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• Volume 55, Issue 2
• Understanding qualitative research in health care
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Qualitative studies are often used to research phenomena that are difficult to quantify numerically. 1,2 These may include concepts, feelings, opinions, interpretations and meanings, or why people behave in a certain way. Although qualitative research is often described in opposition to quantitative research, the approaches are complementary, and many researchers use mixed methods in their projects, combining the strengths of both approaches. 2 Many comprehensive texts exist on qualitative research methodology including those with a focus on healthcare related research. 2-4 Here we give a brief introduction to the rationale, methods and quality assessment of qualitative research.

https://doi.org/10.1136/dtb.2017.2.0457

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Key issues in qualitative research

Qualitative research allows deeper understanding of the richness and complexity of social phenomena. Qualitative methods can provide evidence on health and illness and can be used in various ways: 3

To complement quantitative methods, or when quantitative methods are impractical (e.g. when the topic is sensitive, poses measurement problems or is concerned with process and/or interaction; the research population is very small; or for intensive understanding of an innovation before widespread introduction). 3

In the exploratory stages of an applied health research programme, when they may clarify the research question and generate hypotheses. 3 Study design is often described as flexible or ‘emergent’ and researchers may have to adapt a study through a process of ‘progressive focussing’ in response to important but unanticipated findings. 3

To assess a pre-specified hypothesis, as in quantitative research. 3

To study particular experiences in depth rather than population averages or generalisations, and explore experiences from different perspectives. 3 For example, assessment of patient satisfaction is complex and varies between cultures or settings, which can make it difficult to develop quantitative measurement instruments. 5

To involve potential users in development and implementation of interventions. 6

To interpret the findings of quantitative research. 3

For example, in one study, alongside a quantitative review on the efficacy of telephone counselling for informal carers of people with dementia, qualitative methods were used to explore carers' experiences of receiving telephone counselling and counsellors' experiences of conducting telephone counselling. 7 Analysis of quantitative and qualitative results identified areas for improvement.

While the same ethical principles (autonomy, non-maleficence [doing no harm], beneficence and justice) apply equally to both quantitative and qualitative research, the application of these principles should take into account the nature of the research proposed. 3 The risks of serious physical harm arising from qualitative research are rarely as high as in quantitative medical studies. However, such research may cause psychological harm, damage to self-esteem and have an adverse impact on interpersonal relationships. Qualitative researchers should seek to minimise such risks. A ‘good’ interviewer builds rapport, encouraging trust and disclosure. In addition, the interviewer also needs to allow opportunities for the interviewee to withdraw or cease disclosure. 4

People, settings, processes, events or data are sampled in qualitative research in order to understand a particular problem, rather than to statistically represent a wider population. In contrast to quantitative methods, where many participants are sampled by randomisation, the small number of participants in qualitative research are often deliberately chosen for their ability to illuminate the research question (known as purposive sampling). 2 , 3 Such sampling may include the selection of outlier cases, cases with maximum variation or homogeneous cases.

Data collection

Methods of collecting data include observation, interviews and focus groups. 3  It is usual to write field notes, but methods can also include video or audio recordings.

Observation

Observation allows researchers to notice events and relationships in a ‘natural’ setting, which may produce insights about which the participants may not be aware. Observation (with varying levels of participation by the researcher in the events being observed) may require a prolonged time period but allows the observer to check their record against an informant's description and note discrepancies. 3

One-to-one interviews are used when the researcher wants to find out something that cannot be directly observed (e.g. how consumers evaluate health services, what understanding and attitudes underlie particular kinds of health behaviour). 3

Good questions in qualitative interviews should be open-ended, neutral, sensitive and clear to the interviewee. 8 , 9 It is usually best to start with questions that the interviewee can answer easily and then proceed to more difficult or sensitive topics. 8 Open questions allow the respondent to answer in their own words and interviews where there is a good rapport may be more likely to create a context in which respondents are prepared to discuss sensitive topics and penetrate beyond a superficial level. 2 , 3 Researchers should monitor their interviewing technique, critically appraise recordings of their interviews and ask others for their comments, noting in particular whether leading questions are being asked, whether cues are picked up or ignored, and whether interviewees are given enough time to explain what they mean. 8

Interviews can be tightly structured or more flexible: 3

A structured (standardised) interview is one in which the wording and order of all questions are exactly the same for every respondent. This aims to ensure that any differences between respondents are not attributable to differences in the questionnaire or research procedures.

A semi-structured interview covers topics on the researcher's agenda, but the phrasing and ordering of questions are tailored to the vocabulary and understanding of respondents, rather than imposing a uniform set of questions, which may be interpreted differently by respondents.

A ‘depth’ or ‘long’ interview, involves no specific set of questions. The participant's perspective on the phenomenon of interest should unfold as the participant and not the researcher views it. 3 The flexibility of such interviews may uncover new unanticipated areas or ideas.

Focus groups

Focus groups (or group interviews) are informal discussions in which participants focus collectively on a topic or issue, usually presented to them (either verbally or in written form) as a vignette to discuss. 3 , 10 Focus group participants (usually 6-8 people) may be existing clusters of people (e.g. family members, friends or work colleagues) or assembled specifically for the research. 10

The advantage of a focus group is the interaction of group participants with each other, as well as with the researcher/moderator. Such interaction is helpful to:

gain access to participants' own assumptions, meanings, vocabulary and thinking patterns;

identify concepts and practices central to the respondents, and to design subsequent questionnaires using respondents' own words or phrases, enhancing future participants' understanding of research questions;

observe how people interact to construct meanings attributed to health and illness, how opinions are formed, expressed, defended and sometimes modified in discussion and debate with others;

enable participants to have more control over the research agenda, which may generate unexpected insights into areas important to them; and

identify obstacles or objections that prevent or discourage individuals from healthy behaviours, and explore individuals' understanding of, and responses to, health-related media messages. 10

Data analysis

Whereas quantitative analysis seeks to reduce data, generating a series of statistics, qualitative analysis aims to represent data using detailed knowledge of cases. Qualitative research studies typically produce very large amounts of data, which are reduced and summarised into codes, concepts, categories, themes and theory. 3

There are many different approaches to analysis in qualitative research, including thematic analysis, framework analysis, grounded theory, interpretive phenomenological analysis, conversation analysis and discourse analysis. 2 , 3 , 11 , 12

Grounded theory derives theory from data using a constant comparative method. 2 , 3 , 11 , 12 Items in the raw data (e.g. interviews, field notes) are broken down, so that as many ideas and concepts as possible are identified and systematically coded, while at the same time comparing them with previous incidents. 2 , 3 Standardised rules are used for transcribing data to limit the risk of misinterpretation. Codes and categories can be based on the respondent's own words. 3 The data are simultaneously organised and reassembled, so that the researcher can identify relevant elements and relationships by cataloguing the substantive topics and attaching labels to concepts and themes that they see emerging from the material (rather than reflecting prior theoretical assumptions), developing core categories and ultimately explaining phenomena. 2 , 3 The analysis is iterative with the findings of preliminary analyses of data from the first phases of fieldwork informing subsequent work. 3

There should be careful documentation of all analytic decisions that lead to the creation of categories, forming an audit trail that provides evidence to support the integrity of the coding, categorisation and interpretive choices made throughout the qualitative data analysis process. 2

Researchers should also demonstrate continuous reflection on the fit between data and reality, by regarding all theoretical explanations, categories, hypotheses and questions about the data as being provisional until they are compared with the data. 3 They should give clear explanations of methods and demonstrate that they have considered alternative possible explanations for their data. 3

A study may be adapted through a process of iterative ‘progressive focussing’ in response to important unanticipated findings. 3 ‘Data saturation’ is a point at which no new themes or ideas arise from data analysis, and data collection can stop at that point.

Researchers' pre-existing assumptions are often challenged by qualitative research, as ideas are raised by respondents and new concepts and theories can develop that help to explain nuance and complexity. 13 Qualitative studies are not seeking statistical generalisability, but to provide insights with applicability to other settings and situations. It is helpful to have the qualitative researchers' description of what they have done and how it was done, so that readers can judge how transferable the findings are to other contexts. 14

Quality assessment

Qualitative methodologies are derived from many fields of social research with different philosophies and underlying assumptions. 3 There is, therefore, more than one correct way to conduct qualitative research, and there are debates and disagreements about qualitative methodology that can be confusing. 15

Quality assessment of qualitative research studies remains a contested area. 16–18 In addition, as qualitative researchers may have an impact on the data, they must show the efforts they undertook to prevent this from influencing the data. 7

Just as the quality of quantitative studies may be assessed using checklists, many checklists are available to help assess qualitative studies. 16 , 17 For example, the Critical Skills Appraisal Programme (CASP) has produced a checklist to aid evaluation of qualitative research (see Box). 19

CASP checklist 19

Screening questions:

Was there a clear statement of the aims of the research?

Is a qualitative methodology appropriate? Is it worth continuing? (Only continue if both these questions are answered ‘yes’).

Was the research design appropriate to address the aims of the research?

Was the recruitment strategy appropriate to the aims of the research?

Were the data collected in a way that addressed the research issue?

Has the relationship between researcher and participants been adequately considered?

Have ethical issues been taken into consideration?

Was the data analysis sufficiently rigorous?

Is there a clear statement of findings?

How valuable is the research?

A more detailed checklist (the COREQ) consists of 32 items in three domains: 20

The research team and reflexivity (covering items such as the researchers' sex, credentials, occupation, experience or training; the relationship with the participants; researchers' biases and assumptions).

The study design (e.g. the theoretical framework, sampling, how participants were approached, the setting, description of the sample, data collection and the audit trail)

Data analysis and reporting (e.g. the number of data coders and description of coding method, whether participant quotations were presented to illustrate the themes, whether data were consistent, and whether themes were clearly presented in the findings).

Comparison between qualitative and quantitative research

The table below summarises some key differences between qualitative and quantitative research.

• View inline

Comparison of quantitative and qualitative research 3

How can qualitative and quantitative research complement each other?

Qualitative research can complement quantitative approaches. Two examples are given below:

Survey research

Qualitative field work (e.g. using observations, interviews or focus groups) to achieve a better understanding of health problems; generation of questions and response options to capture the reality of participants' experiences; qualitative interviews to seek feedback on the perceived meanings and wording of proposed survey questions; quantitative analysis of survey responses from a large, randomly selected sample.

Intervention development and evaluation

Qualitative fieldwork to illuminate the complexity of a health problem, explore barriers and facilitators for change and explore suitable types and designs of treatment or intervention; qualitative methods to involve users in intervention design to ensure that it meets recipient needs and that it is engaging, feasible and sustainable; randomised controlled trial to assess the effectiveness of an intervention; qualitative study to explore how interventions work (and why they don't work) in the real world.

Qualitative research is a technical discipline that is important in providing valuable descriptions of complex phenomena. Qualitative studies differ from quantitative studies in that they often generate rather than test hypotheses; focus on processes, thoughts, feelings and experiences rather than outcomes; and assess small numbers of participants in depth rather than large sample sizes. Such research is designed to capture concepts that are hard to enumerate with quantitative research methods. Findings from qualitative research can enhance the design of other types of research and the implementation of health interventions. Data are often collected using observation, interviews or focus groups, usually recorded and transcribed, which allow the exploration of topics in the respondents' own words and understanding. Analysis of the information must be systematic and transparent; checklists exist to help assess the quality of qualitative studies. Qualitative methods can complement quantitative methods to add a further dimension to research, although there may be issues around the generalisability of results from one context to another. Evidence from qualitative studies can lead to a richer understanding of the complex reality of people's lives and their experience of illness and medical care.

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• Published: 13 December 2018

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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Plain English summary

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.

Peer Review reports

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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Acknowledgements

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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Rolfe, D.E., Ramsden, V.R., Banner, D. et al. Using qualitative Health Research methods to improve patient and public involvement and engagement in research. Res Involv Engagem 4 , 49 (2018). https://doi.org/10.1186/s40900-018-0129-8

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• Qualitative methods
• Qualitative health research
• Patient-oriented research
• Integrated knowledge translation
• Patient engagement
• Patient partners
• Patient and public involvement

Research Involvement and Engagement

ISSN: 2056-7529

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Qualitative Methods in Health Care Research

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• 1 School of Nursing and Midwifery, Royal College of Surgeons Ireland - Bahrain (RCSI Bahrain), Al Sayh Muharraq Governorate, Bahrain.
• 2 Department of Mental Health Nursing, Manipal College of Nursing Manipal, Manipal Academy of Higher Education, Manipal, Karnataka, India.
• 3 Department of OBG Nursing, Manipal College of Nursing Manipal, Manipal Academy of Higher Education, Manipal, Karnataka, India.
• 4 School of Nursing, MGH Institute of Health Professions, Boston, USA.
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• DOI: 10.4103/ijpvm.IJPVM_321_19

Healthcare research is a systematic inquiry intended to generate robust evidence about important issues in the fields of medicine and healthcare. Qualitative research has ample possibilities within the arena of healthcare research. This article aims to inform healthcare professionals regarding qualitative research, its significance, and applicability in the field of healthcare. A wide variety of phenomena that cannot be explained using the quantitative approach can be explored and conveyed using a qualitative method. The major types of qualitative research designs are narrative research, phenomenological research, grounded theory research, ethnographic research, historical research, and case study research. The greatest strength of the qualitative research approach lies in the richness and depth of the healthcare exploration and description it makes. In health research, these methods are considered as the most humanistic and person-centered way of discovering and uncovering thoughts and actions of human beings.

Keywords: Ethnography; grounded theory; qualitative research; research design.

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• P van Royen 2 ,
• 1 Lecturer in Medical Sociology, Department of Social Medicine, University of Bristol, Bristol BS8 2PR, UK
• 2 Professor of General Practice, Department of General Practice, University of Antwerp, Universiteitsplein 1, 2610 Antwerp, Belgium
• 3 Professor of Quality in Health Care, Clinical Governance Research & Development Unit, Department of General Practice & Primary Health Care, University of Leicester, Leicester LE5 4PW, UK
• Correspondence to:
 Dr C Pope, Lecturer in Medical Sociology, Department of Social Medicine, University of Bristol, Bristol BS8 2PR, UK;
 c.pope{at}bristol.ac.uk

There are no easy solutions to the problem of improving the quality of care. Research has shown how difficult it can be, but has failed to provide reliable and effective ways to change services and professional performance for the better. Much depends on the perspectives of users and the attitudes and behaviours of professionals in the context of their organisations and healthcare teams. Qualitative research offers a variety of methods for identifying what really matters to patients and carers, detecting obstacles to changing performance, and explaining why improvement does or does not occur. The use of such methods in future studies could lead to a better understanding of how to improve quality.

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“ I went to see Roy Griffiths (architect of the 1984 NHS reforms and supermarket chief executive) in his office at Sainsbury's and while I was talking to him his secretary handed him a piece of paper. He looked at it and said: `OK'. I asked him: `What do you mean OK?' and he said: `My organisation is OK today'. It turned out he had just six measures on that piece of paper and from those he could tell what the state of Sainsbury's health had been the day before; things like the amount of money taken yesterday, the freshness quotient—the amount of stuff on the shelves—the proportion of staff on duty and so on .” NHS regional manager quoted in Strong and Robinson. 1

The above quote illustrates a view of management in the retail sector that was seen in the UK in the 1980s as a role model for health services. The quality of health care could be assured if we could only develop good quantitative measures such as performance indicators, and thus identify problems, make changes, and improve health services. This vision has been tempered with the realisation that the issue of “quality” is more complicated and nebulous than this model of management implies, especially in the case of complex health systems and services. The assessment of quality of services can no longer be confined to simply monitoring such aspects as waiting time, but requires an understanding of the experience of waiting for care—for example, the nature of the clinical environment, the adequacy of communication by and with health professionals, the context and manner in which treatment is delivered, and whether services and care meet expectations. Moreover, it is increasingly recognised that views of quality depend on one's perspective: patients, providers, politicians, and the public may all have contested views of what constitutes high or poor quality care.

The concept of quality in health care is multidimensional and complex and some of the questions we want to ask about the quality of care or services may not be amenable to quantitative measurement. Qualitative research has come to the fore in health and social research by providing ways of answering these sorts of questions, 2, 3 both in the form of “stand alone” or independent research projects and as a complement to quantitative studies.

The use of qualitative methods in qualitative research involves the systematic collection, organisation, and analysis of textual material derived from talk or observation. It is rooted in the interpretive perspectives found in the humanities and social sciences that emphasise the importance of understanding, from the viewpoint of the people involved, how individuals and groups interpret, experience, and make sense of social phenomena. It is not possible here to elaborate on the origins and theoretical underpinnings of this distinctive approach to research, but it is important to be aware that qualitative research is informed by a quite different paradigm to that which governs quantitative clinical and biomedical research. The emphasis in qualitative research on understanding meanings and experiences makes it particularly useful for quality assessment and for unpacking some of the complex issues inherent to quality improvement. This paper explores some of the qualitative methods that can help to gather information about the delivery of good quality health care and explain variations in health care provision.

THE METHODS

Qualitative researchers study phenomena and events in their natural settings, often interpreting them in terms of the subjective meanings attached by the individual. Qualitative methods for collecting data include interviews, observation, and analysis of documents. Different methods may be appropriate to different situations and different research questions. In some cases a single method may be used while in others a combination of methods may be employed. In this paper we focus on interview based and observational methods as these are the most commonly used in quality assessment.

Interview based methods

Individual face to face interviews may be either semi-structured or in-depth. Semi-structured interviews are typically based on a flexible topic guide that provides a loose structure of open ended questions to explore experiences and attitudes. In-depth interviews provide an opportunity to obtain more detail about an issue or experience, and are especially useful for exploring experiences of care. Because this method elicits people's own views and accounts, it can have the additional benefit of uncovering issues or concerns that had not been anticipated or considered by the researchers. In order to ensure that really detailed information is gathered, interview methods require experienced researchers with the necessary sensitivity and ability to establish rapport with respondents, to use topic guides flexibly and follow up questions and responses.

Focus groups are similar in structure to face to face interviews but they use the interaction of a group of, typically, 6–8 people to generate data. This allows group members to talk to one another, argue and ask questions, and is especially useful for finding out about shared experiences. Focus groups have been successfully used with users and staff. One adaptation of this method is the “exploration group” in which different healthcare providers who have direct contact with a particular health problem review and discuss some material such as audio or video taped cases or interviews in order to develop an interpretative explanation. 4

Another variant is the “quality circle”. This convenes a small group of healthcare providers and patients who meet at regular times for a determined period to formulate hypotheses or action points to improve quality in health care. 5

Observation based methods

The systematic observation of organisational settings, team behaviour, and interactions is especially useful in studying quality issues as it allows researchers to uncover everyday behaviour rather than only relying on interview accounts. These methods are increasingly used in the study of organisation and delivery of care 6 and can be especially useful in uncovering what really happens in particular healthcare settings—for example, in the study of everyday work in labour wards 7 —and for formative evaluation of new services.

Narrative based medicine

Narrative based medicine is one of several patient centred approaches that can give the physician access to the lived experience of their patients. This is the context in which the physician interprets symptoms and signs and in which personal healthcare decisions are made. It can therefore be an approach to understanding how healthcare decisions are made.

Qualitative methods are designed to yield detailed and holistic views of the phenomena under study. The aim of qualitative research is not therefore to identify a statistically representative set of respondents or to produce numerical predictions. Qualitative research questions tend to be exploratory and not tied to formal hypothesis testing, so the sampling strategies used in qualitative research are purposive or theoretical rather than representative or probability based. 8 This means that respondents are sampled based on specific predetermined criteria in order to cover a range of constituencies—for example, different age, social class, and cultural backgrounds (see box 1). 9 To locate hard to reach individuals or groups, researchers can use “convenience” venues, informants, or social networks.

Box 1 Focus group study to obtain information directly from adolescent young women on their knowledge and expectations concerning contraceptive use and their attitude to healthcare

To obtain a range of views, a purposive direct sampling strategy was followed to organise the focus groups. Four secondary schools with different educational levels were selected because of the correlation with sexual behaviour of adolescents. In each school all 17 year old young women of one small 5th grade class were asked to participate. Each group comprised six or seven participants, with a total of 26. Differences in sexual experiences and social classes fostered lively interaction within the groups. The discussions were tape recorded, transcribed, and analysed by content analysis. Knowledge of the daily use and side effects of contraceptives was insufficient. The general practitioner was the most frequently consulted healthcare provider for the first pill prescription, but for a gynaecological examination they thought they had to visit a gynaecologist. Mothers and the peer group were important in teenagers' decision making and should be considered when communicating with adolescent young women.

The sample sizes for interview studies tend to be much smaller than those used in survey or more quantitative research; they may include 30–50 respondents, although this can vary with the research question asked. Similarly, observational studies may be based on a single case study, perhaps focusing on one organisational setting such as a clinic or ward.

Qualitative analyses attempt to preserve the textual form of the data gathered and to generate analytical categories and explanations. This may be done inductively—that is, obtained gradually from the data—or deductively—that is, with a theoretical framework as background (box 2), 10 either at the beginning or part way through the analysis as a way of approaching the data.

Box 2 Investigation of barriers to implementing guidelines for the management of depression in general practice 10

Information about how general practitioners (34 in the intervention group) managed patients with depression were obtained from review of records and assessment of outcome with a standard patient completed questionnaire. The guidelines were issued to the general practitioners and they were then interviewed individually to identify their personal barriers to acting on the recommendations. The interviews were semi-structured and were recorded and transcribed. Psychological theories of behaviour change were used as the framework for analysing the interviews. The transcripts were repeatedly studied independently by several researchers. An example of the barriers identified through use of a theoretical framework relates to the theory of self-efficacy. Some general practitioners did not feel able to ask about suicide risk because they lacked confidence in their ability to use an appropriate form of words. After the general practitioners had been given suggestions for phrases to use, the proportion of patients whose suicide risk had been assessed increased.

There are various software packages designed to assist with the organisation and retrieval of qualitative data. Among those most commonly used are QSR NUD*IST 11 and Atlas Ti. 12 Some of these packages enable sophisticated analysis, allowing the researcher to make theoretical links within the data set; others identify co-occurring codes and provide opportunities to annotate codes or portions of text. All of these processes are integral to qualitative data analysis, but whether software is used or not, the key point about the analysis is that it relies on systematic and rigorous searching of text for categories and themes. These categories and themes are collected together, compared, and re-analysed to develop hypotheses or theoretical explanations. When conducting this coding analysis the researcher gives consideration to the actual words used, the context, the internal consistency, the specificity of responses that is more based on own experiences of respondents, and the big ideas beneath all detailed information. 13 It is important in this process not to lose sight of the narrative and textual structure of qualitative data, and to pay attention to the context of items of data (box 3). While software packages can assist with this labour intensive process and offer great potential for managing large data sets, they are not a substitute for thorough knowledge or “immersion” in the data which enables the researcher to identify connections and patterns, to make systematic comparisons, and to develop interpretations.

Box 3 The coding process

As the researcher comes across an idea or phenomenon, a label is attached. A fragment from adolescent girls' focus groups 9 : “ I always talk to my mother because I can tell her everything. You can always get reliable information from your mother .” Considering the actual words used, possible labels for this fragment are: “communication”, “mother”, “reliable”, “information”.

When the idea or phenomenon reappears in the text, the label is once again attached. “ If it is really necessary, I will talk to my mother. But I don't like that, but .. ”

After reading again all codes and fragments, a better formulation of the code can be found; for this fragment, the label “information sources/mother” can be used.

Specificity: responses based on specific experiences are more important. “ I always talk to my mother . . .” is more specific than “ Girls of my class are used to talk to their mother .”

Codebooks consist of a set of codes that capture the key analytical constructs. Step by step you progress in the level of analysing: raw data ← description ← interpretation ← recommendation.

RELIABILITY AND VALIDITY

When it comes to judging the quality of qualitative research, qualitative methods are often seen as scoring highly in terms of internal validity. By documenting how people really behave in “natural” everyday situations and examining in detail what people mean when they describe their experiences, feelings, attitudes and behaviour, these methods are seen as providing an accurate representation of the phenomena studied. Reliability, which is a particular strength of quantitative research, cannot always be judged so easily within a qualitative study. The settings and groups studied within qualitative research may be unique to the particular context or time period, and it is unlikely that a study can be replicated in the way that a controlled experiment can. Sometimes it is possible to involve other researchers in the analytical process to code the data independently or to discuss emerging themes and categories to try to reach consensus about the interpretation of the data. It is important that a clear account of the data collection and analysis is provided to allow readers to judge the evidence and interpretations presented. This clear exposition is also essential for judging the transferability of findings to other settings or groups.

SOME EXAMPLES OF QUALITATIVE RESEARCH ABOUT THE QUALITY OF HEALTH CARE

Qualitative research has been used in a number of ways to look at the quality of health care. To illustrate how these methods can inform quality improvement, we focus on three areas where qualitative methods have made a contribution: (1) in identifying salient features of care to inform service delivery and organisation; (2) in exploring organisational and other obstacles to change, notably within the context of healthcare evaluation; and (3) by complementing other research approaches either in the preliminary development of measures or in explaining or implementing findings.

Identifying what really matters to patients and care providers

Interviews or focus group methods are especially helpful in assessing user views of services and healthcare provision and in revealing why some care is perceived as poor quality. One interview study looked at patients' perceptions of the reassurance provided by rheumatologists and found that the typical methods of imparting reassurance, often by minimising or downplaying the seriousness of the arthritic condition, were frequently misinterpreted by patients. This study showed that clinicians needed to be more aware of patients' own views and experience of health problems and to adapt their explanations and information giving to increase its salience for this group of patients. 14 Similarly, an Australian study 15 found that the quality of information and reassurance given to women receiving abnormal cervical smear test results was poor and recommended different ways of organising the service to meet women's information needs and to improve the quality of care.

Qualitative work can be helpful in identifying cultural and social factors that hinder or encourage service use. This information can be directly fed back to healthcare providers to help them improve service delivery (box 1). 9 In the UK, focus groups with women from ethnic minorities 16 identified administrative and language barriers which prevented these women from using cervical screening services.

Identifying obstacles to change

By establishing the reasons behind certain behaviours, qualitative research can help to identify barriers to practice change. Success will be more likely if the methods used to implement change are chosen to address the prevailing barriers. 17 Interview studies have been used to identify modifiable factors associated with prescribing by general practitioners 18 and to distinguish doctor and patient related factors that explain a high level of prescribing of antibiotics. 19 Sometimes qualitative research is helpful in understanding how organisations and teams within them work on a day to day basis. Observational research by Hughes and Griffiths 20 on rationing in cardiac care conferences and neurorehabilitation meetings showed how decisions differed between these two types of service. Making these decision rules explicit makes it possible to see how this process might be improved or adapted. Elsewhere, interviews with general practitioners were used in a randomised trial of the implementation of guidelines for the management of depression in general practice to tailor intervention strategies to the needs of practitioners. 10 The identified barriers to change included doctors' perceived ability to assess suicide risk and inform patients about taking their medication (box 2). Further research is needed to elucidate the most efficient methods for identifying barriers to change and to investigate theoretical frameworks that can be used to understand barriers.

The complex structures and behaviours of healthcare organisations are increasingly recognised as critical factors in determining the quality of care. 21 Qualitative methods offer a potential approach to assisting leaders of organisations to appreciate some of the local issues to be considered when introducing new ideas or transforming systems of care. However, more research is needed to investigate which qualitative methods could be most useful, and in what circumstances they should be used.

Another strength of qualitative research lies in its role within formative evaluation. Qualitative methods can provide insights to the process of policy implementation, identifying where and why this is successful, uncovering initial “teething problems”, and suggesting solutions. Qualitative methods have also been used to guide the design of a new “one stop” clinic for women with menstrual problems and to evaluate the service from the patient's perspective. 22

Complementing other research

Qualitative methods have long been used to inform more quantitative research approaches, notably assisting with research design and the development of outcome measures. They have been used in preliminary work for surveys to develop and test questionnaires—for example, the development of quantitative measures of patients' views should begin with an exploration of the views of samples of patients using qualitative methods (box 4). 23

Box 4 Development of a measure of patients' views of care across the primary/secondary interface 23

The aim was to develop a standard quantitative measure of the views of patients referred from primary to secondary care. In order to identify the issues of concern to patients, a purposeful sample of patients who had been referred to secondary care was identified. Six focus group meetings were held and five patients who could not travel to a meeting were interviewed individually. Two researchers independently studied the transcripts and developed coding schemes. Differences were resolved through discussion. Five main themes emerged from the data:

getting into care;

fitting in with staff and systems of care;

knowing what's going on (obtaining information);

continuity of care;

limbo (progress through the healthcare system).

Failures in the first four themes led patients to report feeling as though they were not making progress and had been left in a state of limbo.

They can also be used as part of the process of dissemination of research evidence, and may be especially helpful in making findings relevant to patients and care providers. Thus, although it can be difficult to incorporate the views of patients or carers, qualitative methods may sometimes be useful in informing recommendations and guidelines. 24, 25 The choice of method will depend on the topic and the evidence base, but patient or carer focus groups or interviews can be appropriate if the guideline is concerned with the interpersonal aspects of care, with very small subgroups of patients or carers, or if the available evidence is limited.

CONCLUSIONS

This paper has introduced some of the methods of qualitative research and outlined some ways in which they can contribute to research into quality improvement and management of change. Quality improvement is a major goal of the healthcare systems of most developed countries yet, despite almost two decades of research, effective approaches remain elusive. In order to understand better the human and organisational factors that influence the quality and safety of care, researchers should remember the potential role of qualitative methods. Qualitative research encompasses a range of methods that have successfully been used to explore issues of healthcare delivery from patient and provider perspectives. They can help both to illuminate different facets of “quality” and to inform quantitative approaches to researching health care.

Key messages

There are several methods for collecting data in qualitative research, including both interview based methods and observation based methods.

Sampling methods are theoretical or purposive, and analysis may be inductive or deductive.

These methods may be used to identify what really matters to patients and carers, and can also be used to explain the obstacles to improvement and why improvement does or does not occur.

Qualitative methods could make an important contribution to understanding how to improve the quality of health care.

BIBLIOGRAPHY

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Gantley M, Harding G, Kumar S, Tissier J. An introduction to qualitative methods for health professionals . Master Classes in Primary Care Research No 1 (editors Carter Y, Shaw S, Thomas C). London: Royal College of General Practitioners, 1999.

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