CARE V Conference Series

Qualitative Research Ethics: Enhancing Evidence-Based Practice in Physical Therapy

Anne Townsend, Susan M. Cox, Linda C. Li

Background. Increasing challenges to health care systems and the prominence of patient-centered care and evidence-based practice have fostered the application of qualitative approaches in health care settings, prompting discussions of associated ethical issues in a range of disciplines. Objectives. The purposes of this work were to identify and describe the application and value of qualitative health research for physical therapy and to identify ethical considerations in a qualitative research study.

Design. This was a qualitative interview study with telephone follow-ups. Methods. Forty-six participants were interviewed about their early experiences
with rheumatoid arthritis. They also were asked what motivated them to volunteer for the study. To inform the discussion of ethics in qualitative health research, this study drew on the in-depth interviews, took a descriptive approach to the data, and applied the traditional ethical principles of autonomy, justice, and benecence to the study process.

A. Townsend, PhD, is Research Associate, The W. Maurice Young Centre for Applied Ethics, University of British Columbia, 235-6356 Agricultural Rd, Klinck Building, Vancouver, British Columbia, Canada V6T 1Z2, and Afliate Researcher, Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada. Address all correspondence to Dr Townsend at: atownsen@interchange.ubc.ca. S.M. Cox, PhD, is Assistant Professor, The W. Maurice Young Centre for Applied Ethics, University of British Columbia. L.C. Li, PT, PhD, is Assistant Professor and Harold Robinson/ Arthritis Society Chair in Arthritic Diseases, Department of Physical Therapy, University of British Columbia, and Research Scientist, Arthritis Research Centre of Canada, Vancouver, British Columbia, Canada. [Townsend A, Cox SM, Li LC. Qualitative research ethics: enhancing evidence-based practice in physical therapy. Phys Ther. 2010;90:615 628.] 2010 American Physical Therapy Association

Results. Ethical issues emerged in this qualitative health research study that were
both similar to and different from those that exist in a positivist paradigm (eg, clinical research). With exibility and latitude, the traditional principle approach can be applied usefully to qualitative health research.

Conclusions. These ndings build on previous research and discussion in physical therapy and other disciplines that urge a exible approach to qualitative research ethics and recognize that ethics are embedded in an unfolding research process involving the role of the subjective researcher and an active participant. We suggest reexivity as a way to recognize ethical moments throughout qualitative research and to help build methodological and ethical rigor in research relevant to physical therapist practice.

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Qualitative Research Ethics

ncreasing challenges to health care systems and the prominence of patient-centered care and evidencebased practice (EBP) have fostered the application of qualitative approaches in health and illness concepts,112 prompting discussions of associated ethical issues in a range of disciplines (eg, medicine,1 ethics,1315 social science,16 health care17,18). Although there is no unied denition or agreedupon way of doing qualitative research, it has been noted that the qualitative approach has salience for physical therapy, given its efforts toward EBP,19 a patient-centered approach, and the call to focus on the ethics of care.20 According to Jensen, Qualitative methods provide researchers with the tools to examine social settings and human behavior. The methods are well suited to studying the complex, multidimensional environments present in physical therapy practice and education.21(p492) This article contributes to the discussion on the utility and value of qualitative health research and associated ethical concerns. Drawing on a qualitative interview study, we apply the traditional ethical principles of autonomy, justice, and benecence22 to the qualitative health research process and outline: (1) the development of medical research and governance; (2) the application and value of qualitative health research; (3) research strategies in a qualitative health research study; and (4) emerging ethical consider-

ations in the qualitative research process. In our discussion, we suggest the process of reexivity as a way to foster ethical and methodological rigor in applied qualitative health research and, ultimately, to offer enhanced care. The concept of reexivity has been used in a variety of ways in a range of disciplines; for the purposes of this article, it is a researcher self-awareness that frames actions and interactions during the research process. Being reexive engenders attending to participant priorities, respecting participant experiences in the context of their daily lives, and building relationships based on mutual respect and shared information in the health research process.

ment. Regulatory safeguards and guidelines were declared in the Nuremberg code (1949),27 the World Medical Association Declaration of Helsinki (1964; last revised in 2008)28 and the Belmont Report (1979).29 Increased federal accountability for human subjects research is further illustrated in updated ethics guidelines, such as the Council for International Organizations of Medical Sciences World Health Organizations International Ethical Guidelines for Biomedical Research Involving Human Subjects (1993; updated 2002),30 the Canadian Tri-Council Policy Statement (1998; amendments in 2000, 2002, and 2005),31 and the Statement of Ethical Practice for the British Sociological Association (2002; appendix updated 2004).32 In the United States, the Ofce for Human Research Protections details research regulation, offers education (is currently running a campaign to inform the general public about research participation), and recently updated its document on compliance oversight.33 Historically, guidelines for human subject protection are anchored in the biomedical model,1 with clinical trials acting as the benchmark of research governance.34 Broadly, the biomedical model rests in the positivist paradigm, which typically (although not always) generates quantitative data. The positivist approach is associated with a hypothetico-deductive model of sciencea systematic process in which observable facts are collected, variables are scrutinized, hypotheses are tested, reliability and validity are measured, and statistical generalizations are made (Fig. 1). The researcher objectively observes the data and collects the results. In contrast, qualitative research is associated with the interpretivist paradigm, an inductive approach to studying naturally occurring phenomena and understanding multiple
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Background: Medical Research and Governance

Health research is inherently a moral enterprise, characterized by asymmetrical relationships of trust and power, underpinned by ethical tensions between means (eg, potential for risks posed to volunteers in the research process) and ends (the quest for knowledge for the greater good).23 Guiding moral principles in research ethics consider the overall potential benets accrued against the possible harms to volunteers, and formalized structures of research governance exist to ensure that research is conducted in an ethical manner and that researchers act with integrity.24 The advancement of medical knowledge and associated research scandals involving abuses of power by health care professionals and gross harm to research participants25 spawned the development of systematic ethical guidance in medical research.26 The protective measures introduced rested on basic and shared moral principles. Research volunteers were to be fully informed of the nature of the research, decide freely about participation, and be assured that their participation would not affect their health care and treat-

Available With This Article at ptjournal.apta.org

Discussion Podcast: Participants to be determined. Audio Abstracts Podcast This article was published ahead of print on March 4, 2010, at ptjournal.apta.org.

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Figure 1.
Model illustrating examples of positivist and interpretivist approaches to research. Based on: Shepard KF, Jensen GM, School BJ, et al. Alternative approaches to research in physical therapy: positivism and phenomenology. Phys Ther. 1993:73:88 97.

realities; it applies different criteria to validity and reliability, and an assessment is made of how transferable the ndings are to different settings (Fig. 1). Qualitative researchers attempt to interpret the meaning people attach to their experiences and investigate the complexity, context, and process of lived experience. Generally, ethnography, although its denition is debated, is a favored interpretive approach that typically involves participant observation with interviews. Often researchers are unable to immerse themselves in the lives of those beApril 2010

ing studied, but conduct a series of interviews (often termed ethnographic) in an attempt to gain an in-depth understanding of individual experience. The researcher coconstructs the data generated, acting as the research instrument. Samples can range from single cases to largescale studies, depending on the research aim.35 Quantitative and qualitative approaches typically ask different questions and gain different types of evidence, all of which are needed to fully inform an evidence base.20 It should be noted that positivist and interpretivist approaches

are not always tied to particular methods and that researchers often are involved in mixed-methods initiatives and make decisions about research design based on pragmatic factors rather than philosophical preferences.36 Although qualitative research is increasingly addressed in research compliance guidelines for the protection of human subjects,31 the principle-based approach to conducting ethical research is commonly cited as the most appropriate framework for ensuring human subNumber 4 Physical Therapy f 617

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Qualitative Research Ethics ject protection: Respect for autonomy, benecence and nonmalecence has become a key component of any discussion of the researcher-researched relationship, which, it is argued, will ensure that the end objective in qualitative research does nor override the rights, health, well-being and care of research participants.37(pp11511152) However, evidence indicates that medical research ethics committees encounter difculties when assessing qualitative research, which subsequently has hampered research of sensitive topics.1,38 studies contribute knowledge to an evidence base that cannot be generated by a quantitative approach.41 Overall, qualitative research can offer useful stand-alone projects, evidence alongside quantitative methods, or a stage of a mixed methods project and can contribute to a body of work for synthesis.42 Here we describe an in-depth interview study and then focus on ethical issues that arose throughout the study process. We use the traditional principles of autonomy, justice, and benecence/nonmalecence as an organizing framework22,34 and comment on their utility in qualitative research. focusing on the qualitative research context.44 Recruitment We recruited individuals who had been diagnosed with RA in the 12 months prior to their recruitment and who were English speaking and lived in British Columbia, Canada. In our pilot study,45 recruitment packages were mailed to 163 family physicians and 4 rheumatologists for forwarding to patients who fullled the inclusion criteria. Out of a target of 10 participants, we recruited 8 participants (4 recruited through family physicians and 4 recruited through rheumatologists). Follow-up contact was attempted with the health care professionals, but no further participants were recruited. This paucity of participants reects the low incidence of new cases of RA (33 per 1,000 in North America), but also reveals problems, common to both qualitative and quantitative research,46,47 with recruiting participants through health care professionals.48 50 In most cases, we were unable to speak to family physicians to discuss recruitment but spoke to assistants, several of whom reported physicians did not take part in this type of research. The pilot recruitment strategy was considered adequate for the pilot phase (we gained in-depth data that warranted further investigation) but insufcient for the main study, in which we wanted to gain a range of experiences based on diverse social and illness factors in a range of settings. We also wanted to identify similarities and differences among individuals. For the main study, we recruited participants through patient organization Web sites, newsletters, and information leaets at local arthritis centers, as well as 4 rheumatologists ofces. We gained 38 participants (37 female and 1 male). Although we originally had sought 36 participants, we extended recruitment (and
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The Application and Value of Qualitative Health Research

The increasing relevance of qualitative research to health care practice has been documented.3,35 Typically designed to reveal a range of experiences and identify commonalities and differences between groups or individuals, methodological approaches include grounded theory, phenomenology, and narrative. Investigation reveals how outcomes are achieved and situations unfold and highlights the interactions and minutiae of daily life. Qualitative approaches have increased our understanding of medication use (eg, revealing patient ambivalence and the shortcomings of the compliance model9) and highlighted contradictions and tensions in practicing selfmanagement not identied by a variable-based approach.8 Qualitative studies have offered explanations for unexpected or contradictory ndings revealed by quantitative studies and shortcomings of a rational-choice decision-making model in seeking care and have identied unintended consequences of service developments.35 In physical therapy, grounded theory studies20,39,40 have revealed the complex ways in which health care practitioner experts make decisions. Such

Research Strategies in a Qualitative Health Research Study: The Early Rheumatoid Arthritis HelpSeeking Experience (ERAHSE) Project
Our research aim was to gain an indepth understanding of the meanings people applied to early symptoms of rheumatoid arthritis (RA) and their impact and the actions individuals took in the context of their daily lives. We wanted to investigate the lived experience of illness.4 We draw on interview extracts and detailed eld notes (from both the pilot study and the main study) to explore and illustrate the links between method and ethics. Because this is a discussion article that draws on data, we use basic description,43 remaining close to the data, and do not make highly conceptual or abstract statements. As Sandelowski noted, qualitative description is a valuable method, but often neglected as a stand-alone approach to presenting qualitative data.43 We compare the quantitative and qualitative paradigms (Fig. 1) and identify the ways in which traditional ethical principles can be applied (Fig. 2),

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Figure 2.
Model illustrating theoretical approaches in research and associated ethical issues.

adapted information leaets) in the hope of gaining more male participants; however, this attempt was unsuccessful, and recruitment ended for practical reasons. Although in the main study we provided more opportunity to selfselect via patient organizations and arthritis centers, we encountered recruitment problems. Despite requiring an equal number of male and female participants to gain insight into gendered experiences, recruiting only 1 male participant limited the ndings. Also, the majority of participants who contacted us did so
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via the recruitment leaets, not their health care professionals. Participants indicated (in their initial contact and during the interview) that a major reason for taking part in the study was the hope that they would gain treatment or care benets or that they could share their story to assist others. This participant selfselection may have biased the sample. It also was possible that those volunteers with few treatment or illness problems saw no reason to participate and that those who were among the most disadvantaged, with multiple conditions, may not have had access to the recruitment infor-

mation or could have had other priorities. This possibility does not dilute the signicance of the ndings, but it does highlight that caution and clarity are needed when making data-driven claims, for instance, about transferability of the ndings to other settings. Interviews The guide was organized around 3 broad, overlapping areas: (1) early symptoms, including impact and illness actions; (2) interactions with health care professionals and gaining a diagnosis; and (3) post-diagnosis experiences. We also asked individNumber 4 Physical Therapy f 619

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Qualitative Research Ethics Box 1.

Autonomy
Quote 1: I heard about this study from my doctor. He told me about it when I went to see him. He showed me the information and said I should ring you. He said he suggested me because I was more alert than the others. (Iris) Quote 2: My doctor told me about the study. He said I should be able to give you all sorts of information; he knows I do my own research, and thought I would be good in the study. (Ian) Quote 3: My doctor told me about it [the study]. Well, we have been trying all these things, and nothing works. He thought it might help. He thought I might learn something, so I got in touch with you. Anything would help. (Lynn)

uals their motivations for participating in the research. Informed consent was obtained, and all participants agreed to a follow-up telephone interview for elaboration and clarication and for the interviews to be audio-recorded. Detailed eld notes were taken. The interviews were transcribed verbatim, and identifying information was removed from the transcripts. Pseudonyms, chosen by the participants, have been used for all interview data. The structure, content, and form of the guide were designed to elicit open and detailed responses from the study participants, giving them opportunities to discuss their priorities. To avoid, as far as possible, researcher bias and medical model preconceived ideas about treatments and decision making, consumer collaborators (volunteers on the research team with a diagnosis of arthritis) contributed to the interview guide, offering their perspective on what topics should be included, the type of language or phrasing to be used, and the order of the questions asked. Thus, the language was anchored in the everyday world rather than in a medical, therapeutic, or theoretical paradigm. The interview was designed to help build rapport (mutual trust and emotional afnity) and aid validity (gain an in-depth account as close as possible to participants experiences). Practical issues included arranging the interview for the convenience of the participant in terms of venue, timing, and comfort (eg, stretch breaks were offered).

Knowledge Translation We dene knowledge translation as an exchange of knowledge and perspective among an interdisciplinary team (including practitioners and consumers), as well as strategies for dissemination to a range of stakeholders and decision-makers in applied settings. We also include the transfer of information between the research team and participants. Communication strategies were built into the research design to facilitate team discussions and negotiate different perspectives and their application in answering the research question. Patient groups and health practitioners contributed key perspectives to the interview guide and dissemination process, which was designed to offer a range of relevant data formats and outlets encouraging best use of the collective ndings (peer-reviewed publications; specialized and plain language/information documents, conferences, roundtables, workshops, education initiatives, and updates and results regularly published on arthritis Web sites). Dissemination activities continue to be aimed at different stakeholders to build a bank of knowledge leading to actionable research/ action. Regular (quarterly) progress reports were sent out to all participants and the research team, updating them on all dissemination activities. The analysis to date has informed an interactive educational initiative called the Animated Self-serve Webbased Research Tool (ANSWER),

which is near completion, to enhance the patient experience, underpinned by a shared decision-making approach and recognition of the role of partnership in health care relationships. This initiative operationalizes the concepts of integrated knowledge translation and end-of-project knowledge translation.51 The ndings also have led to a longitudinal help-seeking study in another health care setting (the United States) and a Canada-wide survey to suggest hypotheses about help-seeking to add to the knowledge base.

Emerging Ethical Considerations in the Qualitative Research Process

We apply the concepts of autonomy, justice, and benecence/nonmalecence to discuss ethical concerns that emerged in our study. We use this principle-based approach because it typically is used as a framework in assessing human protection in biomedical research. However, it increasingly is regarded as unsuitable in assessing ethical issues that arise in a qualitative paradigm1 (Fig. 2). Some claim it is insufcient and neglects the context of research,37 whereas others defend its utility if the principles are used exibly and context is addressed.52 Autonomy Autonomy has been dened as the capacity to think, decide, and act on the basis of a freely made decision.52 Beauchamp and Childress22 identied 2 fundamental components of
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Qualitative Research Ethics autonomy: (1) liberty (independence from controlling inuences) and (2) agency (capacity for intentional action). Hewitt stated, In the context of research, informed consent is an explicit agreement by participants to participate in the research after receiving and comprehending information regarding the nature of the research. Such consent is given without threat or inducement and requires that participants have the mental capacity to give consent and voluntariness37(p1152) From a qualitative perspective, informed consent typically is considered an ongoing process,15 of which recruitment is a part. In our pilot study, participants were recruited through the ofces of their health care professionals, provoking potential ethical concerns regarding decision making and research participation. Our study was designed to ensure, as far as possible, that health care professionals had no personal contact with patients and that participation remained condential. Communications between the researcher and health care professionals were limited to mailing recruitment documents and associated general followups and inquiries. Recruitment documents were to be mailed to relevant patients from health care professionals ofces. However, in the pilot study, several participants reported interpersonal contact with their physician regarding participation (Box 1, quotes 1, 2, and 3). It has been noted that potential issues of inducement and consent emerge in the health care setting if a study participant is recruited through his or her physician.49 Issues of vulnerability and power may inuence decisions to participate, and being recruited by an individuals health care professional may pose obstacles to the process of free and informed consent. Typically, participants in our pilot study described their physicians as pivotal resources and, in some cases, as allies as they faced early-stage RA and accessed a range of medical services and information at a particularly vulnerable time in their illness trajectory. This relationship has a potentially coercive inuence on study participation. Study information from a trusted health care professional (particularly when gained in the consultation) may put implicit pressure on the patient to participate. It would be paternalistic to assume that the patient feels obliged or coerced into volunteering, but safeguards are needed to ensure the decision-making process to take part in health research is fully informed and unencumbered.15 Also, if physicians select patients beyond the inclusion criteria, they may deny access to others by declining to pass on study information, perhaps for paternalistic reasons to protect patients from an assumed burden of participating or for deeming that the research and patient are not well matched. Any interpersonal communication between patient and health professional regarding participation raises potential ethical concerns. Although patients may not necessarily be perceived as forming a vulnerable group, in our study, we found that individuals moved through vulnerable moments in their illness trajectory, and this vulnerability may have implications for how to recruit patients for research while offering them every opportunity to volunteer without being coercive in subtle ways. Throughout this process a reexive self-awareness when interacting with potential patient participants may assist those involved in recruitment to navigate a path between being overly paternalistic and practicing a subtle or nuanced coercion. Respect for autonomy encompasses an acknowledgment of agency and
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respect for the participants priorities, experiences, and motivations. An interview situation may leave the participant vulnerable to an implicit agenda of the researcher, who attempts to balance listening to detailed accounts, against the aims of the research and practical considerations such as time. There is the potential to mute the participant by categorizing some aspects of the conversation as going off topic and keeping to an agenda of topics to be covered. Considering many of the participants expressed they had taken part in the study to share their experiences, with several commenting I wanted to tell my story or I have waited a long time for this and with others coming to the interview with logs of their experiences, this is of particular signicance. Built into the topic guide were opportunities for participants to ask questions and give feedback about the interview, as well as introduce or elaborate on their own priorities. When applying an ethics lens to the interview, the strategic process of active listening becomes suffused with ethical moments. Negotiating the requirements of the research aim and the autonomy of the participant in the reality of the interview situation brings to the surface the at odds relationship of researcher and researched, which often is muted by descriptions of rapport building. This process illustrates the ongoing ethical moments that researchers face and the need for a reexive approach; that is, the researcher reects on the details of the research process and her or his role and interactions with participants and takes actions accordingly. Participants are vulnerable to being misrepresented. Because the researcher co-constructs the interview with the participant and analyzes and interprets the talk, the potential to misrepresent the individual and associated groups is always present.
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Qualitative Research Ethics Box 2.

Justice
Quote 1: He [family physician] told me there was a 1-year waiting list, so I said, Well, put me on that list, and I want to see somebody about it. I just didnt like the idea . . . to think my ngers could be so swollen, I cant bend them for a whole year. And then he gave me Celebrex,a so I went home. Thats when I e-mailed you. I was so frustrated that I went on the Internet again. It upset me . . . . I was thinking . . . rheumatoid arthritis because of inammation . . . even though my doctor did not [think that]. I read [that] on the Internet, anyway, and I e-mailed you. I wanted to talk to somebody. I wanted somebody to dump it on. (Nicolette) Quote 2: As soon as I read it [study information leaet], I thought there is somebody out there thats listening and going to be proactive and maybe help anybody else thats going through this. That is my only concern. People have to get into a rheumatologist early; you cant wait 8 months to see a rheumatologist. I thought this can help somebody down the road. (Maple) Quote 3: Because I was hoping that . . . I know Im not the only one . . . and that if we all have similar experiences, maybe things will change. I want to prevent somebody else going through this, and if you learn about it, you can do something. (Lee) Quote 4: I love research. I just love it and I think its so important, and its also a way of giving back some of the good things I have been given, right? And I always know . . . often its hard to nd people to do your research, right? And I just think . . . I am always researching, right? And for me, its [learning about the results] the natural outcome. If you ever publish anything, I would love to read anything you nd out. (Flossie)
a

G.D. Searle & Co, Div of Pzer, 235 E 42nd St, New York, NY 10017-5755.

In our study, interdisciplinary discussions highlighted different aspects of the transcripts as signicant, and this was a constant reminder of the need to be ethically vigilant, staying as true as possible to the reported experiences of the participant by, for example, drawing on the preinterview communications and eld notes to contextualize the interviews when interpreting the data. This process extends beyond being transparent when making data-driven claims and offering participants opportunities to comment on the emerging ndings; it is underpinned by a reexivity that involves a continual self-awareness of the researchers personal responses to the data. Justice Hewitt stated, Concepts of justice are explained in terms of what is deserved by each individual, and to what each individual is entitled, without partiality and with the aim of delivering equitable treatment37(p1153) Attending to this principle means offering participants a fair and equitable distribution of burdens and benets. Although other forms of justice, such as procedural justice, may be applicable here, it is beyond the
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scope of this article to explore the range of ways justice may be conceptualized and utilized in discussions of ethical aspects of the qualitative paradigm. Many of the volunteers who made contact conveyed how they hoped to benet in some way from study participation. Some hoped for information to help them manage their symptoms or for advice about a medical system that they found difcult to navigate (Box 2, quote 1). We offered a resource sheet to all participants who contacted us, with details of Web sites and patient- and arthritis-related organizations that offered advice and information. Some participants reported receiving the resource sheet was a benet of taking part in the study. Some participants described the opportunity to share their experiences as a benet and stated that taking part in the study helped them face and manage a new diagnosis of a debilitating, painful chronic illness. In such circumstances, being denied access to research can be perceived as a justice issue, for example, when a gatekeeper (eg, a health care pro-

fessional) offers study information to some patients for reasons beyond the formal inclusion criteria, denying others the opportunity for potential benets. Patients may interpret being denied access to research as being denied a voice, which may be particularly signicant for those who feel they are not being heard and that their experiences were invalidated in the medical consultation. The context in which individuals volunteer to participate in health research has implications for the ways in which researchers communicate nonaccess to potential participants who may not fulll the study criteria and who may see subsequent nonparticipation as being denied a form of care. The most disadvantaged individuals may not have access to research participation for a number of reasons; they may be preoccupied with negotiating multiple conditions (social, medical, and personal).53 Some of our participants volunteered but did not take part due to a reported inability to negotiate their illness, daily life activities, and participation. Others may not have access to a gatekeeping professional (who may or
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Qualitative Research Ethics may not provide them with study information); they may live in remote communities or may not have access to recruitment materials from the Internet or patient organizations. Giving participants the opportunity to express their experiences is a justice issue because the interview contributes to our understanding of human experience. Particular meanings, processes, and complexities might remain hidden or misunderstood if research does not generate in-depth knowledge of a range of experiences under investigation. Reexive construction of an interview schedule or topic guide means researchers being aware of the potential to impose their perspectives in subtle ways on the interview, through their use of language and choice of content and providing spaces for participants to prioritize their concerns (in keeping with the researchs broad aims). Analysis and interpretation of interviews also are justice issues if a qualitative study designed to explore the complex messiness of the lived experience of illness is explained in terms of variables and cause and effect more suitable to the positivist paradigm. It also is important to apply theory to qualitative accounts in order to respect the experiences of individual accounts, while recognizing the broader context in which personal experiences take place, and to assess the feasibility of transferring the ndings to other settings. Careful researcher attention to the complexity, multidimensionality, and nuances of context and to the relevance of theory work to guard against a distortion of ndings, which may stigmatize groups, while neglecting fundamental social problems. Dissemination of the qualitative ndings also can be framed as a justice concern if participants give their time and share their experiences (which may be burdensome), with
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the understanding that they are contributing to a knowledge base to improve practice (which they may perceive as a benet). Participants in our study hoped to contribute to medical knowledge and improve patient experience of illness, treatment, and care; they conveyed helping others as a benet of taking part in the research, even if they felt they personally would not benet directly from research participation (Box 2, quotes 2 and 3). Despite increasing applicability and visibility, qualitative research still is neglected in some prominent medical journals and can be seen as anecdotal, or criticized on the basis of quantitative measures of reliability, validity, and generalizability.54 Efforts need to be made to publish qualitative research widely and make it accessible to different communities and disciplines. It is a waste of funding resources if ndings are not considered useful, worthy of publication, or disseminated to suitable stakeholders. Most participants in our study reported an interest in knowing the results of the project. Some identied how they perceived learning about the research outcomes as a benet of taking part (Box 2, quote 4). The accounts make explicit the responsibility the researcher has to participants55 to attempt to disseminate the research ndings and improve awareness of the results among all relevant stakeholders, including participants themselves. A reexive self-awareness about the details and implications of the research process invites researchers to be conscious of the justice issues from study inception to dissemination.

against risks22 and require that the researcher should do the patient no harm and should prevent harm and remove existing sources of harm.56 This concern highlights a potential conict for health researchers who fulll multiple roles, such as nurse research coordinators who advocate on behalf of the researcher (eg, principal investigator) and the patient, as well as the potential for misunderstanding when the patient places trust in the health researcher. Such situations raise ethical issues and have been identied as warranting a sort of trust wariness on behalf of the participant.15 Risks include overburdening individuals due to physician estimations of patient suitability beyond the inclusion criteria when not engaging fully with risks (or problems in assessing risks) that are associated with qualitative research rather than those in clinical trials. When obtaining consent for an interview study, it is never possible to accurately estimate risk, in terms of emotional upset, but we can anticipate its potential and take appropriate measures to prevent harm. In our study, respect for the priorities of the participant and the aims of the project were negotiated throughout the interview. We attempted to recognize when it was inappropriate to probe further, despite the interview guide, as the risk to a persons emotional well-being may outweigh the hope of gaining rich data. For example, seemingly straightforward questions (from the perspective of the interviewer) could elicit an emotional response (Box 3, quotes 1 and 2). Ongoing decisions about how the interview unfolds need to be made in vivo. Some participants talked in emotional terms when describing what prompted their rst appointment, as it symbolized a loss in their lives and the start of what was, in some cases, a debilitating illness and
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Benecence/ Nonmalecence
The principles of benecence and nonmalecence involve an obligation to provide benets for the patient and to balance such benets

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Benecence/Nonmalecence
Quote 1: Researcher: When you went to the doctor, what made you go then? Jean: Yes, I was having pains in my hands and in my ngers. These joint points . . . I did have a lot of stress at work. I wasnt feeling well. I did, I do have depression. I had one child [who] had problems of depression, too . . . [who] was seeing a couple of counselors and taking some anti-depressants medication . . . [who] did go into a hospital at one time. All of this, of course, was stressful. [My child] committed suicide . . . and from that time, I was diagnosed with depression because I was going to consider suicide myself. I made a bit of an attempt. It was not a good one. Quote 2: Researcher: You said your children were very helpful; how important is that? Sarah: Huge. Um [pause] in the beginning [voice faltering, sounds upset], before we really knew what was going on, I was overwhelmed. I couldnt hold a knife to cut cheese to make sandwiches, and in those days the kids were much younger, one would have a meat sandwich, and one would have chicken, one would have ham, one would have roast beef, one would have mustard, one would have mayonnaise, one would have, you know. . . . . I had it all organized. It was part of my morning ritual, and it was important to me to be able to do that.

an uncertain future. In another example, a seemingly innocuous question caused emotional upset for the participant, who was close to tears as she responded to a probe to gain further detail about family life and her children (Box 3, quote 2). This participant was able to continue in paid employment, but a routine task for her symbolized being a mother, and she conveyed suffering and loss beyond her functional debility. Participants may offer personal and sensitive information spontaneously, with no apparent upset, or they may become distressed unexpectedly (Box 3, quotes 1 and 2). The observation here is that aspects of risk are subtle and ongoing and emotional risk in an interview situation cannot be anticipated in advance, but the potential for it can be, and researchers need to attempt ethical listeninga blend of exibility, structure, sensitivity, and pragmatism. The resource sheet we provided also included counseling service details (a free service offered locally). There also is a risk of confusing the research interview with the therapeutic interview, so the participant may have an inaccurate estimation of risks and benets. One participant noted that she was so frustrated with
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the health care system that she wanted to dump on somebody (Box 2, quote 1). Another participant reported severe illness, debilitating symptoms, acute reactions to medication, and depression and anticipated that she would nd it helpful just to talk to someone. Although participants may gain benets from the interview, the potential for psychological distress during or after the interview should not be underestimated. Also, the line between building rapport in a research interview and offering a therapeutic interview encounter needs to be navigated with care. One participant related how, in a previous interview in a hospital setting, she had shared sensitive details and found it difcult to adjust to the sudden termination of the interview and being back out on the street. Another participant described discussing help-seeking and had later spent some time reecting on her previous actions and wondering whether she could have consulted her family physician earlier and prevented symptom deterioration. Participants also reported more practical burdens and inconvenience. Some conveyed negotiating participation with their medication regimens, appointments, daily life, and

symptoms (fatigue, pain, and discomfort). Others described the impact of the interview. One participant noted how she had been surprised by feeling physically tired on returning to work after her lunchtime interview and had not anticipated any negative impact, despite her employer advising of this possibility. It is difcult to assess these potential risks prior to an interview study, but this difculty underscores the emerging ethics in qualitative research and the need for a reexive approach, anticipating ethical moments and how to manage them throughout the process, as well as building measures into the study design that will minimize harm.

Discussion
We identied the value of qualitative health research57 and ethical issues that emerged in our in-depth interview study, applying the principlebased approach of autonomy, justice, and benecence/nonmalecence, which traditionally is associated with human subject protection in medical research, although increasingly criticized for its suitability to qualitative research. Our ndings mirrored ethical concerns that arise in quantitative research (eg, issues of coercion and recruitment through health care professionals). We also
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Qualitative Research Ethics identied ethical considerations in the research process (Fig. 2). There are fundamental differences between the positivist and interpretivist paradigms (Fig. 1) that are core to the different protections required for participants. The interpersonal researcherresearched relationship, which involves ongoing interactions, building mutual trust and respect, the active role of the participant and researcher in co-constructing the data generation, and the qualitative interpretation of the ndings, is in direct contrast to the ideal of the passive research participant and the arms-length scientic researcher who observes the phenomenon and collects the results. The unfolding nature of qualitative research and the intersubjectivity of researcher and researched shifts the notion of informed consent as a moment in time and the lynchpin of human protection to a process embedded with ethical moments58 inextricably linked to research design and methodology inviting reexivity throughout.59 Our ndings are limited to issues that arose in our interview study. We did not design the project to analyze ethical aspects of research, but have descriptively drawn on eld notes and interview extracts to illustrate ethical issues that emerged. We use the traditional principle-based approach as an exploratory exercise; we do not claim this framework is the most effective way of considering human subject protection. Applying the traditional approach to our qualitative study extends our knowledge of the utility and value of this approach in context and is a strength of this article. In line with our study, recruitment through gate-keeping has been seen as a practical obstacle to research in the primary care setting.48,50 Some authors have suggested that physicians may not be suitably familiar with qualitative research and its potential contribution to EBP,60,61 and
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other authors have identied how this lack of familiarity is paralleled in quantitative research.62 Other authors broach ethical aspects and ask whether family physicians should be encouraged to recruit patients by offering both reimbursements and payments46 and whether clinician recruitment of patients can be assumed to be coercive or whether this assumption is another form of paternalism.49 Delaney suggested that research should be prioritized and made directly relevant to the training and development of the nonacademic clinician.50 Because ethical issues can emerge throughout the research process and are not conned to particular stages, such as gaining informed consent, a reexive approach characterized by a thoughtful and ongoing self-awareness, attention to detail, and sensitivity to the individuals role in the research enterprise (eg, health care professional as research worker/recruiter) highlights relationship dynamics and enhances ethical oversight. Education and training that delineate the ethical differences between the quantitative and qualitative approaches seem key if health care professionals continue to play a role in research, including recruitment. Gate-keeping can diminish autonomy in both the positivist and interpretivist paradigms. Our ndings support other patient-participant reports of being recruited or inuenced by health care professionals to participate in research such as in clinical trials.15 Other authors have called for an investigation into barriers to recruitment of groups perceived as vulnerable because of misguided ethical guidelines.63 Such barriers raise questions that also were prompted in our study: When does an individuals illness status induce vulnerability, and what is the impact on decisions to participate and giving informed consent?38 Gatekeeping also can threaten the valid-

ity of the ndings; if the research fails to generate useful data (eg, due to a compromised sample),45 the subsequent wasted resources and production of research of limited validity are ethical issues.49 As in our study, other types of recruitment may be more appropriate to offer individuals the opportunity to exercise self-selection. This opportunity to exercise self-selection seems more in keeping with patient-centered care and collaborative research. However, sampling problems still arose in our study, illustrating that particular groups may be under-represented in research and their experiences neglected in EBP. In Canada, effective strategies need to be put in place to ensure groups and individuals have access to participation. These strategies may involve building trust and reaching remote communities and disadvantaged groups. Reecting our ndings, the interview has been described as a moral endeavor,64 and 3 types of potential ethical problems in qualitative interviews have been identied: (1) the design itself, (2) the research relationship, and (3) the process involved in interpreting qualitative data, and particularly the role of the researcher in co-constructing the ndings (results).65 Cox also noted the importance of ethical listening and being sensitive to when, and when not, to probe.66 Interviewer awareness of insensitive probing is indicative of a reexive approach; sometimes the offer of good data may need to be relinquished in favor of good ethics. The potential for psychological harm when sharing sensitive information in in-depth interviews and the impact of taking part have been considered,67 as well as the potential to distort ndings.68 Our ndings illustrated how interviews are an effective way of gaining experience of suffering69 and how ethics emerge in interpersonal relaNumber 4 Physical Therapy f 625

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Qualitative Research Ethics tionships in the interview situation.70 The researcher has a moral obligation to ensure that the research is worthwhile when people share time and suffering,71 and because there is scope to interpret and co-construct the realities that are then part of the knowledge base, acting reexively is crucial to ethical practice.37 Our experiences revealed that it was difcult to know when ethical issues would arise, or how nuanced (constructing the interview guide) or unique (psychological harms) they would be. Ethical issues emerged in the construction of the interview guide and the practical circumstances of the interview. Skillful researchers try to avoid imposing their own structures and assumptions upon interviewees view of the world.3 Careful recording of eld notes and analytic reection are required. Field notes serve as the written account of what the researcher sees, hears, experiences, and thinks and supplement the interview data. The interview is an ethical process, from the creation of the interview guide to the analysis of the accounts. This approach to ethics in research is informed by a process model of research ethics, whereby considerations of autonomy and respect for the perspectives and experiences of consumers are central from the early stages of study design.58 Regarding issues of knowledge translation, our interdisciplinary team faced challenges in discussions that highlighted our disciplinary assumptions and diverse perspectives. To facilitate mutual respect and shared decision making, measures were built into the research process to ensure inclusion of all perspectives; ongoing team communications were crucial in order to clarify meaning, recognize subtle ndings, and communicate complexity effectively. There also are ethical implications for knowledge dissemination and the development, application, and visibility of qualitative methods in health research. Although there has been seminal qualitative health research for more than 50 years (eg, about the patient-practitioner relationship72 and help-seeking73), disagreement exists about both the value and acceptance of the utility of the qualitative paradigm. Although previously ignored or viewed as a weak source of evidence, Sandelowski43 noted that qualitative research is now considered essential to the EBP goal of improving health care. Atkin54 described how patient accounts are still seen as meaningless and not regarded as evidence, but rather as anecdotal. Thus, despite the apparent shift beyond the oppositional quantitative and qualitative paradigms, opposition still characterizes many evaluative discussions in an interdisciplinary research context. Atkin noted that an emphasis on positivist-based priorities and quality appraisal may discourage the more reexive engagement that characterizes qualitative methods and asked: Is there a danger that by pressing for the inclusion of qualitative accounts in more applied research, often dominated by quantitative methods, we risk producing analysis that is descriptive, uncontextualised and little more than a token gesture, paying lip service to individual experience?54 This question illustrates the inextricable link between ethics and methodology: if lip service is paid to investigating the lived experience of illness in all its messiness, there is a danger that we will not do justice to participant accounts. and process, and (2) that the realities of doing everyday ethics highlight ethical moments and the need for a reexive stance at every level and stage of research. Reexivity involves the researcher always being aware of the role of self in the process, a sensitivity to the ethical concerns that may arise, and taking measures to prevent harm (eg, anticipating that participants may experience psychological distress). An ongoing awareness of the ethical moments that may arise throughout the research process and ones role in the process increases ethical rigor at all stages of research, such as when designing the study (offering counseling services or a resource sheet with useful and valid Web sites) and during the interview (how to listen sensitively and when and when not to probe). Ethical, rigorous, and useful qualitative research involves being accountable to research participants and echoes the ethical concerns in physical therapy. An ethos of patientcentered care and issues of empathy, autonomy, and respect are highlighted in our account of qualitative research from the studys inception to the dissemination of results. An ethical lens in qualitative health research brings particular challenges and insights to methodological concerns about recruitment procedures, the interview or other data-generation processes, and knowledge translation, and, ultimately, the usefulness of the ndings to bring benets to patients/ consumers (and health care professionals) and to enhance health care.
Dr Townsend conceptualized the article and wrote all drafts of the manuscript, conducted the majority of the interviews, led the analysis, and was the principal investigator during the pilot phase of the project. Dr Cox consulted on the ethical issues emerging from the project and data analysis and assisted with the writing of the manuscript by reading the manuscript, making comments, and clarifying content. Dr Li was the principal investigator of the ERAHSE Project. As the

Conclusion
We have identied: (1) that the traditional principle-based approach can be usefully applied to qualitative research ethics, if we use the concepts exibly and prioritize context

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senior author, she provided guidance on drafts and contributed to the preparation of the manuscript. The authors thank the participants, who shared their time and experiences, and the members of the ethics review board who reviewed the study protocol. Ethical approval was obtained from the University of British Columbia Behavioral Research Ethics Board and the Vancouver Health Research Institute. This article was developed from a paper given at the CARE V International Conference; April 2325, 2008; Oslo, Norway. This research was funded by the Canadian Institutes of Health Research (CIHR). Dr Cox was supported through a career award from the Michael Smith Foundation for Health Research during the early part of this research. Dr Li was supported by a CIHR New Investigator Award and an American College of Rheumatology Research and Education Foundation Health Professional New Investigator Award. This article was received December 4, 2008, and was accepted December 28, 2009. DOI: 10.2522/ptj.20080388 9 Townsend A, Hunt K, Wyke S. Managing multiple morbidity in mid-life: a qualitative study of attitudes to drug use. BMJ. 2003; 327:837. 10 Townsend A, Wyke S, Hunt K. Frequent consulting and multiple morbidity: a qualitative comparison of high and low consulters of GPs. Fam Pract. 2008;25: 168 175. 11 Corrigan M, Cupples ME, Smith SM, et al. The contribution of qualitative research in designing a complex intervention for secondary prevention of coronary heart disease in two different healthcare systems. BMC Health Serv Res. 2006;6:90. 12 Jack S. Utility of qualitative research ndings in evidence-based public health practice. Public Health Nurs. 2006;23:277 283. 13 Cox S, Townsend A, Preto N, et al. Ethical challenges and evolving practices in research on health research. Health Law Rev. 2009;17:3339. 14 Owen M, Emerson C, Kolpack P, et al. Informing governance through evidencebased research on REBs: challenges and opportunities. Health Law Rev. 2009;17: 40 46. 15 McDonald M, Townsend A, Cox S, et al. Trust in health research relationships: accounts of human subjects. J Empir Res Human Res Ethics. 2008;3:35 47. 16 Hammersly M. Taking Sides in Social Research. London, United Kingdom: Routledge; 2000. 17 Shaw I. Ethics in qualitative research and evaluation. J Soc Work. 2003;3:9 29. 18 Townsend A. A Canadian researchers perspective: the human subject experience. Paper presented at: CARE V International Conference; April 2325, 2008; Oslo, Norway. 19 Henley LD, Frank DM. Reporting ethical protections in physical therapy research. Phys Ther. 2006;86:499 509. 20 Purtillo RB. Thirty-First Mary McMillan Lecture: Time to harvest, a time to sow: ethics for a shifting landscape. Phys Ther. 2000;80:11121119. 21 Jensen GM. Qualitative methods in physical therapy research: a form of disciplined inquiry. Phys Ther. 1989;69:492500. 22 Beauchamp T, Childress J. Principles of Biomedical Ethics. 5th ed.Oxford, United Kingdom: Oxford University Press; 2001. 23 Orb A, Eisenhauer L, Wynaden D. Ethics in qualitative research. J Nurs Scholarsh. 2001;33:9396. 24 Emanuel E, Wendler D, Grady C. What makes clinical research ethical? J Am Med Assoc. 2000;283:27012711. 25 Reverby S, ed. Tuskagees Truths: Rethinking the Tuskagee Syphilis Study. Studies in Social Medicine Series. Chapel Hill, NC: The University of North Carolina Press; 2000. 26 Riessman C, Mattingly C. Introduction: toward a context-based ethics for social research in health. Health (London). 2005; 9:427 429. 27 Trials of War Criminals Before the Nuremberg Military Tribunals Under Control Council Law. Washington, DC: Government Printing Ofce; 1949;181 182. 28 World Medical Association. Declaration of Helsinki: ethical principles for medical research involving human subjects. Available at: http://www.wma.net/en/30publi cations/10policies/b3/index.html. Accessed October 2009. 29 US Department of Health Education and Welfare. The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. Washington, DC: The National Commission for the Protection of Human Subjects of Biomedical and Behavioural Research; 1979. 30 World Health Organization. International Ethical Guidelines for Biomedical Research Involving Human Subjects. Geneva, Switzerland: Council for International Organizations of Medical Sciences (CIOMS) in collaboration with the World Health Organization; 2002. 31 Canadian Institutes of Health Research. Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. Ottawa, Ontario, Canada: Natural Sciences and Engineering Research Council of Canada, Social Sciences and Humanities Research Council of Canada; 1998 (with 2000, 2002 and 2005 amendments). 32 Statement of Ethical Practice for the British Sociological Association; Belmont, Durham, United Kingdom: British Sociological Association; March 2002, appendix updated May 2004. 33 US Department of Health and Human Services, Ofce for Human Research Protections. Available at: http://www.hhs.gov/ ohrp/compliance. Accessed October 2009. 34 Gillon R. Medical ethics: four principles plus attention to scope. BMJ. 1994;309: 184 188. 35 Barbour R. The role of qualitative research in broadening the evidence base for clinical practice. J Eval Clin Pract. 2000;6: 155163. 36 Shepard KF, Jensen GM, Scholl BJ, et al. Alternative approaches to research in physical therapy: positivism and phenomenology. Phys Ther. 1993;73:88 97. 37 Hewitt J. Ethical components of researcher researched relationships in qualitative interviewing. Qual Health Res. 2007;17:1149 1159. 38 Moyle W. Unstructured interviews: challenges when participants have a major depressive illness. J Adv Nurs. 2002;39:266 273. 39 Edwards I, Jones M, Carr J, et al. Author response to invited commentary on clinical reasoning strategies in physical therapy. Phys Ther. 2004;84:334 335. 40 Resnick L, Jensen GM. Using clinical outcomes to explore the theory of expert practice in physical therapy. Phys Ther. 2003;83:1090 1106. 41 Edwards I, Jones M, Carr J, et al. Clinical reasoning strategies in physical therapy. Phys Ther. 2004;84:312330.

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42 Mayan MJ. Essentials of Qualitative Inquiry. Walnut Creek, CA: Left Coast Press Inc; 2009:137. 43 Sandelowski M. Whatever happened to qualitative description? Res Nurs Health. 2003;23:334 340. 44 Swisher LL. A retrospective analysis of ethics knowledge in physical therapy (1970 2000). Phys Ther. 2002;82:692706. 45 Townsend A, Cox SM, Adam P, Li LL. Recruitment in qualitative health research: methodological and ethical issues arising from a study on experiences of rheumatoid arthritis. Paper presented at: Annual Canadian Arthritis Network Scientic Conference Proceedings; November 30 December 2, 2006; Winnipeg, Manitoba, Canada. 46 Draper H, Wilson S, Flanagan S, Ives J. Offering payments, reimbursements and incentives to patients and family doctors to encourage participation in research. Fam Pract. 2009;26:231238. 47 Graffy J, Grant J, Boase S, et al. UK research staff perspectives on improving recruitment and retention to primary care research: nominal group exercise. 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