16); reinforcement ( n  = 14); goal ( n  = 13); environmental context and resources ( n  = 12) and beliefs about capabilities ( n  = 11). The key barriers were ‘power and best interest’ ( n  = 11) and ‘my professional role and responsibility’ ( n  = 12). The key enablers were ‘therapeutic relationship’ ( n  = 12), and ‘value collaboration’ ( n  = 11). The key barriers and enablers linked with TDF domains: ‘social influences’, ‘social/professional role and identity’ and ‘reinforcement’. The salient TDF domains (and barriers and enablers within) matched COM-B components: ‘opportunity’ and ‘motivation’.

TDF domains mapped to COM-B components and sub-components

Below, is a summary of the review findings of the barriers and enablers matched to TDF domain and COM-B component. Both first-order (direct quotations) and second-order (authors interpretation) themes are presented using illustrative quotations. Direct quotes have been presented in italics.

Professionals referred to policy and legislation in guiding them in supporting service users’ influence in decision-making or risk-taking [ 73 ]. In a study about service users who wish to discontinue taking neuroleptic medication [ 60 ], professionals working in early intervention services demonstrated openness towards supporting discontinuation and said that this was guided by their understanding of the National Institute for Health and Care Excellence (NICE) guidelines and research:

“The evidence we have is that it is worth giving most people a trial off the medication in order to see if their illness would be a relapsing recurring one” [ 60 ] p244)

Memory, attention and decision processes

Professionals’ implementation behaviours may have been influenced by the type of risk identified. In Langan [ 16 ], professionals believed that service users were less involved in a discussion about risk to others than risk to self:

“I think risk to other people tends to be thought of as being...You know, look at it historically and see what has happened before. Whereas, risk of suicide, although that’s important as well, tends to be more on how the patient feels, in terms of harming themselves, at that time. So, probably, risk to self is more centred on the patient” [ 16 ] p476)

In other studies, individual factors were key in determining service users’ readiness to be released from mechanical restraint [ 61 ]; and if risk-taking could be supported [ 60 , 73 ].

Some professionals attributed their reluctance to discussing suicide with service users to lack of formal training [ 69 , 74 , 81 , 83 ] . Limited training was also considered a barrier to engaging service users in RM:

“I have never done any training on this topic. I know that I may change my attitude towards the patients, but I don’t know how to do it” [ 65 ] p7)

Some professionals’ believed that additional training in risk would enhance their practice in caring for suicidal service users [ 69 ]. In a study about risk to others [ 16 ], a psychiatrist explained how training in RA and RM enabled him to discuss risk openly with a service user:

Professionals described adapting the language of risk to aid them in communicating with service users. In Langan and Lindow [ 42 ], professionals questioned the helpfulness in using the term risk: “I mean, I don’t like to use terms like ‘risk’ in that sense, but I mean I think he does accept that there are concerns about his behaviour” [ 42 ] p16). Instead, they reported using terms such as “early warning signs” or “relapse indicators” to facilitate discussion about risk with service users.

In a study about suicidal ideation, nurses reported adapting their communication to align with the service user’s communication preferences [ 82 ]:

“I ask patients how they feel about it when I talk to them about suicidality and how they prefer to have these interactions” [ 82 ] p2870)

Professionals also reported adapting their communication style with individuals who wished to discontinue taking neuroleptic medication [ 60 ]. The communication style that they adopted, i.e. collaborative or coercive, was based on their judgement of the risk factors and perceived outcome. Other professionals were reported to have used euphemistic language to avoid open dialogue about suicide with service users, : “oh, well, you know, if you’re not feeling right” [ 81 ] p105)).

Opportunity

Social influences.

The tension between managing risk and promoting recovery resulted in professionals experiencing role conflict [ 20 , 64 , 72 , 73 , 74 , 83 ]. Findings indicate that RM practices influence other aspects of care including therapeutic relationships, decision-making, and recovery [ 64 , 65 , 72 , 74 , 78 ]. In a study about continuous observation [ 71 , 77 ], a professional explained that while developing a therapeutic relationship with the service user was important, the utmost priority was maintaining safety:

“Every encounter with a patient should be made therapeutic … but it isn’t the primary purpose. The primary purpose is safety. I think the policy makes it very clear that safety trumps everything else” [ 77 ] p553)

Findings suggest that the pressure of managing risk could lead to power imbalances that inhibit service users’ involvement or influence in the decision-making process:

‘ … risk dominated the decision-making of professionals to such an extent that it defined how service users were understood and treated with limited evidence of power-sharing and involvement of service users in decisions’ [ 66 ] p1142).

Some professionals reported using coercion [ 68 ] to maintain the service users safety:

“If we indicate to patients that we are going to the seclusion room, then few patients say they’d “rather not”. But even when they say they’d “rather not”, we do it anyway, and then we emphasise, “Look, we want to protect you against your thoughts” [ 83 ] p1129)

Decisions about risk are sometimes made by professionals in what they believe to be the service user’s best interest [ 16 , 20 , 60 , 65 , 66 , 70 , 71 , 72 , 74 ]:

“Of course it can get difficult if the service user says no, “I want, I want to do it my way now,“ Um, and then you have to have a very different conversation and you need to say that we feel collectively as a team that at this stage it’s still a risk” [ 72 ] p4)

Factors relating directly to the service user, such as insight or mental capacity impede on the SDM components in RA and RM [ 42 , 60 , 61 , 65 , 70 , 71 , 72 , 73 , 83 ]:

“We can share the responsibility with the patient only when he has totally understood and accepted what is happening to himself, otherwise it is very difficult … ” [ 65 ] p7)

A risk-averse team culture was highlighted as a barrier to positive risk-taking [ 72 , 73 ] and the sharing of risk information with service users:

“To my shame, there are cases that I follow that culture, that I hide that risk assessment or secret. Why? Because I want to protect the individual from the knowledge of that.., their illness that they have can be a risk to themselves or to the others. It’s a practice that I’m not very comfortable but nevertheless, I raise my hand and say I have” [ 20 ] p6)

Some professionals’ reluctance to talk openly about suicide or trauma was reinforced in team culture [ 81 , 83 ]. In a study about service users who wished to discontinue from neuroleptic medication, professionals spoke about the change in service culture [ 60 ]. With the ‘old’ culture described as less acceptant of discontinuation and service users influence in the decision-making process.

Developing a therapeutic relationship and trust enabled professionals to facilitate discussion about risk with service users [ 16 , 69 , 82 ], as well to collaborate in RM [ 71 ] and gather information for RA purposes [ 67 ]:

“Rapport is key . .. it means I can get the information I need and that they’re more likely to actually tell me whether they’re still suicidal or not, and then from there we can work out what they need together” [ 69 ] p310)

Others felt that knowing the service user enabled them to support positive risk-taking:

“If you’re beginning to know a bit more about who they are, you might feel able to take greater therapeutic risks, in the hope of encouraging them to take responsibility” [ 71 ] p478)

A good therapeutic relationship was reported to be beneficial in challenging situation, for example, communicating negative decisions to service users [ 64 ]. Therapeutic trust and alliance were also viewed as critical strategies in engaging service users in RM [ 61 , 65 ].

Conversely, where the quality of the therapeutic relationship was less than ideal, it was considered a barrier to involving service users in RA and RM. Staff acknowledged that they were more likely to err on the side of caution with RM with service users that were less well known [ 71 ]. In other studies, professionals recognised that the therapeutic relationship may be better with one professional compared to another and that this could impact on the service user’s openness about risk and engagement in RM [ 61 , 77 ]. Authors concluded that professionals lack of interaction with service users and distance from their subjective experience suggest a relational distance [ 66 ]. In a study about the risk to others, professional’s tentativeness in language, for example, “I try to discuss risk with him” , was attributed to the quality of therapeutic relationship [ 42 ].

Supervision was considered essential and beneficial to support discussing risk, such as suicidality, with service users [ 69 , 81 , 83 ]; and perceived as an enabler to engaging service users in RM [ 71 , 77 ]:

Environmental context and resources

Professionals reported that they did not have the time or opportunity to get to know or directly relate to service users [ 65 , 66 , 71 ]. High caseloads, staff shortages, lack of training and resources were highlighted as factors that impede practice [ 63 , 66 , 69 ]. For example, in Forsberg, Tai [ 60 ], the pressure of increased caseloads, administration and service targets were reported as barriers to supporting service users to discontinue from medication. In a study about suicidal ideation, a nurse reported:

“Sometimes I spend more time reporting than being present with the person. That is a shame! I sometimes wonder what is most important, “What I write down or what I really do with that person?”. Of course, I believe it is important that you write down things in case something happens, but I also believe that there are too many administrative tasks” [ 83 ] p1130)

In Felton, Repper [ 66 ], professionals recognised that most of their time was spent in an office and that this caused a spatial distance between themselves and service users. Professionals were critical of organisational requirements to persistently document risks [ 82 ] and the amount of screening and assessments they needed to do for service users at risk of suicide. Instead, they questioned the value of these tasks as they believed it limited their time to meaningfully engage with service users.

Findings indicate that the setting or meeting structure used to discuss and make decisions about risk may impede on the service user’s involvement or influence in the process [ 62 , 66 ].

“Formal ward round-based review meetings were named as a place for risks to be discussed although not necessarily in the presence of service users” [ 62 ] p12).

Nurses reported the difficulty in communicating risk with service users when they were not invited to the RA meeting or not directly involved in developing the RA [ 64 ], and they believed that this hindered their ability to promote the service users participation in decisions. Professionals also highlighted that if the environment or setting was inappropriate, for example unsafe, noisy and distracting, this could impact on the service users’ involvement in RM [ 65 , 77 ].

Local policies and procedures were considered an aid to communication about risk with service users. In Langan [ 16 ], a voluntary sector organisation reported that their local policies encourage openness between professionals and service users about risk. Specifically, it was a requirement for professionals to complete RA forms jointly with service users, or the voluntary organisation operated an open access policy where individuals could freely access any information about their risks.

Social/professional role and identity

Findings indicate that professionals retain responsibility for managing risk [ 16 , 20 , 63 , 65 , 66 , 70 , 71 , 72 , 74 ], which may be influencing the service users involvement in the RA and RM process.

Findings mapped to this domain were associated with data within the ‘social influences’ domain, for example, professionals making decisions in the best interest of the service user or conforming to their teams’ risk averse culture. In Holley, Chambers [ 72 ], professionals described making decisions on behalf of service users by drawing on their professional knowledge and expertise for managing risk.

In many of the included studies, decision-making regarding risk was described as a team responsibility with little mention of the service user’s input [ 66 , 67 , 70 , 72 ]. In a study about service users who self-neglect, the author concluded that:

“it was not clear how often the teams made decisions based on what they thought was appropriate for the client, rather than on the client’s personal and informed choice” [ 70 ].

Professionals’ responsibility for reducing risk of harm to the individual and others conflicted with their intention to work collaboratively with the service user:

“You know they [meaning colleagues] have a duty to protect the populous from risk. Sometimes that may not chime with the personal interest of the patient ...” [ 60 ] p243)

Findings indicate that therapeutic engagement with individuals at risk of suicide was not always prioritised by nurses or realised by other MHP’s as part of their role [ 69 , 81 ]. For some, facilitating discussion about suicidality or trauma was considered the responsibility of the psychologist or psychiatrist [ 81 , 83 ] . For others, the service user was responsible for initiating discussion about suicidality:

“Basically, it’s down to them to tell us … we’ve no other way really unless they already told their relative so they’re gonna have to be speaking about it” [ 81 ] p105)

Beliefs about capabilities

Conversations with service users about risk and therapeutic risk-taking were described as difficult [ 16 , 66 , 81 ]. Some professionals lacked confidence in approaching the topic of ‘risk to others’ with service users [ 16 ], whereas others expressed a lack of confidence about how to talk with service users about suicide [ 81 ]. Professionals highlighted the need for more training on suicidality in their education:

‘ … although all participants are specialized in mental health nursing, one of them stated that she does not feel educated or confident enough to talk with patients about suicide, and another informant stated that there should be much more focus on caring for suicidal persons in the education’ [ 80 ] p33).

They acknowledged that risk information might not be shared with service users because of potential disagreements [ 20 ]. In a study about the risk to others, reaching a mutual agreement with an individual who disagreed with their identified risks was described as challenging:

“Very difficult. Very difficult. He’ll deny many of the incidents that I’ve told you about. He’ll say that the police are wrong, that they were harassing him. That he didn’t do these things. That he’s not a risk to other people …. So it’s very, very difficult, yeah, to find any middle ground there really” [ 42 ] p18)

When the service user and professional had conflicting viewpoints about discontinuation from medication, this impeded on the service user’s influence in the process [ 60 ]. The professional, instead, attempted to increase the service user’s agreement with their perspective.

On the other hand, the level of agreement about risk was highlighted as an enabler to involving service users in RM:

“Obviously, if they can acknowledge that there is a problem then we’re in a much better position to ensure that they put something in place which works” [ 42 ] p17)

Beliefs about consequences

Professionals expressed a range of views about the potential consequences of involving service users in the RA and RM process. Many were concerned that discussing risk with a service user or involving them in RM would cause the individual distress or harm [ 16 , 20 , 81 , 82 ]:

“Sometimes we avoid involving patients in order to preserve his saneness. In the psychiatric field is difficult to evaluate how much information the patient may tolerate” [ 65 ] p7)

Some professionals believed that discussing risk with others could be damaging to their therapeutic relationship with the service user and lead to disengagement [ 16 ] . Others were worried that involving service users in RA would reinforce stigma:

“the stigma of the mental health is still very prevalent in our society so by doing a risk assessment you more or less emphasise that stigma. .. You are a very risky person, you’re dangerous to yourself, and you’re dangerous to society, whereas this doesn’t go well with the recovery that we try to achieve for that person” [ 20 ] p8)

Professionals also feared negative consequences for themselves by discussing risk with service users. In Awenat, Peters [ 81 ], following a suicide, professionals were worried about being blamed for negligence. This resulted in them recording detailed information to clear themselves of blame should a suicide occur, as well as cautious discussions with service users in case they disclosed suicidal ideation. Similarly, in other studies, professionals highlighted the need to document decisions accurately and follow protocol to protect themselves from blame should their decision be questioned [ 74 , 83 ]. Professionals who encouraged risk-taking [ 73 ] or supported a service user’s wish to discontinue from medication [ 60 ] were also fearful of being blamed if negative outcomes occurred as a result of their decision.

“Risk-taking and promoting an individual’s freedom is encouraged but you’re conscious of the fact that if someone gets hurt, it’s not just them. .. criticism will be levelled at each level within the authority” [ 73 ] p180)

In other studies, fear of being blamed influenced the decision-making process and resulted in professionals adopting defensive or restrictive approaches [ 71 , 83 ].

Professionals’ concern for their personal safety acted as a barrier to both discussing ‘risk to others’ with service users [ 16 ] and involving service users in RM [ 65 ].

Some professionals were resigned to their current practice of not involving service users in the RA and RM process [ 20 ]. Others were willing to move towards involving service user more in the process:

“I’m quite open to change and including the person more in it, rather than it just being professionals talking about the risks” [ 16 ] p477)

Nonetheless, professionals’ aspirations for greater service user involvement in RA and RM did not necessarily reflect practice [ 72 ]:

‘Whilst everyone considered openness a good idea in principle, practice had not always caught up with aspirations’ [ 16 ].

The extent to which professionals consider the SDM components important in the RA and RM process influenced their implementation behaviour. For example, involving service users in RA and RM was not considered a priority for some professionals:

‘… they had given little consideration to how they could directly and actively involve clients in the assessment and management of risk’ [ 63 ] p810).

For others, interpersonal engagement with service users at risk of suicide was not prioritised [ 69 ] and discussion about suicidal ideation was considered counterproductive [ 68 ]. Obligatory reasons for involving service users in RA and RM practices, i.e. for assessment and information gathering purposes, were provided by professionals in several studies [ 20 , 61 , 63 , 65 , 67 , 70 , 74 , 82 , 83 ]:

“In order to take care of these suicidal patients, I try to build a trusting relationship with them. If I can build a good trusting relationship with them, they will trust me. They will give me the information I need and then we can explore their problems and try to help them to prevent future suicide attempts” [ 67 ] p687)

Forming agreements with service users (or a shared-decision) was considered an important step in the RM process [ 61 , 82 , 83 ]. In several studies, professionals emphasised the importance in openly communicating about risk, as well as providing the service user with knowledge and information about their risk [ 16 , 65 , 71 , 83 ]:

‘These nurses avoid imposing instant protection and instead engage in dialogue with patients that facilitates understanding of risks and potentially risky situations (e.g. taking a bath), the meaning that patients attach to risks and potentially risky situations, and what can be done to address risks’ [ 83 ] p1126).

Professionals acknowledged that RM was more likely to be helpful or effective if the service user was involved in the RA process [ 16 , 61 , 65 , 67 , 69 , 71 , 82 , 83 ]:

“I think it’s more of a risk if it’s other people talking about them behind their back. I think the more that things can be out in the open, the less of a risk it is” [ 42 ] p14)

Reinforcement

Professionals emphasised the importance in communicating to service users about their risk [ 72 ], as well as encouraging service users to talk about their distress or suicidality [ 81 , 82 , 83 ].

“The opportunity to interact is the ultimate. .. it’s a really important interaction.. . It can be the difference between life and death” [ 69 ] p309)

Some believed that RM was more likely helpful if service users were involved in decision-making [ 71 ]. Others valued supporting choice and collaboration, and this guided their interaction with service users who wished to discontinue from medication [ 60 ]. Positive risk-taking encouraged some professionals to support the service user’s choice or influence [ 61 , 62 , 71 , 72 , 73 ].

Professionals were motivated to support service users’ influence and positive risk-taking as this favoured autonomy, empowerment, and recovery [ 65 , 66 , 72 , 73 , 82 ]:

“if it is her wish to look after her finances then actually she is entitled and that needs to be explored very slowly with her [. . .] You can give her advice whether it’s a good decision or a bad decision but it’s her decision to take control of it” [ 72 ] p3)

Professionals stressed the importance in demonstrating empathy, compassion and instilling hope [ 67 , 69 , 77 , 82 , 83 ]. They believed that empathy supported service user to work through their distress and talk about suicidal feelings:

“I feel it’s important to feel and show empathy. If you don’t have empathy, you have no way of realising the patients’ torment and discomfort, or how serious or how strongly they feel about attempting suicide” [ 67 ] p687)

Professionals expressed negative emotions that impact on the assessment and management of risk with individuals with mental illness. In Barnicot, Insua-Summerhayes [ 71 ], anxiety in preventing harm and about being blamed may have influenced decision-making around continuous observation and led to restrictive practices. The possibility of a negative outcome from supporting a service user to discontinue from medication triggered anxiety in professionals [ 60 ]. While approaching the issue of risk created anxiety for some professionals [ 20 , 66 , 80 ], others expressed fear in approaching sensitive topics such as risk to others [ 16 ] or suicidal risk [ 69 , 80 , 81 ]. For example, a professional described their concern about possibly being the last person to have spoken to someone who takes their own life:

“I think it’s scary because you don’t want to be the last person having that conversation and they do something. You don’t want to think you’ve done anything that could have erm, actually aggravated them or tipped them over the edge or you’ve said something that has made them think about something” [ 81 ] p106)

The findings of this review indicate that SDM is not a term commonly used in mental health services when exploring processes of RA and RM. The components of SDM (i.e. informed, involved and influential) are referred to but are not being implemented consistently in the RA and RM process. MHPs spoke openly about not discussing risk with service users, involving service users in the process, or supporting their influence in decision-making about risk. This is in line with studies of service user accounts of RA and RM [ 20 , 38 , 42 ], where it was found that service users were often unaware of the RA and RM plan.

Through the use of the TDF [ 52 ], this systematic review has provided a comprehensive understanding of the perceived barriers and enablers to the SDM components in RA and RM from the literature. The salient COM-B components (and linked TDF domains) identified from the findings of this review were social and physical opportunity (i.e. ‘social influences’ and ‘environmental context and resources’), which refer to the social, cultural, and environmental influences on behaviour; and reflective and automatic motivation (i.e. ‘social/professional role and identity’, ‘beliefs about capabilities’, ‘goals’ and ‘reinforcement’), which characterise the cognitive processes that drive behaviour.

Mental health policy at an international level recommends that the processes of RA and RM are collaborative, person-centered and based on SDM [ 28 , 33 , 84 ]; however, there were many factors identified in this review that potentially impede on practice.

Managing risk and delivering recovery-orientated care were experienced as competing priorities that led to practice dilemma. The tension was believed to arise from organisational expectations, legal responsibilities, and contradictory frameworks of practice. Policy guidelines emphasise protection, harm minimisation, public safety, and duty of care. At the same time, they recommend recovery-orientated care based upon the components of SDM, positive risk-taking, therapeutic relationships, and empowerment. Our findings show professionals acknowledged the primacy of RM and the impact this had on other aspects of care including therapeutic relationships, and positive risk-taking. Boardman and Roberts [ 37 ] argue that it is possible to strike a balance between managing risk and delivering recovery-orientated care. They propose shifting towards a ‘person-centred’ approach to assessing and managing risk, based on SDM and collaborative safety planning.

Reluctance to talk about suicidality with service users or to support positive risk-taking were believed to be reinforced in a risk-averse team culture. Simpson [ 85 ] reported similar findings and highlighted the need for a ‘safe’ environment for professionals to openly discuss and disclose uncertainties, challenges, and alternative treatment options within the team. In addition, the findings of this review suggest that professionals tried to make decisions about risk with the service users’ best interests in mind, but at times this was the professionals’ interpretation of best interests and not necessarily the service users’. This is problematic as a capacitous service user is the expert on their own best interests, and even when not capacitous their wishes and views ought to be taken into account. Factors relating directly to the service user, such as capacity and insight, were considered barriers to discussing risk and collaborating with the service user in RM planning, thus impeding best interest decisions. It has been argued that paternalistic approaches to decision-making can cause practice conflicts between the ethical principles of autonomy on the one hand, and beneficence and non-maleficence on the other [ 86 ]. In mental health care, decision-making can be justified in terms of respecting the service user’s choice (autonomy), the professional’s duty to promote good (beneficence) or to prevent harm (non-maleficence) [ 86 ]. Paternalistic approaches may conflict with the autonomy of a non-capacitous service user, when decisions are made based on the professional’s interpretation of the best interests of the service user [ 87 ]. Experiencing a mental health crisis can lead to diminished capacity and competency to make a decision and in these circumstances, paternalistic interventions have been justified on the basis of the requirements of beneficence or non-maleficence [ 88 ]. Breeze [ 87 ] argues that the assessment of rationality or competency has the potential to be subjective and value-laden and although paternalism maybe justified in some situations, it should be exercised with caution. For example, where there is a disagreement between the professional and service user about what is considered ‘best interest’, it should not be assumed that the service user’s view is irrational or wrong, indeed S. 1 [ 4 ] Mental Capacity Act (2005) states that ‘A person is not to be treated as unable to make a decision merely because he makes an unwise decision’ [ 89 ].

Developing a therapeutic relationship and gaining trust enabled professionals to engage service users in a discussion about suicidality, as well as promote positive risk-taking and collaboration in RM. A recent review of service users’ perspectives of helpful RM practices [ 43 ] found that interpersonal relationship and communication aided RM to be inclusive for service users, and trust was considered to nurture open discussion about risk. In a study about risk-taking and recovery [ 90 ], service users also reported that therapeutic relationships developed trust, and this led to more collaborative discussion and decision-making.

Study findings suggest that professionals may be retaining responsibility for assessing and managing risk and thus limiting the extent to which service users are genuinely informed, involved or influential in the process. Negative beliefs about consequences inhibited professionals from implementing SDM in RA and RM. On the one hand, professionals were concerned that discussing risk could cause the service user distress, to disengage from services or to feel stigmatised. On the other hand, professionals were fearful of being blamed or investigated for negative outcomes from supporting risk-taking, i.e. service user who wished to discontinue taking medication, or discussing suicidality. Fear of blame led professionals to accurately document decision-making to protect themselves should their decision later be questioned, as well as cautious discussion with service users about suicidal thoughts. A culture of blame and risk aversion continues to pervade mental health services [ 91 ] that is said to derive from bureaucratic management styles, perception of failure, political pressures and media influences [ 17 , 92 ]. In a qualitative study, professionals expressed concern about restrictive practices potentially being eliminated as they felt that this would make it difficult to maintain safety [ 93 ], they were also concerned about being blamed when a negative event occurred.

Beliefs about consequences provoked negative emotions for some professionals who expressed fear and anxiety about preventing harm. Supervision was highlighted as a potential aid in discussing suicidal thoughts with service users. Tragic incidents can occur even after careful decision-making and thus professionals can expect to be accountable for decision-making and its implementation but not outcomes that they have no control over [ 94 ]. For MHPs to move away from paternalism and towards promoting SDM, change needs to occur at an organisational level [ 37 ]. Professionals need to know that they have managerial and institutional support, especially in situations where negative beliefs about consequences occur. It has been suggested that developing therapeutic risk-taking in practice requires organisations to support professionals by creating safe spaces to hold uncertainty, multidisciplinary working, shared responsibility, and supervision [ 88 ]. Institutional fear of things ‘going wrong’ is perhaps not helped by anxieties over the hyperbolic media coverage that can emerge when tragedies do occur [ 95 ]. The media’s negative portrayal of mental illness and misleading association with violence [ 96 , 97 ] may contribute to the continuing stigma of mental illness; the preoccupation with RM in mental health care; and misconstrued perceptions of the actual risk posed towards others by individuals with mental illness. In reality, 11% of all homicide convictions in the UK, during 2007–2017, were patient homicides, i.e. people in contact with mental health services in the 12 months prior to the offence [ 98 ].

A lack of confidence in discussing certain types of risks with service users was reported. For example, professionals expressed concern about approaching the topic of ‘risk to others’, and uncertainty in how to initiate discussions about suicide with service users. In mental health care, it is recognised that RA and RM practices focus on ‘dramatic risks’ that involve harm to self or others [ 37 ], however, these extreme harms relate to a minority of people in contact with mental health services [ 98 ]. Dixon [ 38 ] compared service users’ and professionals’ ratings of risk and found that service users identified more risks in relation to their vulnerability, such as self-neglect and suicide, than professionals did. In contrast, professionals identified more risks than service users in relation to risk of harm to others. A collaborative safety planning approach would broaden the focus on risk to include the service users perspectives and consideration of everyday risks that are common but less considered in the assessment and management of risk [ 37 ]. Changing the language of risk and basing discussions on safety-concerns offer an alternative way of involving service users’ in managing their own safety and opens discussion about risk [ 99 ].

In the current review, professionals questioned their ability to resolve disagreements with service users about risk to others. Consequently, conversations about risk with service users were described as difficult. A systematic review of services users’ perceptions of RM found that people’s desire for honesty and collaboration was fulfilled when they felt listened to, despite disagreements. Furthermore, some services users recognised disagreements as an authentic part of therapeutic relationships [ 43 ].

As found in the broader recovery-focused care-planning and coordination literature [ 75 ], high caseloads, staff shortages and a lack of resource were highlighted as factors that impede on practice. Professionals reported limited time or opportunity to support positive risk-taking or to meaningfully engage with service users. Also, insufficient training on RA and RM negatively impacted on professionals’ ability to talk openly about risk. In one of the included studies, a professional who had received RA training reported that it enabled him to face his fear in discussing risk openly with an individual who had previously damaged his office [ 16 ]. Higgins, Doyle [ 24 ] research findings indicate the need for training to enable professionals to adopt a collaborative RA and safety planning approach. They propose training delivered at undergraduate and postgraduate level that includes the skills necessary to engage service users and carers in the RA and safety planning process [ 24 ].

Professionals’ behaviours were guided by their perceived outcomes of implementing the SDM components in RA and RM. For some professionals, involving service users in RA and RM was not always a priority. Others, however, were motivated to involve service users for obligatory reasons, as well as to provide the service users with knowledge and understanding of risks and to collaborate in reducing risks. Similar to the findings of Kaminskiy, Senner [ 12 ] qualitative synthesis, this review found support from MHPs for the idea of implementing SDM or working in collaboration with service users. Professionals’ emphasised the importance in communicating risk with service users, promoting empowerment and demonstrating empathy. Some described adjusting their language to facilitate discussions about risk, while others expressed aspiration towards involving service users in future RA and RM practices, though it was recognised that aspiration may have not yet influenced practice.

Strengths and limitations

This is the first systematic review of evidence reporting MHPs’ experiences and attitudes towards SDM in RA and RM, which uses both the TDF and COM-B model to synthesise findings. The synthesis was informed by several psychological theories of behaviour change and empirical findings of included studies. However, this review is not without limitation. First, the review focused on MHPs’ experiences of SDM in RA and RM: thus, the service users’ perspective was not examined, however, a recent mixed-studies systematic review explored helpful RM practices from the service users’ viewpoint [ 43 ]. Secondly, despite conducting systematic searches, SDM is not a well-indexed term, and researchers have varying interpretations of the concept: therefore, our search strategy may have inadvertently missed relevant studies. To capture relevant studies in our searches, we used MeSH terms for SDM and included additional free text key terms related to the concept of SDM (e.g., service user involvement, patient-centred and recovery). Thirdly, it is important to note that the decision to conduct a qualitative systematic review was derived from the findings of a scoping search, which indicated that qualitative methods dominated this field of research. A quantitative survey study [ 24 ] was identified, however, but excluded on the review’s eligibility criteria. Although the key focus of Higgins, Doyle [ 24 ] study was to explore mental health nurses’ practices and confidence in RA and safety planning, there was a small amount of data relevant to the findings of this review (i.e. stakeholders’ involvement in the RA and RM process). Lastly, the wide variation in methods employed in qualitative research poses challenges in the assessment of quality and synthesis of findings for the purpose of a review [ 49 , 100 ]. Indeed, the present review included studies that differed significantly in design, data collection, and analysis method. Also, qualitative research is often criticised for lack of generalisability. Therefore, the strength of recommendation that can be made from the evidence included in this review is limited. Future reviews may wish to further develop the themes identified in this review by sourcing data from quantitative work.

The findings of this review indicate that there may be limited SDM in RA and RM with individuals with mental health problems. Langan and Lindow [ 42 ] reported this over 15 years ago, and despite policies endorsing SDM it, largely, is not happening. This review identifies some of the key issues that may be underpinning this lack of action and warrant further intervention and investigation.

Through the use of the TDF and COM-B model, this review explored MHPs’ perceived barriers and enablers to SDM in RA and RM. Key barriers were ‘power and best interest’ and ‘my professional role and responsibility’, whereas key enablers were ‘therapeutic relationship’ and ‘value collaboration’. These barriers, enablers and TDF domains matched COM-B components ‘opportunity’ and ‘motivation’.

The finding from the present study contributes to existing knowledge of SDM by providing insight into MHPs’ perceived barriers and enablers to implementing SDM in RA and RM. Consistent with a qualitative synthesis study that examined attitudes towards SDM in the broader field of mental health [ 12 ], a lack of capacity was identified as a barrier to SDM in RA and RM. Although justified in some situations, mental capacity fluctuates with time and research indicates that most psychiatric in-patients are capable of making key treatment decisions [ 101 ]. There are also methods that can be used to incorporate service users’ views, such as decision aids, advance directives and advocacy. Therefore, diminished capacity alone should not be reason to exclude the service user from the RA and RM process, as the service user may still be able to offer valuable insight into their perspective and experiences with risk that can inform the RM plan. The present study also highlights the importance of the therapeutic relationship in facilitating discussions about risk with service users, which corroborates findings from a previous systematic review of service users’ perspectives of RM [ 43 ]. Therefore, increasing professionals’ opportunity to develop the therapeutic relationship may influence their motivation to implement SDM in RA and RM.

The findings of this review highlight a complex range of social, cultural and environmental factors that together influence SDM in RA and RM. This information will be relevant to policymakers and practitioners and can also be used to develop targeted interventions aimed at changing practice in this challenging area. However, these findings are based on a small number of studies that are heterogeneous in aim and objective. Furthermore, none of the included studies directly investigated SDM in RA and RM with individuals with mental illness. Therefore, further extensive work is needed to better understand how best to implement SDM in RA and RM so that all parties feel comfortable. A qualitative study by the lead author, directly investigating the barriers and enablers to SDM in RA and RM, is currently underway and has been developed from the findings of this review. The benefits of implementing SDM in RA and RM planning is also insufficiently researched. It is important to build an evidence base on the impact, as well as the acceptability and feasibility of a collaborative approach.

Availability of data and materials

Data sharing is not applicable to this article as no datasets were generated or analysed during the current study.

Abbreviations

Shared Decision Making

Mental Health Professional

Risk Assessment

Risk Management

Department of Health

Preferred Reporting Items for Systematic Reviews and Meta-Analyses

International prospective register of systematic reviews

Sample, Phenomenon of Interest, Design, Evaluation, Research type

Bielefeld Academic Search Engine

Theoretical Domains Framework

Capability, Opportunity, Motivation to Behaviour

United Kingdom

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Acknowledgements

I would like to thank Dr. Afnan Aljaffary, and Dr. Una Foye for their support with appraising the quality of studies within this review.

This research was part of a PhD funded by City, University of London, and East London NHS Foundation Trust. Neither funding body had a role in the design of the study, data collection, analysis, interpretation of data or writing the manuscript.

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NA contributed to the design of study, conducted the searches, screening, quality appraisal, data extraction, analysis, synthesis, drafted and edited the manuscript. AS contributed to the design of the study, supported screening, analysis, synthesis, and revised the manuscript. SB contributed to the design of the study, supported data extraction, screening and revised the manuscript. LR contributed to the design of the study, supported screening, and revised the manuscript. ND advised and revised the manuscript. FB supported title and abstract, and full text screening. ET contributed to the analysis and interpretation of data. All authors have read and approved the final version of the manuscript.

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Ahmed, N., Barlow, S., Reynolds, L. et al. Mental health professionals’ perceived barriers and enablers to shared decision-making in risk assessment and risk management: a qualitative systematic review. BMC Psychiatry 21 , 594 (2021). https://doi.org/10.1186/s12888-021-03304-0

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Qualitative Research: Data Collection, Analysis, and Management

Introduction.

In an earlier paper, 1 we presented an introduction to using qualitative research methods in pharmacy practice. In this article, we review some principles of the collection, analysis, and management of qualitative data to help pharmacists interested in doing research in their practice to continue their learning in this area. Qualitative research can help researchers to access the thoughts and feelings of research participants, which can enable development of an understanding of the meaning that people ascribe to their experiences. Whereas quantitative research methods can be used to determine how many people undertake particular behaviours, qualitative methods can help researchers to understand how and why such behaviours take place. Within the context of pharmacy practice research, qualitative approaches have been used to examine a diverse array of topics, including the perceptions of key stakeholders regarding prescribing by pharmacists and the postgraduation employment experiences of young pharmacists (see “Further Reading” section at the end of this article).

In the previous paper, 1 we outlined 3 commonly used methodologies: ethnography 2 , grounded theory 3 , and phenomenology. 4 Briefly, ethnography involves researchers using direct observation to study participants in their “real life” environment, sometimes over extended periods. Grounded theory and its later modified versions (e.g., Strauss and Corbin 5 ) use face-to-face interviews and interactions such as focus groups to explore a particular research phenomenon and may help in clarifying a less-well-understood problem, situation, or context. Phenomenology shares some features with grounded theory (such as an exploration of participants’ behaviour) and uses similar techniques to collect data, but it focuses on understanding how human beings experience their world. It gives researchers the opportunity to put themselves in another person’s shoes and to understand the subjective experiences of participants. 6 Some researchers use qualitative methodologies but adopt a different standpoint, and an example of this appears in the work of Thurston and others, 7 discussed later in this paper.

Qualitative work requires reflection on the part of researchers, both before and during the research process, as a way of providing context and understanding for readers. When being reflexive, researchers should not try to simply ignore or avoid their own biases (as this would likely be impossible); instead, reflexivity requires researchers to reflect upon and clearly articulate their position and subjectivities (world view, perspectives, biases), so that readers can better understand the filters through which questions were asked, data were gathered and analyzed, and findings were reported. From this perspective, bias and subjectivity are not inherently negative but they are unavoidable; as a result, it is best that they be articulated up-front in a manner that is clear and coherent for readers.

THE PARTICIPANT’S VIEWPOINT

What qualitative study seeks to convey is why people have thoughts and feelings that might affect the way they behave. Such study may occur in any number of contexts, but here, we focus on pharmacy practice and the way people behave with regard to medicines use (e.g., to understand patients’ reasons for nonadherence with medication therapy or to explore physicians’ resistance to pharmacists’ clinical suggestions). As we suggested in our earlier article, 1 an important point about qualitative research is that there is no attempt to generalize the findings to a wider population. Qualitative research is used to gain insights into people’s feelings and thoughts, which may provide the basis for a future stand-alone qualitative study or may help researchers to map out survey instruments for use in a quantitative study. It is also possible to use different types of research in the same study, an approach known as “mixed methods” research, and further reading on this topic may be found at the end of this paper.

The role of the researcher in qualitative research is to attempt to access the thoughts and feelings of study participants. This is not an easy task, as it involves asking people to talk about things that may be very personal to them. Sometimes the experiences being explored are fresh in the participant’s mind, whereas on other occasions reliving past experiences may be difficult. However the data are being collected, a primary responsibility of the researcher is to safeguard participants and their data. Mechanisms for such safeguarding must be clearly articulated to participants and must be approved by a relevant research ethics review board before the research begins. Researchers and practitioners new to qualitative research should seek advice from an experienced qualitative researcher before embarking on their project.

DATA COLLECTION

Whatever philosophical standpoint the researcher is taking and whatever the data collection method (e.g., focus group, one-to-one interviews), the process will involve the generation of large amounts of data. In addition to the variety of study methodologies available, there are also different ways of making a record of what is said and done during an interview or focus group, such as taking handwritten notes or video-recording. If the researcher is audio- or video-recording data collection, then the recordings must be transcribed verbatim before data analysis can begin. As a rough guide, it can take an experienced researcher/transcriber 8 hours to transcribe one 45-minute audio-recorded interview, a process than will generate 20–30 pages of written dialogue.

Many researchers will also maintain a folder of “field notes” to complement audio-taped interviews. Field notes allow the researcher to maintain and comment upon impressions, environmental contexts, behaviours, and nonverbal cues that may not be adequately captured through the audio-recording; they are typically handwritten in a small notebook at the same time the interview takes place. Field notes can provide important context to the interpretation of audio-taped data and can help remind the researcher of situational factors that may be important during data analysis. Such notes need not be formal, but they should be maintained and secured in a similar manner to audio tapes and transcripts, as they contain sensitive information and are relevant to the research. For more information about collecting qualitative data, please see the “Further Reading” section at the end of this paper.

DATA ANALYSIS AND MANAGEMENT

If, as suggested earlier, doing qualitative research is about putting oneself in another person’s shoes and seeing the world from that person’s perspective, the most important part of data analysis and management is to be true to the participants. It is their voices that the researcher is trying to hear, so that they can be interpreted and reported on for others to read and learn from. To illustrate this point, consider the anonymized transcript excerpt presented in Appendix 1 , which is taken from a research interview conducted by one of the authors (J.S.). We refer to this excerpt throughout the remainder of this paper to illustrate how data can be managed, analyzed, and presented.

Interpretation of Data

Interpretation of the data will depend on the theoretical standpoint taken by researchers. For example, the title of the research report by Thurston and others, 7 “Discordant indigenous and provider frames explain challenges in improving access to arthritis care: a qualitative study using constructivist grounded theory,” indicates at least 2 theoretical standpoints. The first is the culture of the indigenous population of Canada and the place of this population in society, and the second is the social constructivist theory used in the constructivist grounded theory method. With regard to the first standpoint, it can be surmised that, to have decided to conduct the research, the researchers must have felt that there was anecdotal evidence of differences in access to arthritis care for patients from indigenous and non-indigenous backgrounds. With regard to the second standpoint, it can be surmised that the researchers used social constructivist theory because it assumes that behaviour is socially constructed; in other words, people do things because of the expectations of those in their personal world or in the wider society in which they live. (Please see the “Further Reading” section for resources providing more information about social constructivist theory and reflexivity.) Thus, these 2 standpoints (and there may have been others relevant to the research of Thurston and others 7 ) will have affected the way in which these researchers interpreted the experiences of the indigenous population participants and those providing their care. Another standpoint is feminist standpoint theory which, among other things, focuses on marginalized groups in society. Such theories are helpful to researchers, as they enable us to think about things from a different perspective. Being aware of the standpoints you are taking in your own research is one of the foundations of qualitative work. Without such awareness, it is easy to slip into interpreting other people’s narratives from your own viewpoint, rather than that of the participants.

To analyze the example in Appendix 1 , we will adopt a phenomenological approach because we want to understand how the participant experienced the illness and we want to try to see the experience from that person’s perspective. It is important for the researcher to reflect upon and articulate his or her starting point for such analysis; for example, in the example, the coder could reflect upon her own experience as a female of a majority ethnocultural group who has lived within middle class and upper middle class settings. This personal history therefore forms the filter through which the data will be examined. This filter does not diminish the quality or significance of the analysis, since every researcher has his or her own filters; however, by explicitly stating and acknowledging what these filters are, the researcher makes it easer for readers to contextualize the work.

Transcribing and Checking

For the purposes of this paper it is assumed that interviews or focus groups have been audio-recorded. As mentioned above, transcribing is an arduous process, even for the most experienced transcribers, but it must be done to convert the spoken word to the written word to facilitate analysis. For anyone new to conducting qualitative research, it is beneficial to transcribe at least one interview and one focus group. It is only by doing this that researchers realize how difficult the task is, and this realization affects their expectations when asking others to transcribe. If the research project has sufficient funding, then a professional transcriber can be hired to do the work. If this is the case, then it is a good idea to sit down with the transcriber, if possible, and talk through the research and what the participants were talking about. This background knowledge for the transcriber is especially important in research in which people are using jargon or medical terms (as in pharmacy practice). Involving your transcriber in this way makes the work both easier and more rewarding, as he or she will feel part of the team. Transcription editing software is also available, but it is expensive. For example, ELAN (more formally known as EUDICO Linguistic Annotator, developed at the Technical University of Berlin) 8 is a tool that can help keep data organized by linking media and data files (particularly valuable if, for example, video-taping of interviews is complemented by transcriptions). It can also be helpful in searching complex data sets. Products such as ELAN do not actually automatically transcribe interviews or complete analyses, and they do require some time and effort to learn; nonetheless, for some research applications, it may be a valuable to consider such software tools.

All audio recordings should be transcribed verbatim, regardless of how intelligible the transcript may be when it is read back. Lines of text should be numbered. Once the transcription is complete, the researcher should read it while listening to the recording and do the following: correct any spelling or other errors; anonymize the transcript so that the participant cannot be identified from anything that is said (e.g., names, places, significant events); insert notations for pauses, laughter, looks of discomfort; insert any punctuation, such as commas and full stops (periods) (see Appendix 1 for examples of inserted punctuation), and include any other contextual information that might have affected the participant (e.g., temperature or comfort of the room).

Dealing with the transcription of a focus group is slightly more difficult, as multiple voices are involved. One way of transcribing such data is to “tag” each voice (e.g., Voice A, Voice B). In addition, the focus group will usually have 2 facilitators, whose respective roles will help in making sense of the data. While one facilitator guides participants through the topic, the other can make notes about context and group dynamics. More information about group dynamics and focus groups can be found in resources listed in the “Further Reading” section.

Reading between the Lines

During the process outlined above, the researcher can begin to get a feel for the participant’s experience of the phenomenon in question and can start to think about things that could be pursued in subsequent interviews or focus groups (if appropriate). In this way, one participant’s narrative informs the next, and the researcher can continue to interview until nothing new is being heard or, as it says in the text books, “saturation is reached”. While continuing with the processes of coding and theming (described in the next 2 sections), it is important to consider not just what the person is saying but also what they are not saying. For example, is a lengthy pause an indication that the participant is finding the subject difficult, or is the person simply deciding what to say? The aim of the whole process from data collection to presentation is to tell the participants’ stories using exemplars from their own narratives, thus grounding the research findings in the participants’ lived experiences.

Smith 9 suggested a qualitative research method known as interpretative phenomenological analysis, which has 2 basic tenets: first, that it is rooted in phenomenology, attempting to understand the meaning that individuals ascribe to their lived experiences, and second, that the researcher must attempt to interpret this meaning in the context of the research. That the researcher has some knowledge and expertise in the subject of the research means that he or she can have considerable scope in interpreting the participant’s experiences. Larkin and others 10 discussed the importance of not just providing a description of what participants say. Rather, interpretative phenomenological analysis is about getting underneath what a person is saying to try to truly understand the world from his or her perspective.

Once all of the research interviews have been transcribed and checked, it is time to begin coding. Field notes compiled during an interview can be a useful complementary source of information to facilitate this process, as the gap in time between an interview, transcribing, and coding can result in memory bias regarding nonverbal or environmental context issues that may affect interpretation of data.

Coding refers to the identification of topics, issues, similarities, and differences that are revealed through the participants’ narratives and interpreted by the researcher. This process enables the researcher to begin to understand the world from each participant’s perspective. Coding can be done by hand on a hard copy of the transcript, by making notes in the margin or by highlighting and naming sections of text. More commonly, researchers use qualitative research software (e.g., NVivo, QSR International Pty Ltd; www.qsrinternational.com/products_nvivo.aspx ) to help manage their transcriptions. It is advised that researchers undertake a formal course in the use of such software or seek supervision from a researcher experienced in these tools.

Returning to Appendix 1 and reading from lines 8–11, a code for this section might be “diagnosis of mental health condition”, but this would just be a description of what the participant is talking about at that point. If we read a little more deeply, we can ask ourselves how the participant might have come to feel that the doctor assumed he or she was aware of the diagnosis or indeed that they had only just been told the diagnosis. There are a number of pauses in the narrative that might suggest the participant is finding it difficult to recall that experience. Later in the text, the participant says “nobody asked me any questions about my life” (line 19). This could be coded simply as “health care professionals’ consultation skills”, but that would not reflect how the participant must have felt never to be asked anything about his or her personal life, about the participant as a human being. At the end of this excerpt, the participant just trails off, recalling that no-one showed any interest, which makes for very moving reading. For practitioners in pharmacy, it might also be pertinent to explore the participant’s experience of akathisia and why this was left untreated for 20 years.

One of the questions that arises about qualitative research relates to the reliability of the interpretation and representation of the participants’ narratives. There are no statistical tests that can be used to check reliability and validity as there are in quantitative research. However, work by Lincoln and Guba 11 suggests that there are other ways to “establish confidence in the ‘truth’ of the findings” (p. 218). They call this confidence “trustworthiness” and suggest that there are 4 criteria of trustworthiness: credibility (confidence in the “truth” of the findings), transferability (showing that the findings have applicability in other contexts), dependability (showing that the findings are consistent and could be repeated), and confirmability (the extent to which the findings of a study are shaped by the respondents and not researcher bias, motivation, or interest).

One way of establishing the “credibility” of the coding is to ask another researcher to code the same transcript and then to discuss any similarities and differences in the 2 resulting sets of codes. This simple act can result in revisions to the codes and can help to clarify and confirm the research findings.

Theming refers to the drawing together of codes from one or more transcripts to present the findings of qualitative research in a coherent and meaningful way. For example, there may be examples across participants’ narratives of the way in which they were treated in hospital, such as “not being listened to” or “lack of interest in personal experiences” (see Appendix 1 ). These may be drawn together as a theme running through the narratives that could be named “the patient’s experience of hospital care”. The importance of going through this process is that at its conclusion, it will be possible to present the data from the interviews using quotations from the individual transcripts to illustrate the source of the researchers’ interpretations. Thus, when the findings are organized for presentation, each theme can become the heading of a section in the report or presentation. Underneath each theme will be the codes, examples from the transcripts, and the researcher’s own interpretation of what the themes mean. Implications for real life (e.g., the treatment of people with chronic mental health problems) should also be given.

DATA SYNTHESIS

In this final section of this paper, we describe some ways of drawing together or “synthesizing” research findings to represent, as faithfully as possible, the meaning that participants ascribe to their life experiences. This synthesis is the aim of the final stage of qualitative research. For most readers, the synthesis of data presented by the researcher is of crucial significance—this is usually where “the story” of the participants can be distilled, summarized, and told in a manner that is both respectful to those participants and meaningful to readers. There are a number of ways in which researchers can synthesize and present their findings, but any conclusions drawn by the researchers must be supported by direct quotations from the participants. In this way, it is made clear to the reader that the themes under discussion have emerged from the participants’ interviews and not the mind of the researcher. The work of Latif and others 12 gives an example of how qualitative research findings might be presented.

Planning and Writing the Report

As has been suggested above, if researchers code and theme their material appropriately, they will naturally find the headings for sections of their report. Qualitative researchers tend to report “findings” rather than “results”, as the latter term typically implies that the data have come from a quantitative source. The final presentation of the research will usually be in the form of a report or a paper and so should follow accepted academic guidelines. In particular, the article should begin with an introduction, including a literature review and rationale for the research. There should be a section on the chosen methodology and a brief discussion about why qualitative methodology was most appropriate for the study question and why one particular methodology (e.g., interpretative phenomenological analysis rather than grounded theory) was selected to guide the research. The method itself should then be described, including ethics approval, choice of participants, mode of recruitment, and method of data collection (e.g., semistructured interviews or focus groups), followed by the research findings, which will be the main body of the report or paper. The findings should be written as if a story is being told; as such, it is not necessary to have a lengthy discussion section at the end. This is because much of the discussion will take place around the participants’ quotes, such that all that is needed to close the report or paper is a summary, limitations of the research, and the implications that the research has for practice. As stated earlier, it is not the intention of qualitative research to allow the findings to be generalized, and therefore this is not, in itself, a limitation.

Planning out the way that findings are to be presented is helpful. It is useful to insert the headings of the sections (the themes) and then make a note of the codes that exemplify the thoughts and feelings of your participants. It is generally advisable to put in the quotations that you want to use for each theme, using each quotation only once. After all this is done, the telling of the story can begin as you give your voice to the experiences of the participants, writing around their quotations. Do not be afraid to draw assumptions from the participants’ narratives, as this is necessary to give an in-depth account of the phenomena in question. Discuss these assumptions, drawing on your participants’ words to support you as you move from one code to another and from one theme to the next. Finally, as appropriate, it is possible to include examples from literature or policy documents that add support for your findings. As an exercise, you may wish to code and theme the sample excerpt in Appendix 1 and tell the participant’s story in your own way. Further reading about “doing” qualitative research can be found at the end of this paper.

CONCLUSIONS

Qualitative research can help researchers to access the thoughts and feelings of research participants, which can enable development of an understanding of the meaning that people ascribe to their experiences. It can be used in pharmacy practice research to explore how patients feel about their health and their treatment. Qualitative research has been used by pharmacists to explore a variety of questions and problems (see the “Further Reading” section for examples). An understanding of these issues can help pharmacists and other health care professionals to tailor health care to match the individual needs of patients and to develop a concordant relationship. Doing qualitative research is not easy and may require a complete rethink of how research is conducted, particularly for researchers who are more familiar with quantitative approaches. There are many ways of conducting qualitative research, and this paper has covered some of the practical issues regarding data collection, analysis, and management. Further reading around the subject will be essential to truly understand this method of accessing peoples’ thoughts and feelings to enable researchers to tell participants’ stories.

Appendix 1. Excerpt from a sample transcript

The participant (age late 50s) had suffered from a chronic mental health illness for 30 years. The participant had become a “revolving door patient,” someone who is frequently in and out of hospital. As the participant talked about past experiences, the researcher asked:

• What was treatment like 30 years ago?
• Umm—well it was pretty much they could do what they wanted with you because I was put into the er, the er kind of system er, I was just on
• endless section threes.
• Really…
• But what I didn’t realize until later was that if you haven’t actually posed a threat to someone or yourself they can’t really do that but I didn’t know
• that. So wh-when I first went into hospital they put me on the forensic ward ’cause they said, “We don’t think you’ll stay here we think you’ll just
• run-run away.” So they put me then onto the acute admissions ward and – er – I can remember one of the first things I recall when I got onto that
• ward was sitting down with a er a Dr XXX. He had a book this thick [gestures] and on each page it was like three questions and he went through
• all these questions and I answered all these questions. So we’re there for I don’t maybe two hours doing all that and he asked me he said “well
• when did somebody tell you then that you have schizophrenia” I said “well nobody’s told me that” so he seemed very surprised but nobody had
• actually [pause] whe-when I first went up there under police escort erm the senior kind of consultants people I’d been to where I was staying and
• ermm so er [pause] I . . . the, I can remember the very first night that I was there and given this injection in this muscle here [gestures] and just
• having dreadful side effects the next day I woke up [pause]
• . . . and I suffered that akathesia I swear to you, every minute of every day for about 20 years.
• Oh how awful.
• And that side of it just makes life impossible so the care on the wards [pause] umm I don’t know it’s kind of, it’s kind of hard to put into words
• [pause]. Because I’m not saying they were sort of like not friendly or interested but then nobody ever seemed to want to talk about your life [pause]
• nobody asked me any questions about my life. The only questions that came into was they asked me if I’d be a volunteer for these student exams
• and things and I said “yeah” so all the questions were like “oh what jobs have you done,” er about your relationships and things and er but
• nobody actually sat down and had a talk and showed some interest in you as a person you were just there basically [pause] um labelled and you
• know there was there was [pause] but umm [pause] yeah . . .

This article is the 10th 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 articles 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.

Austin Z, Sutton J. Qualitative research: getting started. C an J Hosp Pharm . 2014;67(6):436–40.

Houle S. An introduction to the fundamentals of randomized controlled trials in pharmacy research. Can J Hosp Pharm . 2014; 68(1):28–32.

Charrois TL. Systematic reviews: What do you need to know to get started? Can J Hosp Pharm . 2014;68(2):144–8.

Competing interests: None declared.

Further Reading

Examples of qualitative research in pharmacy practice.

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Qualitative Research in General

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Social Constructivism

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