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Qualitative Research Ethics:Enhancing Evidence-Based Practice inPhysical TherapyAnne Townsend, Susan M. Cox, Linda C. Li

Background. Increasing challenges to health care systems and the prominence ofpatient-centered care and evidence-based practice have fostered the application of

qualitative approaches in health care settings, prompting discussions of associatedethical issues in a range of disciplines.

Objectives. The purposes of this work were to identify and describe the appli-cation and value of qualitative health research for physical therapy and to identifyethical 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 experienceswith rheumatoid arthritis. They also were asked what motivated them to volunteerfor the study. To inform the discussion of ethics in qualitative health research, thisstudy drew on the in-depth interviews, took a descriptive approach to the data, and

applied the traditional ethical principles of autonomy, justice, and beneficence to thestudy process.

Results. Ethical issues emerged in this qualitative health research study that wereboth similar to and different from those that exist in a positivist paradigm (eg, clinicalresearch). With flexibility and latitude, the traditional principle approach can beapplied usefully to qualitative health research.

Conclusions. These findings build on previous research and discussion in phys-ical therapy and other disciplines that urge a flexible approach to qualitative researchethics and recognize that ethics are embedded in an unfolding research processinvolving the role of the subjective researcher and an active participant. We suggest

reflexivity as a way to recognize ethical moments throughout qualitative research andto help build methodological and ethical rigor in research relevant to physicaltherapist practice.

A. Townsend, PhD, is Research As-sociate, The W. Maurice YoungCentre for Applied Ethics, Univer-sity of British Columbia, 235-6356

Agricultural Rd, Klinck Building,Vancouver, British Columbia, Can-ada V6T 1Z2, and Affiliate Re-searcher, Arthritis Research Centreof Canada, Vancouver, British Co-lumbia, Canada. Address all corre-spondence to Dr Townsend at:[email protected].

S.M. Cox, PhD, is Assistant Profes-sor, The W. Maurice Young Centrefor Applied Ethics, University ofBritish Columbia.

L.C. Li, PT, PhD, is Assistant Pro-fessor and Harold Robinson/

Arthritis Society Chair in ArthriticDiseases, Department of PhysicalTherapy, University of British Co-lumbia, and Research Scientist, Ar-thritis Research Centre of Canada,Vancouver, British Columbia,Canada.

[Townsend A, Cox SM, Li LC.Qualitative research ethics: en-hancing evidence-based practicein physical therapy. Phys Ther.2010;90:615628.]

2010 American Physical TherapyAssociation

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Increasing challenges to health caresystems and the prominence ofpatient-centered care and evidence-

based practice (EBP) have fostered theapplication of qualitative approaches

in health and illness concepts,112

prompting discussions of associatedethical issues in a range of disciplines(eg, medicine,1 ethics,1315 social sci-ence,16 health care17,18). Althoughthere is no unified definition or agreed-upon way of doing qualitative re-

search, it has been noted that the qual-itative approach has salience forphysical therapy, given its efforts to-ward EBP,19 a patient-centered ap-proach, and the call to focus on theethics of care.20 According to Jensen,

Qualitative methods provide re-searchers with the tools to examinesocial settings and human behavior.

The methods are well suited to study-ing the complex, multidimensional en-vironments present in physical ther-apy practice and education.21(p492)

This article contributes to the discus-sion on the utility and value of qual-itative health research and associ-ated ethical concerns. Drawing on

a qualitative interview study, we ap-ply the traditional ethical principlesof autonomy, justice, and benefi-cence22 to the qualitative health re-search process and outline: (1) thedevelopment of medical researchand governance; (2) the applicationand value of qualitative health re-search; (3) research strategies in a

qualitative health research study;and (4) emerging ethical consider-

ations in the qualitative research pro-cess. In our discussion, we suggestthe process ofreflexivity as a way to

foster ethical and methodologicalrigor in applied qualitative health re-

search and, ultimately, to offer en-hanced care. The concept of reflex-ivity has been used in a variety ofways in a range of disciplines; for thepurposes of this article, it is a re-searcher self-awareness that framesactions and interactions during the

research process. Being reflexive en-genders attending to participant pri-orities, respecting participant expe-riences in the context of their dailylives, and building relationshipsbased on mutual respect and shared

information in the health researchprocess.

Background: MedicalResearch and GovernanceHealth research is inherently a moralenterprise, characterized by asym-metrical relationships of trust andpower, underpinned by ethical ten-sions between means (eg, potentialfor risks posed to volunteers in theresearch process) and ends (the quest

for knowledge for the greatergood).23 Guiding moral principles inresearch ethics consider the overallpotential benefits accrued againstthe possible harms to volunteers,and formalized structures of researchgovernance exist to ensure that re-search is conducted in an ethicalmanner and that researchers act with

integrity.24 The advancement ofmedical knowledge and associatedresearch scandals involving abusesof power by health care profession-als and gross harm to research par-ticipants25 spawned the develop-ment of systematic ethical guidancein medical research.26 The protectivemeasures introduced rested on basic

and shared moral principles. Researchvolunteers were to be fully informedof the nature of the research, decidefreely about participation, and be as-sured that their participation wouldnot affect their health care and treat-

ment. Regulatory safeguards andguidelines were declared in theNuremberg code (1949),27 the World

Medical Association Declaration ofHelsinki (1964; last revised in 2008)28

and the Belmont Report (1979).29

Increased federal accountability forhuman subjects research is furtherillustrated in updated ethics guide-lines, such as the Council for Inter-national Organizations of Medical

SciencesWorld Health OrganizationsInternational Ethical Guidelines

for Biomedical Research Involving

Human Subjects (1993; updated2002),30 the Canadian Tri-Council Pol-icy Statement (1998; amendments in

2000, 2002, and 2005),31 and theStatement of Ethical Practice for the

British Sociological Association (2002;

appendix updated 2004).32 In theUnited States, the Office for HumanResearch Protections details researchregulation, offers education (is cur-rently running a campaign to informthe general public about research par-ticipation), and recently updated itsdocument on compliance oversight.33

Historically, guidelines for human sub-

ject protection are anchored in thebiomedical model,1 with clinical trialsacting as the benchmark of researchgovernance.34

Broadly, the biomedical model restsin the positivist paradigm, whichtypically (although not always) gen-erates quantitative data. The positiv-

ist approach is associated with ahypothetico-deductive model of sci-encea systematic process in whichobservable facts are collected, vari-ables are scrutinized, hypotheses aretested, reliability and validity aremeasured, and statistical generaliza-tions are made (Fig. 1). The re-searcher objectively observes the

data and collects the results. In con-trast, qualitative research is associ-ated with the interpretivist para-digm, an inductive approach tostudying naturally occurring phe-nomena and understanding multiple

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Qualitative Research Ethics

616 f Physical Therapy Volume 90 Number 4 April 2010
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realities; it applies different criteriato validity and reliability, and an as-

sessment is made of how transfer-able the findings are to different set-tings (Fig. 1). Qualitative researchersattempt to interpret the meaningpeople attach to their experiencesand investigate the complexity, con-text, and process of lived experi-ence. Generally, ethnography, al-though its definition is debated, is a

favored interpretive approach thattypically involves participant obser-vation with interviews. Often re-searchers are unable to immersethemselves in the lives of those be-

ing studied, but conduct a series ofinterviews (often termed ethno-

graphic) in an attempt to gain anin-depth understanding of individ-ual experience. The researcher co-constructs the data generated, actingas the research instrument. Samplescan range from single cases to large-scale studies, depending on the re-search aim.35 Quantitative and quali-tative approaches typically ask

different questions and gain differenttypes of evidence, all of which areneeded to fully inform an evidencebase.20 It should be noted that posi-tivist and interpretivist approaches

are not always tied to particularmethods and that researchers often

are involved in mixed-methods initi-atives and make decisions about re-search design based on pragmaticfactors rather than philosophicalpreferences.36

Although qualitative research is in-creasingly addressed in researchcompliance guidelines for the pro-

tection of human subjects,31 theprinciple-based approach to con-ducting ethical research is com-monly cited as the most appropriateframework for ensuring human sub-

Figure 1.Model illustrating examples of positivist and interpretivist approaches to research. Based on: Shepard KF, Jensen GM, School BJ, etal. Alternative approaches to research in physical therapy: positivism and phenomenology. Phys Ther. 1993:73:8897.




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ject protection: Respect for auton-omy, beneficence and non-maleficence has become a key

component of any discussion of theresearcher-researched relationship,

which, it is argued, will ensure thatthe end objective in qualitative re-search does nor override the rights,health, well-being and care of re-search participants.37(pp11511152)

However, evidence indicates thatmedical research ethics committees

encounter difficulties when assess-ing qualitative research, which sub-sequently has hampered research ofsensitive topics.1,38

The Application and Valueof Qualitative HealthResearchThe increasing relevance of qualita-tive research to health care practicehas been documented.3,35 Typicallydesigned to reveal a range of experi-ences and identify commonalitiesand differences between groups orindividuals, methodological ap-proaches include grounded theory,phenomenology, and narrative. In-

vestigation reveals how outcomes

are achieved and situations unfoldand highlights the interactions andminutiae of daily life. Qualitative ap-proaches have increased our under-standing of medication use (eg, re-vealing patient ambivalence and theshortcomings of the compliancemodel9) and highlighted contradic-

tions and tensions in practicing self-management not identified by avariable-based approach.8 Qualita-tive studies have offered explana-

tions for unexpected or contradic-tory findings revealed by quantitativestudies and shortcomings of arational-choice decision-makingmodel in seeking care and have iden-

tified unintended consequences ofservice developments.35 In physicaltherapy, grounded theory stud-ies20,39,40 have revealed the complexways in which health care practitio-ner experts make decisions. Such

studies contribute knowledge to anevidence base that cannot be gener-ated by a quantitative approach.41

Overall, qualitative research can of-fer useful stand-alone projects, evi-

dence alongside quantitative meth-ods, or a stage of a mixed methodsproject and can contribute to a bodyof work for synthesis.42

Here we describe an in-depth inter-view study and then focus on ethical

issues that arose throughout thestudy process. We use the traditionalprinciples of autonomy, justice, andbeneficence/nonmaleficence as anorganizing framework22,34 and com-ment on their utility in qualitative

research.

Research Strategies in aQualitative Health ResearchStudy: The EarlyRheumatoid Arthritis Help-Seeking Experience(ERAHSE) ProjectOur research aim was to gain an in-depth understanding of the mean-ings people applied to early symp-

toms of rheumatoid arthritis (RA)and their impact and the actions in-dividuals took in the context of theirdaily lives. We wanted to investigate

the lived experience of illness.4

We draw on interview extracts anddetailed field notes (from both thepilot study and the main study) toexplore and illustrate the links be-tween method and ethics. Becausethis is a discussion article that drawson data, we use basic description,43

remaining close to the data, and do

not make highly conceptual or ab-stract statements. As Sandelowskinoted, qualitative description is avaluable method, but often ne-glected as a stand-alone approach topresenting qualitative data.43 Wecompare the quantitative and quali-tative paradigms (Fig. 1) and identifythe ways in which traditional ethical

principles can be applied (Fig. 2),

focusing on the qualitative researchcontext.44

RecruitmentWe recruited individuals who had

been diagnosed with RA in the 12months prior to their recruitmentand who were English speaking andlived in British Columbia, Canada. Inour pilot study,45 recruitment pack-ages were mailed to 163 family phy-sicians and 4 rheumatologists for for-

warding to patients who fulfilled theinclusion criteria. Out of a target of10 participants, we recruited 8 par-ticipants (4 recruited through familyphysicians and 4 recruited throughrheumatologists). Follow-up contact

was attempted with the health careprofessionals, but no further partici-pants were recruited. This paucity of

participants reflects the low inci-dence of new cases of RA (33 per1,000 in North America), but alsoreveals problems, common to bothqualitative and quantitative re-search,46,47 with recruiting partici-pants through health care profes-sionals.4850 In most cases, we wereunable to speak to family physicians

to discuss recruitment but spoke toassistants, several of whom reportedphysicians did not take part in thistype of research. The pilot recruit-ment strategy was considered ade-quate for the pilot phase (we gainedin-depth data that warranted furtherinvestigation) but insufficient for themain study, in which we wanted to

gain a range of experiences based ondiverse social and illness factors in arange of settings. We also wanted toidentify similarities and differencesamong individuals.

For the main study, we recruited par-ticipants through patient organiza-tion Web sites, newsletters, and in-

formation leaflets at local arthritiscenters, as well as 4 rheumatologistsoffices. We gained 38 participants(37 female and 1 male). Although weoriginally had sought 36 participants,we extended recruitment (and




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adapted information leaflets) in thehope of gaining more male partici-pants; however, this attempt was un-

successful, and recruitment endedfor practical reasons.

Although in the main study we pro-vided more opportunity to self-select via patient organizations andarthritis centers, we encountered re-cruitment problems. Despite requir-ing an equal number of male and

female participants to gain insightinto gendered experiences, recruit-ing only 1 male participant limitedthe findings. Also, the majority ofparticipants who contacted us did so

via the recruitment leaflets, not theirhealth care professionals. Partici-pants indicated (in their initial con-

tact and during the interview) that amajor reason for taking part in thestudy was the hope that they wouldgain treatment or care benefits orthat they could share their story toassist others. This participant self-selection may have biased the sam-ple. It also was possible that thosevolunteers with few treatment or ill-

ness problems saw no reason to par-ticipate and that those who wereamong the most disadvantaged, withmultiple conditions, may not havehad access to the recruitment infor-

mation or could have had other pri-orities. This possibility does not di-lute the significance of the findings,

but it does highlight that caution andclarity are needed when makingdata-driven claims, for instance,about transferability of the findingsto other settings.

InterviewsThe guide was organized around 3broad, overlapping areas: (1) early

symptoms, including impact and ill-ness actions; (2) interactions withhealth care professionals and gaininga diagnosis; and (3) post-diagnosisexperiences. We also asked individ-

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




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uals their motivations for partici-pating in the research. Informedconsent was obtained, and all partic-ipants agreed to a follow-up tele-phone interview for elaboration andclarification and for the interviews tobe audio-recorded. Detailed field

notes were taken. The interviewswere transcribed verbatim, and iden-tifying information was removedfrom the transcripts. Pseudonyms,chosen by the participants, havebeen used for all interview data. Thestructure, content, and form of theguide were designed to elicit open anddetailed responses from the study par-

ticipants, giving them opportunities todiscuss their priorities. To avoid, as faras possible, researcher bias and med-

ical model preconceived ideas abouttreatments and decision making,consumer collaborators (volunteerson the research team with a diagno-sis of arthritis) contributed to the in-terview guide, offering their per-

spective on what topics should beincluded, the type of language orphrasing to be used, and the order ofthe questions asked. Thus, the lan-guage was anchored in the everydayworld rather than in a medical, ther-apeutic, or theoretical paradigm.

The interview was designed to helpbuild rapport (mutual trust and emo-

tional affinity) and aid validity (gainan in-depth account as close as pos-sible to participants experiences).Practical issues included arrangingthe interview for the convenience ofthe participant in terms of venue,timing, and comfort (eg, stretchbreaks were offered).

Knowledge TranslationWe define knowledge translation asan exchange of knowledge and per-spective among an interdisciplinaryteam (including practitioners andconsumers), as well as strategies fordissemination to a range of stake-

holders and decision-makers in ap-plied settings. We also include thetransfer of information between theresearch team and participants.Communication strategies were builtinto the research design to facilitateteam discussions and negotiate dif-ferent perspectives and their appli-cation in answering the research

question. Patient groups and healthpractitioners contributed key per-spectives to the interview guide and

dissemination process, which wasdesigned to offer a range of relevantdata formats and outlets encouragingbest use of the collective findings(peer-reviewed publications; special-ized and plain language/information

documents, conferences, round-tables, workshops, education initia-tives, and updates and results regu-larly published on arthritis Websites). Dissemination activities con-tinue to be aimed at different stake-holders to build a bank of knowledge

leading to actionable research/action. Regular (quarterly) progress

reports were sent out to all partici-pants and the research team, updat-ing them on all disseminationactivities.

The analysis to date has informed aninteractive educational initiativecalled the Animated Self-serve Web-based Research Tool (ANSWER),

which is near completion, to en-hance the patient experience, under-pinned by a shared decision-makingapproach and recognition of the roleof partnership in health care relation-ships. This initiative operationalizesthe concepts of integrated knowl-

edge translation and end-of-projectknowledge translation.51 The find-ings also have led to a longitudinalhelp-seeking study in another healthcare setting (the United States) and aCanada-wide survey to suggest hy-potheses about help-seeking to addto the knowledge base.

Emerging EthicalConsiderations in theQualitative Research

ProcessWe apply the concepts of autonomy,justice, and beneficence/nonmalefi-cence to discuss ethical concernsthat emerged in our study. We usethis principle-based approach be-cause it typically is used as a frame-work in assessing human protectionin biomedical research. However, it

increasingly is regarded as unsuitablein assessing ethical issues that arisein a qualitative paradigm1 (Fig. 2).Some claim it is insufficient and ne-glects the context of research,37

whereas others defend its utility ifthe principles are used flexibly andcontext is addressed.52

AutonomyAutonomy has been defined as thecapacity to think, decide, and act onthe basis of a freely made decision.52

Beauchamp and Childress22 identi-fied 2 fundamental components of

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 andsaid 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)




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autonomy: (1) liberty (independencefrom controlling influences) and (2)agency (capacity for intentional ac-

tion). Hewitt stated, In the contextof research, informed consent is an

explicit agreement by participantsto participate in the research afterreceiving and comprehending infor-mation regarding the nature of theresearch. Such consent is given with-out threat or inducement and re-quires that participants have the

mental capacity to give consent andvoluntariness37(p1152) From a qualita-tive perspective, informed consenttypically is considered an ongoingprocess,15 of which recruitment is apart. In our pilot study, participants

were recruited through the offices oftheir health care professionals, pro-voking potential ethical concerns re-

garding decision making and re-search participation.

Our study was designed to ensure, asfar as possible, that health care pro-fessionals had no personal contactwith patients and that participationremained confidential. Communica-tions between the researcher and

health care professionals were lim-ited to mailing recruitment docu-ments and associated general follow-ups and inquiries. Recruitmentdocuments were to be mailed to rel-evant patients from health care pro-fessionals offices. However, in thepilot study, several participants re-ported interpersonal contact with

their physician regarding participa-tion (Box 1, quotes 1, 2, and 3). It hasbeen noted that potential issues ofinducement and consent emerge inthe health care setting if a study par-ticipant is recruited through his orher physician.49 Issues of vulnerabil-ity and power may influence deci-sions to participate, and being re-

cruited by an individuals health careprofessional may pose obstacles tothe process of free and informedconsent.

Typically, participants in our pilotstudy described their physicians aspivotal resources and, in some cases,

as allies as they faced early-stage RAand accessed a range of medical ser-

vices and information at a particu-larly vulnerable time in their illnesstrajectory. This relationship has apotentially coercive influence onstudy participation. Study informa-tion from a trusted health care pro-fessional (particularly when gained

in the consultation) may put implicitpressure on the patient to partici-pate. It would be paternalistic to as-sume that the patient feels obliged orcoerced into volunteering, but safe-guards are needed to ensure the

decision-making process to take partin health research is fully informedand unencumbered.15 Also, if physi-

cians select patients beyond the in-clusion criteria, they may deny ac-cess to others by declining to pass onstudy information, perhaps for pater-nalistic reasons to protect patientsfrom an assumed burden of partici-pating or for deeming that the re-search and patient are not wellmatched. Any interpersonal com-

munication between patient andhealth professional regarding partic-ipation raises potential ethical con-cerns. Although patients may notnecessarily be perceived as forminga vulnerable group, in our study, wefound that individuals movedthrough vulnerable moments in theirillness trajectory, and this vulnerabil-

ity may have implications for how torecruit patients for research whileoffering them every opportunity tovolunteer without being coercive insubtle ways. Throughout this pro-cess a reflexive self-awareness wheninteracting with potential patientparticipants may assist those in-volved in recruitment to navigate a

path between being overly paternal-istic and practicing a subtle or nu-anced coercion.

Respect for autonomy encompassesan acknowledgment of agency and

respect for the participants priori-ties, experiences, and motivations.An interview situation may leave the

participant vulnerable to an implicitagenda of the researcher, who at-

tempts to balance listening to de-tailed accounts, against the aims ofthe research and practical consider-ations such as time. There is the po-tential to mute the participant bycategorizing some aspects of theconversation as going off topic and

keeping to an agenda of topics tobe covered. Considering many of theparticipants expressed they hadtaken part in the study to share theirexperiences, with several comment-ing I wanted to tell my story or I

have waited a long time for this andwith others coming to the interviewwith logs of their experiences, this is

of particular significance. Built intothe topic guide were opportunitiesfor participants to ask questions andgive feedback about the interview, aswell as introduce or elaborate ontheir own priorities. When applyingan ethics lens to the interview, thestrategic process of active listeningbecomes suffused with ethical mo-

ments. Negotiating the require-ments of the research aim and theautonomy of the participant in thereality of the interview situationbrings to the surface the at oddsrelationship of researcher and re-searched, which often is muted bydescriptions of rapport building.This process illustrates the ongoing

ethical moments that researchersface and the need for a reflexive ap-proach; that is, the researcher re-flects on the details of the researchprocess and her or his role and inter-actions with participants and takesactions accordingly.

Participants are vulnerable to being

misrepresented. Because the re-searcher co-constructs the interviewwith the participant and analyzesand interprets the talk, the potentialto misrepresent the individual andassociated groups is always present.




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In our study, interdisciplinary discus-sions highlighted different aspects ofthe transcripts as significant, and thiswas a constant reminder of the needto be ethically vigilant, staying astrue as possible to the reported ex-periences of the participant by, forexample, drawing on the preinter-view communications and field

notes to contextualize the interviewswhen interpreting the data. This pro-cess extends beyond being transpar-ent when making data-driven claimsand offering participants opportuni-ties to comment on the emergingfindings; it is underpinned by a re-flexivity that involves a continualself-awareness of the researchers

personal responses to the data.

JusticeHewitt stated, Concepts of justiceare explained in terms of what isdeserved by each individual, and towhat each individual is entitled, with-out partiality and with the aim of de-livering equitable treatment37(p1153)

Attending to this principle meansoffering participants a fair and equi-table distribution of burdens andbenefits. Although other forms of jus-tice, such as procedural justice, maybe applicable here, it is beyond the

scope of this article to explore therange of ways justice may be concep-tualized and utilized in discussions ofethical aspects of the qualitativeparadigm.

Many of the volunteers who madecontact conveyed how they hopedto benefit in some way from study

participation. Some hoped for infor-mation to help them manage theirsymptoms or for advice about a med-ical system that they found difficultto navigate (Box 2, quote 1). We of-fered a resource sheet to all partici-pants who contacted us, with detailsof Web sites and patient- andarthritis-related organizations that of-

fered advice and information. Someparticipants reported receiving theresource sheet was a benefit of tak-ing part in the study.

Some participants described the op-portunity to share their experiencesas a benefit and stated that takingpart in the study helped them face

and manage a new diagnosis of adebilitating, painful chronic illness.In such circumstances, being deniedaccess to research can be perceivedas a justice issue, for example, whena gatekeeper (eg, a health care pro-

fessional) offers study information tosome patients for reasons beyondthe formal inclusion criteria, denyingothers the opportunity for potentialbenefits. Patients may interpret be-ing denied access to research as be-ing denied a voice, which may beparticularly significant for those whofeel they are not being heard and

that their experiences were invali-dated in the medical consultation.The context in which individuals vol-unteer to participate in health re-search has implications for the waysin which researchers communicatenonaccess to potential participantswho may not fulfill the study criteriaand who may see subsequent non-

participation as being denied a formof care.

The most disadvantaged individualsmay not have access to research par-ticipation for a number of reasons;they may be preoccupied with nego-tiating multiple conditions (social,medical, and personal).53 Some of

our participants volunteered but didnot take part due to a reported in-ability to negotiate their illness, dailylife activities, and participation. Oth-ers may not have access to a gate-keeping professional (who may or

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 seesomebody about it. I just didnt like the idea . . . to think my fingers could be so swollen, I cant bend them for a wholeyear. 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 theInternet again. It upset me . . . . I was thinking . . . rheumatoid arthritis because of inflammation . . . even though mydoctor did not [think that]. I read [that] on the Internet, anyway, and I e-mailed you. I wanted to talk to somebody. Iwanted somebody to dump it on. (Nicolette)

Quote 2: As soon as I read it [study information leaflet], I thought there is somebody out there thats listening and going to beproactive and maybe help anybody else thats going through this. That is my only concern. People have to get into arheumatologist 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 thingswill 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 havebeen given, right? And I always know . . . often its hard to find people to do your research, right? And I just think . . . I amalways researching, right? And for me, its [learning about the results] the natural outcome. If you ever publish anything, Iwould love to read anything you find out. (Flossie)

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




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may not provide them with studyinformation); they may live in re-mote communities or may not have

access to recruitment materials fromthe Internet or patient organizations.

Giving participants the opportunityto express their experiences is a jus-tice issue because the interview con-tributes to our understanding ofhuman experience. Particular mean-ings, processes, and complexities

might remain hidden or misunder-stood if research does not generatein-depth knowledge of a range of ex-periences under investigation. Re-flexive construction of an interviewschedule or topic guide means re-

searchers being aware of the poten-tial to impose their perspectives insubtle ways on the interview,

through their use of language andchoice of content and providingspaces for participants to prioritizetheir concerns (in keeping with theresearchs broad aims). Analysis andinterpretation of interviews also arejustice issues if a qualitative studydesigned to explore the complexmessiness of the lived experience of

illness is explained in terms of vari-ables and cause and effect more suit-able to the positivist paradigm. Italso is important to apply theory toqualitative accounts in order to re-spect the experiences of individual ac-counts, while recognizing the broadercontext in which personal experi-ences take place, and to assess the

feasibility of transferring the findingsto other settings. Careful researcherattention to the complexity, multi-dimensionality, and nuances of con-text and to the relevance of theorywork to guard against a distortionof findings, which may stigmatizegroups, while neglecting fundamen-tal social problems.

Dissemination of the qualitative find-ings also can be framed as a justiceconcern if participants give theirtime and share their experiences(which may be burdensome), with

the understanding that they are con-tributing to a knowledge base to im-prove practice (which they may per-

ceive as a benefit). Participants inour study hoped to contribute to

medical knowledge and improve pa-tient experience of illness, treat-ment, and care; they conveyed help-ing others as a benefit of taking partin the research, even if they felt theypersonally would not benefit directlyfrom research participation (Box 2,

quotes 2 and 3).

Despite increasing applicability andvisibility, qualitative research still isneglected in some prominent medi-cal journals and can be seen as anec-

dotal, or criticized on the basis ofquantitative measures of reliability,validity, and generalizability.54 Ef-

forts need to be made to publishqualitative research widely and makeit accessible to different communi-ties and disciplines. It is a waste offunding resources if findings are notconsidered useful, worthy of publi-cation, or disseminated to suitablestakeholders.

Most participants in our study re-ported an interest in knowing theresults of the project. Some identifiedhow they perceived learning aboutthe research outcomes as a benefit oftaking part (Box 2, quote 4). The ac-counts make explicit the responsibil-ity the researcher has to participants55

to attempt to disseminate the research

findings and improve awareness ofthe results among all relevant stake-holders, including participants them-selves. A reflexive self-awareness aboutthe details and implications of theresearch process invites researchers tobe conscious of the justice issues fromstudy inception to dissemination.

Beneficence/NonmaleficenceThe principles of beneficence andnonmaleficence involve an obliga-tion to provide benefits for the pa-tient and to balance such benefits

against risks22 and require that theresearcher should do the patient noharm and should prevent harm and

remove existing sources of harm.56

This concern highlights a potential

conflict for health researchers whofulfill multiple roles, such as nurseresearch coordinators who advocateon behalf of the researcher (eg, prin-cipal investigator) and the patient, aswell as the potential for misunder-standing when the patient places

trust in the health researcher. Suchsituations raise ethical issues andhave been identified as warranting asort of trust wariness on behalf ofthe participant.15

Risks include overburdening individ-uals due to physician estimations ofpatient suitability beyond the inclu-

sion criteria when not engaging fullywith risks (or problems in assessingrisks) that are associated with quali-tative research rather than those inclinical trials. When obtaining con-sent for an interview study, it isnever possible to accurately estimaterisk, in terms of emotional upset, butwe can anticipate its potential and

take appropriate measures to pre-vent harm. In our study, respect forthe priorities of the participant andthe aims of the project were negoti-ated throughout the interview. Weattempted to recognize when it wasinappropriate to probe further, de-spite the interview guide, as the riskto a persons emotional well-being

may outweigh the hope of gainingrich data. For example, seeminglystraightforward questions (from theperspective of the interviewer)could elicit an emotional response(Box 3, quotes 1 and 2).

Ongoing decisions about how the in-terview unfolds need to be made in

vivo. Some participants talked inemotional terms when describingwhat prompted their first appoint-ment, as it symbolized a loss in theirlives and the start of what was, insome cases, a debilitating illness and




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an uncertain future. In another ex-ample, a seemingly innocuous ques-tion caused emotional upset for the

participant, who was close to tearsas she responded to a probe to gainfurther detail about family life andher children (Box 3, quote 2). Thisparticipant was able to continue inpaid employment, but a routine taskfor her symbolized being a mother,and she conveyed suffering and lossbeyond her functional debility.

Participants may offer personal andsensitive information spontaneously,with no apparent upset, or they maybecome distressed unexpectedly(Box 3, quotes 1 and 2). The obser-vation here is that aspects of risk aresubtle and ongoing and emotionalrisk in an interview situation cannot

be anticipated in advance, but thepotential for it can be, and research-ers need to attempt ethical listen-inga blend of flexibility, struc-ture, sensitivity, and pragmatism.The resource sheet we provided alsoincluded counseling service details(a free service offered locally).

There also is a risk of confusing theresearch interview with the thera-peutic interview, so the participantmay have an inaccurate estimation ofrisks and benefits. One participantnoted that she was so frustrated with

the health care system that shewanted to dump on somebody(Box 2, quote 1). Another partici-

pant reported severe illness, debili-tating symptoms, acute reactions tomedication, and depression and an-ticipated that she would find it help-ful just to talk to someone. Al-though participants may gainbenefits from the interview, the po-tential for psychological distressduring or after the interview

should not be underestimated. Also,the line between building rapport ina research interview and offering atherapeutic interview encounterneeds to be navigated with care.

One participant related how, in aprevious interview in a hospital set-ting, she had shared sensitive details

and found it difficult to adjust to thesudden termination of the interviewand being back out on the street.Another participant described dis-cussing help-seeking and had laterspent some time reflecting on herprevious actions and wonderingwhether she could have consultedher family physician earlier and pre-

vented symptom deterioration. Par-ticipants also reported more practi-cal burdens and inconvenience.Some conveyed negotiating partici-pation with their medication regi-mens, appointments, daily life, and

symptoms (fatigue, pain, and dis-comfort). Others described the im-pact of the interview. One partici-

pant noted how she had beensurprised by feeling physically tiredon returning to work after her lunch-time interview and had not antici-pated any negative impact, despiteher employer advising of this possi-bility. It is difficult to assess thesepotential risks prior to an interviewstudy, but this difficulty underscores

the emerging ethics in qualitative re-search and the need for a reflexiveapproach, anticipating ethical mo-ments and how to manage themthroughout the process, as well asbuilding measures into the study de-sign that will minimize harm.

DiscussionWe identified the value of qualitativehealth research57 and ethical issuesthat emerged in our in-depth inter-view study, applying the principle-based approach of autonomy,justice, and beneficence/nonmalefi-cence, which traditionally is associ-ated with human subject protectionin medical research, although in-

creasingly criticized for its suitabilityto qualitative research. Our findingsmirrored ethical concerns that arisein quantitative research (eg, issues ofcoercion and recruitment throughhealth care professionals). We also

Box 3.Beneficence/Nonmaleficence

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 fingers. 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 ofcounselors and taking some anti-depressants medication . . . [who] did go into a hospital at one time. All of this, of course, wasstressful. [My child] committed suicide . . . and from that time, I was diagnosed with depression because I was going to considersuicide 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 wasoverwhelmed. I couldnt hold a knife to cut cheese to make sandwiches, and in those days the kids were much younger, onewould have a meat sandwich, and one would have chicken, one would have ham, one would have roast beef, one would havemustard, 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.




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identified ethical considerations inthe research process (Fig. 2). Thereare fundamental differences between

the positivist and interpretivist para-digms (Fig. 1) that are core to the

different protections required for par-ticipants. The interpersonal researcher-researched relationship, which in-volves ongoing interactions, buildingmutual trust and respect, the activerole of the participant and researcherin co-constructing the data generation,

and the qualitative interpretation ofthe findings, is in direct contrast to theideal of the passive research partici-pant and the arms-length scientificresearcher who observes the phenom-enon and collects the results. The un-

folding nature of qualitative researchand the intersubjectivity of researcherand researched shifts the notion of in-

formed consent as a moment in timeand the lynchpin of human protectionto a process embedded with ethicalmoments58 inextricably linked to re-search design and methodology invit-ing reflexivity throughout.59

Our findings are limited to issues thatarose in our interview study. We did

not design the project to analyze eth-ical aspects of research, but have de-scriptively drawn on field notes andinterview extracts to illustrate ethi-cal issues that emerged. We use thetraditional principle-based approachas an exploratory exercise; we donot claim this framework is the mosteffective way of considering human

subject protection. Applying the tra-ditional approach to our qualitativestudy extends our knowledge of theutility and value of this approach incontext and is a strength of thisarticle.

In line with our study, recruitmentthrough gate-keeping has been seen

as a practical obstacle to research inthe primary care setting.48,50 Someauthors have suggested that physi-cians may not be suitably familiarwith qualitative research and its po-tential contribution to EBP,60,61 and

other authors have identified howthis lack of familiarity is paralleled inquantitative research.62 Other au-

thors broach ethical aspects and askwhether family physicians should

be encouraged to recruit patients byoffering both reimbursements andpayments46 and whether clinicianrecruitment of patients can be as-sumed to be coercive or whetherthis assumption is another form ofpaternalism.49 Delaney suggested

that research should be prioritizedand made directly relevant to thetraining and development of the non-academic clinician.50 Because ethicalissues can emerge throughout the re-search process and are not confined

to particular stages, such as gaininginformed consent, a reflexive ap-proach characterized by a thoughtful

and ongoing self-awareness, atten-tion to detail, and sensitivity to theindividuals role in the research en-terprise (eg, health care professionalas research worker/recruiter) high-lights relationship dynamics and en-hances ethical oversight. Educationand training that delineate the ethi-cal differences between the quanti-

tative and qualitative approachesseem key if health care professionalscontinue to play a role in research,including recruitment.

Gate-keeping can diminish auton-omy in both the positivist and inter-pretivist paradigms. Our findingssupport other patient-participant re-

ports of being recruited or influ-enced by health care professionals toparticipate in research such as inclinical trials.15 Other authors havecalled for an investigation into barri-ers to recruitment of groups per-ceived as vulnerable because of mis-guided ethical guidelines.63 Suchbarriers raise questions that also

were prompted in our study: Whendoes an individuals illness status in-duce vulnerability, and what is theimpact on decisions to participateand giving informed consent?38 Gate-keeping also can threaten the valid-

ity of the findings; if the researchfails to generate useful data (eg, dueto a compromised sample),45 the

subsequent wasted resources andproduction of research of limited va-

lidity are ethical issues.49

As in ourstudy, other types of recruitmentmay be more appropriate to offerindividuals the opportunity to exer-cise self-selection. This opportunityto exercise self-selection seems morein keeping with patient-centered

care and collaborative research. How-ever, sampling problems still arose inour study, illustrating that particulargroups may be under-represented inresearch and their experiences ne-glected in EBP. In Canada, effective

strategies need to be put in place toensure groups and individuals haveaccess to participation. These strate-

gies may involve building trust andreaching remote communities anddisadvantaged groups.

Reflecting our findings, the inter-view has been described as a moralendeavor,64 and 3 types of potentialethical problems in qualitative inter-views have been identified: (1) the

design itself, (2) the research rela-tionship, and (3) the process in-volved in interpreting qualitativedata, and particularly the role of theresearcher in co-constructing thefindings (results).65 Cox also notedthe importance of ethical listeningand being sensitive to when, andwhen not, to probe.66 Interviewer

awareness of insensitive probing isindicative of a reflexive approach;sometimes the offer of good datamay need to be relinquished in favorof good ethics. The potential forpsychological harm when sharingsensitive information in in-depth in-terviews and the impact of takingpart have been considered,67 as well

as the potential to distort findings.68

Our findings illustrated how inter-views are an effective way of gainingexperience of suffering69 and howethics emerge in interpersonal rela-




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tionships in the interview situa-tion.70 The researcher has a moralobligation to ensure that the re-

search is worthwhile when peopleshare time and suffering,71 and be-

cause there is scope to interpret andco-construct the realities that arethen part of the knowledge base, act-ing reflexively is crucial to ethicalpractice.37 Our experiences revealedthat it was difficult to know whenethical issues would arise, or how

nuanced (constructing the interviewguide) or unique (psychologicalharms) they would be.

Ethical issues emerged in the con-struction of the interview guide and

the practical circumstances of the in-terview. Skillful researchers try toavoid imposing their own structures

and assumptions upon intervieweesview of the world.3 Careful record-ing of field notes and analytic reflec-tion are required. Field notes serve asthe written account of what the re-searcher sees, hears, experiences,and thinks and supplement the inter-view data. The interview is an ethicalprocess, from the creation of the in-

terview guide to the analysis of theaccounts. This approach to ethics inresearch is informed by a processmodel of research ethics, wherebyconsiderations of autonomy and re-spect for the perspectives and expe-riences of consumers are centralfrom the early stages of studydesign.58

Regarding issues of knowledge trans-lation, our interdisciplinary teamfaced challenges in discussions thathighlighted our disciplinary assump-tions and diverse perspectives. Tofacilitate mutual respect and shareddecision making, measures werebuilt into the research process to en-

sure inclusion of all perspectives; on-going team communications werecrucial in order to clarify meaning,recognize subtle findings, and com-municate complexity effectively.

There also are ethical implicationsfor knowledge dissemination and thedevelopment, application, and visi-

bility of qualitative methods inhealth research. Although there has

been seminal qualitative health re-search for more than 50 years (eg,about the patient-practitioner rela-tionship72 and help-seeking73), dis-agreement exists about both thevalue and acceptance of the utility ofthe qualitative paradigm. Although

previously ignored or viewed as aweak source of evidence, Sand-elowski43 noted that qualitative re-search is now considered essential tothe EBP goal of improving healthcare. Atkin54 described how patient

accounts are still seen as meaning-less and not regarded as evidence,but rather as anecdotal. Thus, de-

spite the apparent shift beyond theoppositional quantitative and qualita-tive paradigms, opposition still char-acterizes many evaluative discus-sions in an interdisciplinary researchcontext. Atkin noted that an empha-sis on positivist-based priorities andquality appraisal may discourage themore reflexive engagement that char-

acterizes qualitative methods andasked: Is there a danger that bypressing for the inclusion of qualita-tive accounts in more applied re-search, often dominated by quantita-tive methods, we risk producinganalysis that is descriptive, uncon-textualised and little more than atoken gesture, paying lip service to

individual experience?54 This ques-tion illustrates the inextricable linkbetween ethics and methodology: iflip service is paid to investigating thelived experience of illness in all itsmessiness, there is a danger that wewill not do justice to participantaccounts.

ConclusionWe have identified: (1) that the tra-ditional principle-based approachcan be usefully applied to qualitativeresearch ethics, if we use the con-cepts flexibly and prioritize context

and process, and (2) that the realitiesof doing everyday ethics highlightethical moments and the need for a

reflexive stance at every level andstage of research. Reflexivity involves

the researcher always being aware ofthe role of self in the process, a sen-sitivity to the ethical concerns thatmay arise, and taking measures toprevent harm (eg, anticipating thatparticipants may experience psycho-logical distress). An ongoing aware-

ness of the ethical moments that mayarise throughout the research pro-cess and ones role in the processincreases ethical rigor at all stages ofresearch, such as when designingthe study (offering counseling ser-

vices or a resource sheet with usefuland valid Web sites) and during theinterview (how to listen sensitively

and when and when not to probe).

Ethical, rigorous, and useful qualita-tive research involves being account-able to research participants andechoes the ethical concerns in phys-ical therapy. An ethos of patient-centered care and issues of empathy,autonomy, and respect are high-

lighted in our account of qualitativeresearch from the studys inceptionto the dissemination of results. Anethical lens in qualitative health re-search brings particular challengesand insights to methodological con-cerns about recruitment procedures,the interview or other data-generationprocesses, and knowledge translation,

and, ultimately, the usefulness of thefindings to bring benefits to patients/consumers (and health care profes-sionals) and to enhance health care.

Dr Townsend conceptualized the article andwrote all drafts of the manuscript, con-ducted the majority of the interviews, led theanalysis, and was the principal investigatorduring the pilot phase of the project. Dr Coxconsulted on the ethical issues emergingfrom the project and data analysis and as-sisted with the writing of the manuscript byreading the manuscript, making comments,and clarifying content. Dr Li was the princi-pal investigator of the ERAHSE Project. As the




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senior author, she provided guidance ondrafts and contributed to the preparation ofthe manuscript.

The authors thank the participants, whoshared their time and experiences, and themembers of the ethics review board who

reviewed the study protocol.

Ethical approval was obtained from the Uni-versity of British Columbia Behavioral Re-search Ethics Board and the VancouverHealth Research Institute.

This article was developed from a papergiven at the CARE V International Confer-ence; April 2325, 2008; Oslo, Norway.

This research was funded by the CanadianInstitutes of Health Research (CIHR). Dr Coxwas supported through a career award fromthe Michael Smith Foundation for Health Re-search during the early part of this research.

Dr Li was supported by a CIHR New Investi-gator Award and an American College ofRheumatology Research and EducationFoundation Health Professional New Investi-gator Award.

This article was received December 4, 2008,and was accepted December 28, 2009.

DOI: 10.2522/ptj.20080388

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