CARE V

Conference Series

Qualitative Research Ethics:

Enhancing Evidence-Based Practice in
Physical Therapy
Anne Townsend, Susan M. Cox, Linda C. Li
A. Townsend, PhD, is Research As-
sociate, The W. Maurice Young
Background. Increasing challenges to health care systems and the prominence of Centre for Applied Ethics, Univer-
patient-centered care and evidence-based practice have fostered the application of sity of British Columbia, 235-6356
qualitative approaches in health care settings, prompting discussions of associated Agricultural Rd, Klinck Building,
ethical issues in a range of disciplines. Vancouver, British Columbia, Can-
ada V6T 1Z2, and Affiliate Re-
searcher, Arthritis Research Centre
Objectives. The purposes of this work were to identify and describe the appli- of Canada, Vancouver, British Co-
cation and value of qualitative health research for physical therapy and to identify lumbia, Canada. Address all corre-
ethical considerations in a qualitative research study. spondence to Dr Townsend at:
atownsen@interchange.ubc.ca.
Design. This was a qualitative interview study with telephone follow-ups. S.M. Cox, PhD, is Assistant Profes-
sor, The W. Maurice Young Centre
Methods. Forty-six participants were interviewed about their early experiences for Applied Ethics, University of
with rheumatoid arthritis. They also were asked what motivated them to volunteer British Columbia.
for the study. To inform the discussion of ethics in qualitative health research, this L.C. Li, PT, PhD, is Assistant Pro-
study drew on the in-depth interviews, took a descriptive approach to the data, and fessor and Harold Robinson/
applied the traditional ethical principles of autonomy, justice, and beneficence to the Arthritis Society Chair in Arthritic
study process. Diseases, Department of Physical
Therapy, University of British Co-
lumbia, and Research Scientist, Ar-
Results. Ethical issues emerged in this qualitative health research study that were thritis Research Centre of Canada,
both similar to and different from those that exist in a positivist paradigm (eg, clinical Vancouver, British Columbia,
research). With flexibility and latitude, the traditional principle approach can be Canada.
applied usefully to qualitative health research. [Townsend A, Cox SM, Li LC.
Qualitative research ethics: en-
Conclusions. These findings build on previous research and discussion in phys- hancing evidence-based practice
ical therapy and other disciplines that urge a flexible approach to qualitative research in physical therapy. Phys Ther.
2010;90:615– 628.]
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 © 2010 American Physical Therapy
reflexivity as a way to recognize ethical moments throughout qualitative research and Association
to help build methodological and ethical rigor in research relevant to physical
therapist practice.

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April 2010 Volume 90 Number 4 Physical Therapy f 615

Qualitative Research Ethics
I
ncreasing challenges to health care
systems and the prominence of
patient-centered care and evidence-
based practice (EBP) have fostered the
application of qualitative approaches
in health and illness concepts,1–12
prompting discussions of associated
ethical issues in a range of disciplines
(eg, medicine,1 ethics,13–15 social sci-
ence,16 health care17,18). Although
there is no unified definition or agreed-
upon way of doing qualitative re-
search, it has been noted that the qual-
itative approach has salience for
physical therapy, given its efforts to-
ward EBP,19 a patient-centered ap-
proach, and the call to focus on the
ethics of care.20 According to Jensen,
“Qualitative methods provide re-
searchers with the tools to examine
social 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 principles
of autonomy, justice, and benefi-
cence22 to the qualitative health re-
search process and outline: (1) the
development of medical research
and governance; (2) the application
and value of qualitative health re-
search; (3) research strategies in a
qualitative health research study;
and (4) emerging ethical consider-
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to be determined.
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This article was published ahead of
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616 f Physical Therapy Volume 90
ations in the qualitative research pro-
cess. In our discussion, we suggest
the process of reflexivity as a way to
foster ethical and methodological
rigor in applied qualitative health re-
search and, ultimately, to offer en-
hanced care. The concept of reflex-
ivity has been used in a variety of
ways in a range of disciplines; for the
purposes of this article, it is a re-
searcher self-awareness that frames
actions and interactions during the
research process. Being reflexive en-
genders attending to participant pri-
orities, respecting participant expe-
riences in the context of their daily
lives, and building relationships
based on mutual respect and shared
information in the health research
process.
Background: Medical
Research and Governance
Health research is inherently a moral
enterprise, characterized by asym-
metrical relationships of trust and
power, underpinned by ethical ten-
sions 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 benefits accrued against
the possible harms to volunteers,
and formalized structures of research
governance exist to ensure that re-
search 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 profession-
als and gross harm to research par-
ticipants25 spawned the develop-
ment 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 as-
sured that their participation would
not affect their health care and treat-
Number 4
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 guide-
lines, such as the Council for Inter-
national Organizations of Medical
Sciences!World Health Organization’s
International Ethical Guidelines
for Biomedical Research Involving
Human Subjects (1993; updated
2002),30 the Canadian Tri-Council Pol-
icy 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 Office for Human
Research Protections details research
regulation, offers education (is cur-
rently running a campaign to inform
the general public about research par-
ticipation), and recently updated its
document on compliance oversight.33
Historically, guidelines for human sub-
ject 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) gen-
erates quantitative data. The positiv-
ist approach is associated with a
hypothetico-deductive model of sci-
ence—a systematic process in which
observable “facts” are collected, vari-
ables are scrutinized, hypotheses are
tested, reliability and validity are
measured, 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 to
studying naturally occurring phe-
nomena and understanding multiple
April 2010

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 as-
sessment is made of how transfer-
able the findings are to different set-
tings (Fig. 1). Qualitative researchers
attempt to interpret the meaning
people attach to their experiences
and investigate the complexity, con-
text, and process of “lived experi-
ence.” Generally, ethnography, al-
though its definition is debated, is a
favored interpretive approach that
typically involves participant obser-
vation with interviews. Often re-
searchers are unable to immerse
themselves in the lives of those be-
April 2010
ing studied, but conduct a series of
interviews (often termed “ethno-
graphic”) in an attempt to gain an
in-depth understanding of individ-
ual experience. The researcher co-
constructs the data generated, acting
as the research instrument. Samples
can 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 different
types of evidence, all of which are
needed to fully inform an evidence
base.20 It should be noted that posi-
tivist and interpretivist approaches
Volume 90
Qualitative Research Ethics
are not always tied to particular
methods and that researchers often
are involved in mixed-methods initi-
atives and make decisions about re-
search design based on pragmatic
factors rather than philosophical
preferences.36
Although qualitative research is in-
creasingly addressed in research
compliance guidelines for the pro-
tection of human subjects,31 the
principle-based approach to con-
ducting ethical research is com-
monly cited as the most appropriate
framework for ensuring human sub-
Number 4 Physical Therapy f 617
Qualitative Research Ethics
ject protection: “Respect for auton-
omy, beneficence and non-
maleficence 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 re-
search does nor override the rights,
health, well-being and care of re-
search participants.”37(pp1151–1152)
However, evidence indicates that
medical research ethics committees
encounter difficulties when assess-
ing qualitative research, which sub-
sequently has hampered research of
sensitive topics.1,38
The Application and Value
of Qualitative Health
Research
The increasing relevance of qualita-
tive research to health care practice
has been documented.3,35 Typically
designed to reveal a range of experi-
ences and identify commonalities
and differences between groups or
individuals, methodological ap-
proaches include grounded theory,
phenomenology, and narrative. In-
vestigation reveals how outcomes
are achieved and situations unfold
and highlights the interactions and
minutiae of daily life. Qualitative ap-
proaches have increased our under-
standing of medication use (eg, re-
vealing patient ambivalence and the
shortcomings of the compliance
model9) and highlighted contradic-
tions and tensions in practicing self-
management not identified by a
variable-based approach.8 Qualita-
tive studies have offered explana-
tions for unexpected or contradic-
tory findings revealed by quantitative
studies and shortcomings of a
rational-choice decision-making
model in seeking care and have iden-
tified unintended consequences of
service developments.35 In physical
therapy, grounded theory stud-
ies20,39,40 have revealed the complex
ways in which health care practitio-
ner experts make decisions. Such
618 f Physical Therapy Volume 90
studies contribute knowledge to an
evidence 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 methods
project and can contribute to a body
of work for synthesis.42
Here we describe an in-depth inter-
view study and then focus on ethical
issues that arose throughout the
study process. We use the traditional
principles of autonomy, justice, and
beneficence/nonmaleficence as an
organizing framework22,34 and com-
ment on their utility in qualitative
research.
Research Strategies in a
Qualitative Health Research
Study: The Early
Rheumatoid Arthritis Help-
Seeking Experience
(ERAHSE) Project
Our 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 their
daily lives. We wanted to investigate
the “lived experience” of illness.4
We draw on interview extracts and
detailed field notes (from both the
pilot study and the main study) to
explore and illustrate the links be-
tween 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 ab-
stract statements. As Sandelowski
noted, qualitative description is a
valuable method, but often ne-
glected as a stand-alone approach to
presenting qualitative data.43 We
compare the quantitative and quali-
tative paradigms (Fig. 1) and identify
the ways in which traditional ethical
principles can be applied (Fig. 2),
Number 4
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 pack-
ages were mailed to 163 family phy-
sicians and 4 rheumatologists for for-
warding to patients who fulfilled the
inclusion criteria. Out of a target of
10 participants, we recruited 8 par-
ticipants (4 recruited through family
physicians and 4 recruited through
rheumatologists). Follow-up contact
was attempted with the health care
professionals, but no further partici-
pants were recruited. This paucity of
participants reflects the low inci-
dence of new cases of RA (33 per
1,000 in North America), but also
reveals problems, common to both
qualitative and quantitative re-
search,46,47 with recruiting partici-
pants through health care profes-
sionals.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 recruit-
ment strategy was considered ade-
quate for the pilot phase (we gained
in-depth data that warranted further
investigation) but insufficient 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 par-
ticipants through patient organiza-
tion Web sites, newsletters, and in-
formation leaflets at local arthritis
centers, as well as 4 rheumatologists’
offices. We gained 38 participants
(37 female and 1 male). Although we
originally had sought 36 participants,
we extended recruitment (and
April 2010

Figure 2.
Model illustrating theoretical approaches in research and associated ethical issues.
adapted information leaflets) in the
hope of gaining more male partici-
pants; however, this attempt was un-
successful, and recruitment ended
for practical reasons.
Although in the main study we pro-
vided more opportunity to “self-
select” via patient organizations and
arthritis centers, we encountered re-
cruitment problems. Despite requir-
ing an equal number of male and
female participants to gain insight
into gendered experiences, recruit-
ing only 1 male participant limited
the findings. Also, the majority of
participants who contacted us did so
April 2010
via the recruitment leaflets, not their
health care professionals. Partici-
pants indicated (in their initial con-
tact and during the interview) that a
major reason for taking part in the
study was the hope that they would
gain treatment or care benefits or
that they could share their story to
assist others. This participant self-
selection may have biased the sam-
ple. It also was possible that those
volunteers with few treatment or ill-
ness problems saw no reason to par-
ticipate and that those who were
among the most disadvantaged, with
multiple conditions, may not have
had access to the recruitment infor-
Volume 90
Qualitative Research Ethics
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 and
clarity are needed when making
data-driven claims, for instance,
about transferability of the findings
to other settings.
Interviews
The guide was organized around 3
broad, overlapping areas: (1) early
symptoms, including impact and ill-
ness actions; (2) interactions with
health care professionals and gaining
a diagnosis; and (3) post-diagnosis
experiences. We also asked individ-
Number 4 Physical Therapy f 619
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 partici-
pating in the research. Informed
consent was obtained, and all partic-
ipants agreed to a follow-up tele-
phone interview for elaboration and
clarification and for the interviews to
be audio-recorded. Detailed field
notes were taken. The interviews
were transcribed verbatim, and iden-
tifying 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 par-
ticipants, giving them opportunities to
discuss their priorities. To avoid, as far
as possible, researcher bias and med-
ical model preconceived ideas about
treatments and decision making,
consumer collaborators (volunteers
on the research team with a diagno-
sis of arthritis) contributed to the in-
terview guide, offering their per-
spective on what topics should be
included, the type of language or
phrasing to be used, and the order of
the questions asked. Thus, the lan-
guage was anchored in the everyday
world rather than in a medical, ther-
apeutic, or theoretical paradigm.
The interview was designed to help
build rapport (mutual trust and emo-
tional affinity) and aid validity (gain
an in-depth account as close as pos-
sible 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 define knowledge translation as
an exchange of knowledge and per-
spective among an interdisciplinary
team (including practitioners and
consumers), as well as strategies for
dissemination to a range of stake-
holders and decision-makers in ap-
plied 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 dif-
ferent perspectives and their appli-
cation in answering the research
question. Patient groups and health
practitioners contributed key per-
spectives 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 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 Web
sites). 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 dissemination
activities.
The analysis to date has informed an
interactive educational initiative
called 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-making
approach and recognition of the role
of partnership in health care relation-
ships. This initiative operationalizes
the concepts of integrated knowl-
edge translation and end-of-project
knowledge translation.51 The find-
ings also have led to a longitudinal
help-seeking study in another health
care setting (the United States) and a
Canada-wide survey to suggest hy-
potheses 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 beneficence/nonmalefi-
cence to discuss ethical concerns
that emerged in our study. We use
this principle-based approach be-
cause it typically is used as a frame-
work 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 insufficient and ne-
glects the context of research,37
whereas others defend its utility if
the principles are used flexibly and
context is addressed.52
Autonomy
Autonomy has been defined as the
capacity to think, decide, and act on
the basis of a freely made decision.52
Beauchamp and Childress22 identi-
fied 2 fundamental components of

620 f Physical Therapy Volume 90 Number 4 April 2010


autonomy: (1) liberty (independence
from controlling influences) and (2)
agency (capacity for intentional ac-
tion). Hewitt stated, “In the context
of research, informed consent is an
explicit agreement by participants
to participate in the research after
receiving and comprehending infor-
mation regarding the nature of the
research. Such consent is given with-
out threat or inducement and re-
quires that participants have the
mental capacity to give consent and
voluntariness”37(p1152) From a qualita-
tive 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 offices of
their health care professionals, pro-
voking potential ethical concerns re-
garding decision making and re-
search participation.
Our study was designed to ensure, as
far as possible, that health care pro-
fessionals had no personal contact
with patients and that participation
remained 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. Recruitment
documents were to be mailed to rel-
evant patients from health care pro-
fessionals’ offices. However, in the
pilot study, several participants re-
ported interpersonal contact with
their physician regarding participa-
tion (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 par-
ticipant is recruited through his or
her physician.49 Issues of vulnerabil-
ity and power may influence deci-
sions to participate, and being re-
cruited by an individual’s health care
professional may pose obstacles to
the process of free and informed
consent.
April 2010
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 ser-
vices and information at a particu-
larly vulnerable time in their illness
trajectory. This relationship has a
potentially coercive influence on
study participation. Study informa-
tion from a trusted health care pro-
fessional (particularly when gained
in the consultation) may put implicit
pressure on the patient to partici-
pate. It would be paternalistic to as-
sume that the patient feels obliged or
coerced into volunteering, but safe-
guards are needed to ensure the
decision-making process to take part
in health research is fully informed
and unencumbered.15 Also, if physi-
cians select patients beyond the in-
clusion criteria, they may deny ac-
cess to others by declining to pass on
study information, perhaps for pater-
nalistic reasons to “protect” patients
from an assumed burden of partici-
pating or for deeming that the re-
search and patient are “not well
matched.” Any interpersonal com-
munication between patient and
health professional regarding partic-
ipation raises potential ethical con-
cerns. 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 vulnerabil-
ity 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 pro-
cess a reflexive self-awareness when
interacting with potential patient
participants 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 encompasses
an acknowledgment of agency and
Volume 90
Qualitative Research Ethics
respect for the participants’ priori-
ties, experiences, and motivations.
An interview situation may leave the
participant vulnerable to an implicit
agenda of the researcher, who at-
tempts to balance listening to de-
tailed accounts, against the aims of
the research and practical consider-
ations such as time. There is the po-
tential 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 comment-
ing “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 significance. 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 mo-
ments.” Negotiating the require-
ments 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 re-
searched, which often is muted by
descriptions of rapport building.
This process illustrates the ongoing
ethical moments that researchers
face and the need for a reflexive ap-
proach; that is, the researcher re-
flects on the details of the research
process and her or his role and inter-
actions with participants and takes
actions accordingly.
Participants are vulnerable to being
misrepresented. Because the re-
searcher 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.
Number 4 Physical Therapy f 621
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 didn’t like the idea . . . to think my fingers could be so swollen, I can’t bend them for a whole
year. And then he gave me Celebrex,a so I went home. That’s 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 inflammation . . . 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 leaflet], I thought there is somebody out there that’s listening and going to be
proactive and maybe help anybody else that’s going through this. That is my only concern. People have to get into a
rheumatologist early; you can’t 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 I’m 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 it’s so important, and it’s also a way of giving back some of the good things I have
been given, right? And I always know . . . often it’s hard to find people to do your research, right? And I just think . . . I am
always researching, right? And for me, it’s [learning about the results] the natural outcome. If you ever publish anything, I
would 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.

In our study, interdisciplinary discus-
sions highlighted different aspects of
the transcripts as significant, and this
was a constant reminder of the need
to be “ethically vigilant,” staying as
true as possible to the reported ex-
periences of the participant by, for
example, drawing on the preinter-
view communications and field
notes to contextualize the interviews
when interpreting the data. This pro-
cess extends beyond being transpar-
ent when making data-driven claims
and offering participants opportuni-
ties to comment on the emerging
findings; it is underpinned by a re-
flexivity 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, with-
out partiality and with the aim of de-
livering equitable treatment”37(p1153)
Attending to this principle means
offering participants a fair and equi-
table distribution of burdens and
benefits. Although other forms of jus-
tice, such as procedural justice, may
be applicable here, it is beyond the
scope of this article to explore the
range of ways justice may be concep-
tualized and utilized in discussions of
ethical aspects of the qualitative
paradigm.
Many of the volunteers who made
contact conveyed how they hoped
to benefit in some way from study
participation. Some hoped for infor-
mation to help them manage their
symptoms or for advice about a med-
ical system that they found difficult
to navigate (Box 2, quote 1). We of-
fered a resource sheet to all partici-
pants who contacted us, with details
of Web sites and patient- and
arthritis-related organizations that of-
fered advice and information. Some
participants reported receiving the
resource sheet was a benefit of tak-
ing part in the study.
Some participants described the op-
portunity to share their experiences
as a benefit 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
benefits. Patients may interpret be-
ing denied access to research as be-
ing denied a voice, which may be
particularly significant for those who
feel 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 ways
in which researchers communicate
nonaccess to potential participants
who may not fulfill the study criteria
and who may see subsequent non-
participation as being denied a form
of care.
The most disadvantaged individuals
may 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 did
not take part due to a reported in-
ability to negotiate their illness, daily
life activities, and participation. Oth-
ers may not have access to a gate-
keeping professional (who may or

622 f Physical Therapy Volume 90 Number 4 April 2010


may not provide them with study
information); they may live in re-
mote 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 jus-
tice issue because the interview con-
tributes to our understanding of
human experience. Particular mean-
ings, processes, and complexities
might remain hidden or misunder-
stood if research does not generate
in-depth knowledge of a range of ex-
periences under investigation. Re-
flexive construction of an interview
schedule or topic guide means re-
searchers being aware of the poten-
tial 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
research’s 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 vari-
ables and cause and effect more suit-
able to the positivist paradigm. It
also is important to apply theory to
qualitative accounts in order to re-
spect the experiences of individual ac-
counts, while recognizing the broader
context in which personal experi-
ences take place, and to assess the
feasibility of transferring the findings
to other settings. Careful researcher
attention to the complexity, multi-
dimensionality, and nuances of con-
text and to the relevance of theory
work to guard against a distortion
of findings, which may stigmatize
groups, while neglecting fundamen-
tal social problems.
Dissemination of the qualitative find-
ings also can be framed as a justice
concern if participants give their
time and share their experiences
(which may be burdensome), with
April 2010
the understanding that they are con-
tributing to a knowledge base to im-
prove practice (which they may per-
ceive as a benefit). Participants in
our 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 part
in the research, even if they felt they
personally would not benefit directly
from research participation (Box 2,
quotes 2 and 3).
Despite increasing applicability and
visibility, qualitative research still is
neglected in some prominent medi-
cal journals and can be seen as anec-
dotal, or criticized on the basis of
quantitative measures of reliability,
validity, and generalizability.54 Ef-
forts need to be made to publish
qualitative research widely and make
it accessible to different communi-
ties and disciplines. It is a waste of
funding resources if findings are not
considered useful, worthy of publi-
cation, or disseminated to suitable
stakeholders.
Most participants in our study re-
ported an interest in knowing the
results of the project. Some identified
how they perceived learning about
the research outcomes as a benefit of
taking 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 of
the results among all relevant stake-
holders, including participants them-
selves. A reflexive 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.
Beneficence/
Nonmaleficence
The principles of beneficence and
nonmaleficence involve an obliga-
tion to provide benefits for the pa-
tient and to balance such benefits
Volume 90
Qualitative Research Ethics
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
conflict for health researchers who
fulfill multiple roles, such as nurse
research coordinators who advocate
on behalf of the researcher (eg, prin-
cipal investigator) and the patient, as
well as the potential for misunder-
standing when the patient places
trust in the health researcher. Such
situations raise ethical issues and
have been identified as warranting a
sort of “trust wariness” on behalf of
the participant.15
Risks include overburdening individ-
uals due to physician estimations of
patient suitability beyond the inclu-
sion criteria when not engaging fully
with risks (or problems in assessing
risks) that are associated with quali-
tative research rather than those in
clinical trials. When obtaining con-
sent 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 pre-
vent harm. In our study, respect for
the priorities of the participant and
the aims of the project were negoti-
ated throughout the interview. We
attempted to recognize when it was
inappropriate to probe further, de-
spite the interview guide, as the risk
to a person’s 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 in-
terview unfolds need to be made in
vivo. Some participants talked in
emotional terms when describing
what prompted their first appoint-
ment, as it symbolized a loss in their
lives and the start of what was, in
some cases, a debilitating illness and
Number 4 Physical Therapy f 623
Qualitative Research Ethics

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 wasn’t 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 couldn’t 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 ex-
ample, a seemingly innocuous ques-
tion 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 obser-
vation 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 research-
ers need to attempt “ethical listen-
ing”—a blend of flexibility, struc-
ture, 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 thera-
peutic interview, so the participant
may have an inaccurate estimation of
risks and benefits. One participant
noted that she was so frustrated with
the health care system that she
wanted to “dump” on somebody
(Box 2, quote 1). Another partici-
pant reported severe illness, debili-
tating symptoms, acute reactions to
medication, and depression and an-
ticipated that she would find it help-
ful “just to talk to someone.” Al-
though participants may gain
benefits from the interview, the po-
tential 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 set-
ting, she had shared sensitive details
and found it difficult to adjust to the
sudden termination of the interview
and being back out “on the street.”
Another participant described dis-
cussing help-seeking and had later
spent some time reflecting on her
previous actions and wondering
whether she could have consulted
her 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 been
surprised by feeling physically tired
on returning to work after her lunch-
time interview and had not antici-
pated any negative impact, despite
her employer advising of this possi-
bility. It is difficult to assess these
potential risks prior to an interview
study, but this difficulty underscores
the emerging ethics in qualitative re-
search and the need for a reflexive
approach, anticipating ethical mo-
ments and how to manage them
throughout the process, as well as
building measures into the study de-
sign that will minimize harm.
Discussion
We identified the value of qualitative
health research57 and ethical issues
that 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 protection
in medical research, although in-
creasingly criticized for its suitability
to qualitative research. Our findings
mirrored ethical concerns that arise
in quantitative research (eg, issues of
coercion and recruitment through
health care professionals). We also

624 f Physical Therapy Volume 90 Number 4 April 2010


identified ethical considerations in
the research process (Fig. 2). There
are 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, 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 findings, is in direct contrast to the
ideal of the passive research partici-
pant and the “arms-length” scientific
researcher who observes the phenom-
enon and collects the results. The un-
folding nature of qualitative research
and the intersubjectivity of researcher
and researched shifts the notion of in-
formed consent as “a moment in time”
and the lynchpin of human protection
to a process embedded with ethical
moments58 inextricably linked to re-
search design and methodology invit-
ing reflexivity throughout.59
Our findings are limited to issues that
arose 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 and
interview extracts to illustrate ethi-
cal 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 tra-
ditional 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 physi-
cians may not be suitably familiar
with qualitative research and its po-
tential contribution to EBP,60,61 and
April 2010
other authors have identified how
this lack of familiarity is paralleled in
quantitative research.62 Other au-
thors 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 as-
sumed 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 non-
academic clinician.50 Because ethical
issues can emerge throughout the re-
search process and are not confined
to particular stages, such as gaining
informed consent, a reflexive ap-
proach characterized by a thoughtful
and ongoing self-awareness, atten-
tion to detail, and sensitivity to the
individual’s role in the research en-
terprise (eg, health care professional
as research worker/recruiter) high-
lights relationship dynamics and en-
hances ethical oversight. Education
and training that delineate the ethi-
cal differences between the quanti-
tative and qualitative approaches
seem key if health care professionals
continue to play a role in research,
including recruitment.
Gate-keeping can diminish auton-
omy in both the positivist and inter-
pretivist paradigms. Our findings
support other patient-participant re-
ports of being recruited or influ-
enced by health care professionals to
participate in research such as in
clinical trials.15 Other authors have
called for an investigation into barri-
ers to recruitment of groups per-
ceived as vulnerable because of mis-
guided ethical guidelines.63 Such
barriers raise questions that also
were prompted in our study: When
does an individual’s illness status in-
duce vulnerability, and what is the
impact on decisions to participate
and giving informed consent?38 Gate-
keeping also can threaten the valid-
Volume 90
Qualitative Research Ethics
ity of the findings; 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 va-
lidity are ethical issues.49 As in our
study, other types of recruitment
may be more appropriate to offer
individuals the opportunity to exer-
cise self-selection. This opportunity
to exercise self-selection seems more
in keeping with patient-centered
care and collaborative research. How-
ever, sampling problems still arose in
our study, illustrating that particular
groups may be under-represented in
research and their experiences ne-
glected in EBP. In Canada, effective
strategies need to be put in place to
ensure groups and individuals have
access to participation. These strate-
gies may involve building trust and
reaching remote communities and
disadvantaged groups.
Reflecting our findings, the inter-
view has been described as a moral
endeavor,64 and 3 types of potential
ethical 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 qualitative
data, and particularly the role of the
researcher in co-constructing the
findings (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 reflexive 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 in-
terviews and the impact of taking
part have been considered,67 as well
as the potential to distort findings.68
Our findings illustrated how inter-
views are an effective way of gaining
experience of suffering69 and how
ethics emerge in interpersonal rela-
Number 4 Physical Therapy f 625
Qualitative Research Ethics
tionships in the interview situa-
tion.70 The researcher has a moral
obligation to ensure that the re-
search is worthwhile when people
share time and suffering,71 and be-
cause there is scope to interpret and
co-construct the realities that are
then part of the knowledge base, act-
ing reflexively is crucial to ethical
practice.37 Our experiences revealed
that it was difficult 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 con-
struction of the interview guide and
the practical circumstances of the in-
terview. Skillful researchers try to
avoid imposing their own structures
and assumptions upon interviewees’
view of the world.3 Careful record-
ing of field notes and analytic reflec-
tion are required. Field notes serve as
the written account of what the re-
searcher sees, hears, experiences,
and thinks and supplement the inter-
view data. The interview is an ethical
process, from the creation of the in-
terview 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 re-
spect for the perspectives and expe-
riences of consumers are central
from the early stages of study
design.58
Regarding issues of knowledge trans-
lation, our interdisciplinary team
faced challenges in discussions that
highlighted our disciplinary assump-
tions and diverse perspectives. To
facilitate mutual respect and shared
decision making, measures were
built into the research process to en-
sure inclusion of all perspectives; on-
going team communications were
crucial in order to clarify meaning,
recognize subtle findings, and com-
municate complexity effectively.
626 f Physical Therapy Volume 90
There also are ethical implications
for knowledge dissemination and the
development, application, and visi-
bility of qualitative methods in
health 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 the
value and acceptance of the utility of
the qualitative paradigm. Although
previously ignored or viewed as a
weak source of evidence, Sand-
elowski43 noted that qualitative re-
search is now considered essential to
the EBP goal of improving health
care. 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 the
oppositional quantitative and qualita-
tive paradigms, opposition still char-
acterizes many evaluative discus-
sions in an interdisciplinary research
context. Atkin noted that an empha-
sis on positivist-based priorities and
quality appraisal may discourage the
more reflexive engagement that char-
acterizes qualitative methods and
asked: “Is there a danger that by
pressing for the inclusion of qualita-
tive accounts in more applied re-
search, often dominated by quantita-
tive methods, we risk producing
analysis that is descriptive, uncon-
textualised and little more than a
token gesture, paying lip service to
individual experience?”54 This ques-
tion 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.
Conclusion
We have identified: (1) that the tra-
ditional principle-based approach
can be usefully applied to qualitative
research ethics, if we use the con-
cepts flexibly and prioritize context
Number 4
and process, and (2) that the realities
of doing “everyday ethics” highlight
ethical moments and the need for a
reflexive stance at every level and
stage of research. Reflexivity involves
the researcher always being aware of
the role of self in the process, a sen-
sitivity to the ethical concerns that
may arise, and taking measures to
prevent harm (eg, anticipating that
participants may experience psycho-
logical distress). An ongoing aware-
ness of the ethical moments that may
arise throughout the research pro-
cess and one’s role in the process
increases ethical rigor at all stages of
research, such as when designing
the study (offering counseling ser-
vices 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 qualita-
tive research involves being account-
able to research participants and
echoes 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 qualitative
research from the study’s inception
to the dissemination of results. An
ethical lens in qualitative health re-
search brings particular challenges
and insights to methodological con-
cerns about recruitment procedures,
the interview or other data-generation
processes, and knowledge translation,
and, ultimately, the usefulness of the
findings to bring benefits to patients/
consumers (and health care profes-
sionals) and to enhance health care.
Dr Townsend conceptualized the article and
wrote all drafts of the manuscript, con-
ducted 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 as-
sisted with the writing of the manuscript by
reading the manuscript, making comments,
and clarifying content. Dr Li was the princi-
pal investigator of the ERAHSE Project. As the
April 2010

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 Uni-
versity of British Columbia Behavioral Re-
search Ethics Board and the Vancouver
Health Research Institute.
This article was developed from a paper
given at the CARE V International Confer-
ence; April 23–25, 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 Re-
search during the early part of this research.
Dr Li was supported by a CIHR New Investi-
gator Award and an American College of
Rheumatology Research and Education
Foundation 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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