841839

research-article2019
QRJ0010.1177/1468794119841839Qualitative ResearchShaw et al.

Article Q
Ethics and positionality in R
qualitative research with Qualitative Research

vulnerable and marginal 2020, Vol. 20(3) 277­–293

© The Author(s) 2019

groups
Article reuse guidelines:
sagepub.com/journals-permissions
DOI: 10.1177/1468794119841839
https://doi.org/10.1177/1468794119841839
journals.sagepub.com/home/qrj

Rhonda M. Shaw
Victoria University of Wellington, New Zealand

Julie Howe
Victoria University of Wellington, New Zealand

Jonathan Beazer
Victoria University of Wellington, New Zealand

Toni Carr
Victoria University of Wellington, New Zealand

Abstract
Social scientists are increasingly attentive to the practical importance of research ethics and
professional codes of conduct when undertaking studies with human participants, especially
around sensitive topics. In New Zealand, the social and cultural context of research praxis is also
shaped by institutional principles that ensure research participants feel safe, respected, and heard
when participating in research, and that the knowledge outcomes of the research process will be
disseminated and shared with relevant cultural groups. In this article, we present four case studies
based on projects that discuss researcher positionality in relation to the ethical and emotional
work involved in undertaking research on sensitive topics with individuals from vulnerable and
marginal groups. In doing so, we foreground the importance of articulating and managing emotion
in research on sensitive topics, and suggest measures to ensure the well-being of researchers
engaged in studies of this kind.

Keywords
emotion, insider/outsider status, qualitative research, sensitive topics, social justice, vulnerability

Corresponding author:
Rhonda M. Shaw, School of Social and Cultural Studies, Victoria University of Wellington, PO Box 600,
Wellington 6140, New Zealand.
Email: [email protected]
278 Qualitative Research 20(3)

Introduction
Social scientists are increasingly attentive to the practical importance of research ethics
and professional codes of conduct when undertaking studies with human participants
around sensitive topics. In the four case studies that follow, we focus on some of the ethi-
cal issues that researchers face when their research is deemed sensitive. Our engagement
with this topic stems from a workshop on research ethics held at Victoria University of
Wellington in New Zealand in 2016. The workshop was designed to bring together schol-
ars and postgraduate students in the social sciences to discuss their experiences of par-
ticipatory research with groups and communities identified as culturally or socially
disadvantaged. In the following discussion, we examine the ethical responsibilities of
researchers involved in undertaking study with people from vulnerable and marginal
groups. In doing so, we use self-reflection to connect our personal research experiences
to some of the wider ethical, social and political issues surrounding sensitive qualitative
research. Although we discuss New Zealand case studies in this article, we regard our
framework as relevant elsewhere, and for populations not normally deemed vulnerable.
Guillemin and Gillam’s (2004) distinction between ‘procedural ethics’ and ‘ethics in
practice’ is commonly used to frame what counts as ethical research. For Guillemin and
Gillam, procedural ethics involves seeking formal approval from a relevant ethics com-
mittee to undertake research, in accordance with institutional policy outlining ethical
standards, before that research is conducted. Ethics in practice refers to the everyday,
situational, and unanticipated ethical issues that occur when doing research with others.
At the authors’ institutional location, the 2016 ethics policy procedure setting the stand-
ards for research involving human participants incorporated six key principles. Principles
(a) respect and care for persons and (b) acknowledgement of the Treaty of Waitangi (Te
Tiriti o Waitangi) are central to our discussion. Principle (a) involves recognition and
respect for the autonomy and dignity of the individual and is constituted by seven crite-
ria: informed consent free of coercion, limitation of deception, special care of vulnerable
participants, respect for property rights, minimisation of harm to the researcher, minimi-
sation of harm to the institution, and minimisation of harm to participants, groups or
communities. Principle (b) underpins social research practice in New Zealand.
We note Hammersley’s (2000: 4) observation that there exist different models of
researcher partisanship. Pākehā (New Zealanders of settler origin) researchers such as
ourselves, who study vulnerable and marginalised communities, often adopt liberal or
quasi-partisan research models that prioritise collaboration, beneficence, empowerment
and/or social justice outcomes for participants.1 As such, the guiding Te Tiriti o Waitangi
principles of partnership, protection, participation and practice, and the Te Ara Tika
Framework (Hudson et al., 2010), which combines western ethical principles with good
research practice in terms of whakapapa (building relationships), tika (ensuring good
research design), manaakitanga (cultural and social responsibility), and mana (justice
and equity), are a critical source of inspiration. These institutional principles influence
the social and cultural context of research praxis in New Zealand and define researchers’
responsibilities to and with Māori (the indigenous population of New Zealand) and non-
Māori (Tauiwi) alike. Applying the Te Ara Tika ethical framework at a mainstream and
good practice level, as we do in our research, entails processes that ensure research
Shaw et al. 279

participants feel safe, respected, and heard when participating in research, and that the
knowledge outcomes of the research will be disseminated and shared with relevant cul-
tural and social groups.
The concept of vulnerability is central to research ethics. While scholars such as Rogers
et al. (2012) maintain that all human beings are ontologically vulnerable, there is disagree-
ment around identifying and classifying vulnerable populations, and about when and in
which situations persons identified as belonging to those populations experience vulner-
ability (Lange et al., 2013, ten Have, 2014, 2015). An oft-cited definition is supplied by
Levine et al. (2004: 44), who state that populations deemed vulnerable are ‘categories of
people [who] are presumed to be more likely than others to be misled, mistreated, or oth-
erwise taken advantage of as participants in research.’ In this view, vulnerable persons are
susceptible of being harmed or injured in some way, or of being emotionally damaged or
offended (Levine et al., 2004). As such, the participation of vulnerable persons in research
requires special protections above those required for all human participants, as well as
responsiveness to their rights and welfare (ten Have, 2014).
Doing research with persons from vulnerable and marginal groups can be challeng-
ing, as there is the potential for a power imbalance between researchers and vulnerable
groups as a researched population. In this article, we seek to complicate notions of vul-
nerability and power by exploring what it means to produce ethical research when work-
ing with people from such groups. We take the view that qualitative research undertaken
with vulnerable groups is usually sensitive, but that research with people who are not
from vulnerable groups can also cover sensitive topics. In these situations, participants
may be susceptible to increased harms, such as emotional and psychological discomfort
or distress (for example, researching topics around sexuality, illicit substance use, family
relationships). At the same time, to critique the popular perspective of Levine et al.
(2004), experiences of vulnerability may be magnified or diminished depending on other
categories of difference in people’s lives relating to situations of inequality and power.
In the following discussion, Julie, Jonathan, and Toni each reflect on their own expe-
riences as researchers in criminology and sociology to discuss specific ethical chal-
lenges they encountered during their doctoral studies, and Rhonda draws on her
experience as a sociologist conducting empirical research for some time.2 First, we
foreground the importance of values beyond those conventionally outlined by institu-
tional ethics committees to ask, who benefits from the production of knowledge about
people from vulnerable and marginal groups? And, how do our own perspectives and
lived experience shape what counts as knowledge? Second, by speaking about our col-
lective research experiences, we seek to emphasise the importance of articulating and
managing emotion when undertaking research on sensitive topics. As Dickson-Swift
et al. (2009) and Lee and Renzetti (1990) observe, departing from conventional ethics
protocol, which encourages researchers to downplay emotion when studying others,
may be unavoidable when undertaking work of this nature. In fact, Carroll (2012)
argues that a productive form of emotional labour is linked to some qualitative research
approaches, especially studies dealing with sensitive topics. We agree. As Fitzpatrick
and Olson (2015) point out, researchers may be better prepared to think through ethical
issues when they arise and thereby respond accordingly by accepting that qualitative
research has potential to affect us. We conclude the case studies to comment on the
280 Qualitative Research 20(3)

importance of values such as vulnerability and social justice for researchers studying
sensitive topics and suggest measures consistent with those proposed by Dickson-Swift
et al. (2008) to ensure the well-being of researchers engaged in this form of research.

Julie: ‘where do I fit?’ research with ‘fat’ women

My doctoral research involves a qualitative project, researching the lived experience of
27 self-identified ‘fat’ women in New Zealand. Despite years of scientific research indi-
cating body-size reduction diets have a 95% failure rate, ‘fat’ patients are directed to diet
for the good of their health. Often stereotyped as being stupid or uneducated, those who
live in ‘fat’ bodies are stigmatised when they fail to lose weight as commanded; conse-
quently, the wealth of knowledge which ‘fat’ women (and men) offer is generally
excluded from research initiatives. Unlike dominant discourse around obesity, which
treats all fat bodies the same, my discussion privileges the unique knowledges of being
‘too big’ in a small-body focused-world from the perspective of fat women themselves.
Many of my participants did not like the term ‘fat,’ but nevertheless used it throughout
their interviews to talk about their body-size and how they believed others to perceive
them. To demonstrate respect, and to honour the narratives that have been shared, I
believe researchers should use the common terms, like ‘fat’, that their participants them-
selves use.
As a researcher, I take a view influenced by phenomenological approaches to qualita-
tive study, that it is important to reflexively acknowledge my own positionality when
interpreting the words of my research participants. I have lived most of my life as a fat
woman. A brush with illness in 2012 led me to a very restricted food regime and I am
now neither a very fat, nor slim, woman. However, my decades of ‘being fat’ have left an
indelible mark; the stigma and weight bias I have been exposed to means I continue to
view the world around me through a lens of heightened awareness, feeling and thinking
as the fat woman I once was. My embodied fat history conveys an insider privilege; a
backstory I believe makes me more empathetic towards other fat women than a researcher
who has never lived in a fat body. At the same time, I am aware that this status does not
make me an expert on the lives of all fat women, nor does it grant me automatic access
to their private thoughts and feelings. I recognise that my participants’ experiences are
filtered through my own biases and personal experience of being a fat woman, and I
believe it is essential that my own identity does not overshadow my research partici-
pants’ stories.
When the interviews for my project began, I was anxious that my smaller body-size
would influence what participants felt comfortable sharing with me. I worried that my
participants may consider me ‘too small’ to understand their anxieties around larger
body-sizes. Conversely, I worried if I confided that I had once been very fat, participants
may think I was implying they should lose weight too. I feared that the interviews could
deteriorate into a ‘diet’ dialogue where participants focused on the merits of various diets
rather than share the more embodied way their body-size had influenced the way they
lived their lives.
My first interview was with Gloria, who was indeed curious about where my interest
in large body-size originated from and I reluctantly shared a brief personal history with
Shaw et al. 281

her. From there, my concerns about what my body-size may mean to my participants
evaporated, since most of my subsequent participants were recruited through a snowball-
ing process, with my biography being transmitted from one participant to another.
Regardless, some anxiety remained, as I recognised that, like my participants, I am much
more than a body-size. I have other social and cultural features that afford me privilege
not all participants have access to; for example, I am a white, middle-class researcher,
and I was apprehensive about inadvertently offending Gloria, a participant who identi-
fied as New Zealand-born Samoan. Although I was acquainted with qualitative research
methodology, as a non-Samoan researcher, I had not been trained in the use of the Talanoa
method of interviewing, which may have been a more culturally appropriate way to pro-
ceed with our conversation. Researchers who use the Talanoa interview method are flex-
ible about the direction of the conversation and generous with time. The Talanoa (talk)
begins with things that might seem unimportant and it might take a while to discuss what
the researcher and the research participant are primarily there for. The discussion ends
when the Talanoa starts to revisit conversation topics that have already been covered in
the discussion (Vaioleti, 2006). While I did not purposefully use the Talanoa method of
interviewing, the interview naturally proceeded along similar lines. At times Gloria
would seemingly be off topic, yet this was merely the telling of Gloria’s story in a way
that was meaningful for her.
Gloria and I met as strangers in a waiting room where we discovered a shared interest
in post-graduate study. Gloria, intrigued with my research topic, asked to be interviewed
once ethics approval was granted. At her interview, months later, it was clear from
Gloria’s initially shy and quietly-spoken responses that her earlier enthusiasm to contrib-
ute to the research had waned a little. I was anxious to avoid causing her any more dis-
tress than she had already experienced, and I also wanted to respect what Gloria chose to
share with me, a virtual stranger. Before the interview began, I watched for tell-tale signs
of stress in Gloria’s language and posture. As we talked through the research paperwork
I noticed her fidgeting with a pen, then nervously re-arranging her belongings, before she
eventually confided that she doubted her ability to contribute anything of worth to the
project. I reassured her about the value of the information only she, as a subject matter
expert, could bring to my research.
The reassurance visibly reduced Gloria’s anxiety but her body language and intona-
tions continued to mirror her emotions throughout her interview. For instance, as she
talked about aspects of her life that she felt aggrieved about Gloria would tense her body,
her voice gathering in intensity, her attention fixed on me, perhaps watching for valida-
tion – or rejection – of what she was imparting. When she discussed topics that she was
saddened by, she would slump, shrinking into her seat, her voice soft, and her eyes dis-
tant, as she verbalised painful thoughts and feelings – some, she explained, she had kept
locked inside herself for decades.
Gloria’s cultural identity was very important to her; her childhood, her family life, and
her perceived ‘fit’ in the world were all discussed through this lens. Gloria talked of
always feeling like an outsider despite spending most of her life here. As a teenager,
Gloria lived in Samoa, but because of her New Zealand birth, she found she was not
entirely accepted there either. Uncomfortably situated between her two worlds, Gloria
also believed that her larger body-size marked her as ‘different’ in both cultures. Proud
282 Qualitative Research 20(3)

of her Samoan heritage, Gloria spoke of her frustration for conforming to the stereotypi-
cal image of a large-bodied Pasifika woman, confiding that she felt she was letting down
her nationality. Body-size is generally constructed as something individuals can and
should control, and Gloria’s supposed ‘failure’ to conform to an ‘appropriate’ size
appeared to distress her more than any other element of ‘not fitting in’.
There was a sense of grief threaded throughout Gloria’s narrative, but there was
laughter too, as Gloria found humour in re-telling some distressing events. Her good-
natured accounts were a testament to her resilience and strength, and when her stories of
stigmatising incidents included elements of mockery aimed at those who failed to see
past her body-size to the complex woman she is, I wondered who could blame her for
resisting in this small way. As the interview concluded, Gloria told me that the interview
had been cathartic for her, and that she hoped what she had shared would be helpful for
other large-bodied women. The distinctive term ‘cathartic’ was used by another partici-
pant in a later interview, which underscores the therapeutic value that some participants
placed on their research participation.
I felt a genuine closeness to Gloria, a woman I barely knew, as she prepared to leave.
Clearly, Gloria also felt that an emotional connection had formed as she reached out to
hug me. I was unsure what to do; my researcher identity was being abruptly breached by
a woman who was disinterested in the ethics of research, but instead was solely focused
on the emotional experience of her interview and the role that she believed I had played
in it. Disregarding ‘proper’ research conventions, I hugged her in return. On a personal
level, it felt ‘right’; the interview had been emotionally charged at times. To me, Gloria’s
interview demonstrated the importance of a reciprocal relationship between participant
and researcher, and emphasised the richness of data that can be collected when working
with individuals from vulnerable groups, and across cultures on topics that engage with
sensitive material.

Jonathan: gay men, religion, madness, and me

My research involves two different marginalised groups from two different qualitative
sociological studies. In the first project, my MA thesis, I interviewed 11 men who identi-
fied as both gay and Christian, most of whom attended evangelical and/or conservative
Christian congregations.3 In my current doctoral research, I am interviewing men and
women from varied ethnic and class backgrounds, all of whom have had ‘experiences
deemed religious’ (Taves, 2009), and all of whom have been diagnosed with bipolar
mental disorder.
LeFrançois et al. (2013) consider the term ‘mental disorder’ or ‘mental illness’ to be
both stigmatising and scientifically inaccurate. During interviews that I have undertaken,
and in subsequent analysis, I am conscious of how the words I use to talk about others’
lives might either add to past emotional stigma or engender a sense of empowerment for
participants. Because of this, I experimented with using the term ‘tāngata whai ora’, a
Māori phrase conveying the sense of ‘in search of wellness’. However, Māori notions of
health and wellness are more holistic than English language understandings, and include
dimensions of physical, emotional, social, and spiritual health (Rochford, 2004).
Particularly with the inclusion of a social and spiritual dimension for health, I felt this
Shaw et al. 283

might yield some insight missing from western views of mental health. Other scholars
use terms such as ‘mad’, or psychiatric ‘survivor’, but these terms are not commonly
used in New Zealand and may be somewhat controversial. However, some of my partici-
pants were not aware of alternatives to medicalised terminology, and the term tāngata
whai ora may not be familiar to those who do not speak Māori. Hence, I ended up having
to explain my terminology. Even people such as Sigmund, a mental health worker who
is au fait with the terminology, tended to use conventional terms such ‘mental illness’ and
mental health ‘consumer’. I got the impression that it was too tiring or time-consuming
to keep explaining himself, and so he settled for mainstream language.
In interviews, I found myself second-guessing. Aloud, I would speak of ‘mental ill-
ness’, but in my head, I would be simultaneously thinking, ‘I don’t like this term. I feel
I am reinforcing stigma by using it.’ This caused me to question the purpose of my
research – consciousness-raising? This conflict over terminology was illustrated in my
previous research, where all the men I interviewed used the word ‘gay’ in preference to
the medicalised term ‘homosexual’. This may not seem unusual, as the latter term has
dropped out of use since the 1970s. However, within conservative Christianity the term
homosexual is still common; it can be found in books, magazine articles, sermons, and
day-to-day conversation. I wager it is used as a form of othering: the medicalised term
homosexuality describes an identity which is aberrant, chosen, and thus potentially
changeable.
Since the passing of legislation like the Homosexual Law Reform Bill 1986, the
Human Rights Act 1993 and the Definition of Marriage Amendment Act 2013 in New
Zealand, gay men are not as socially vulnerable as they once were. It is important to note
that some New Zealand evangelical churches are welcoming to gay men; the men I inter-
viewed testified to this. However, they also described discrimination. Gay men often use
‘the closet’ as a term for concealing a facet of one’s identity. Sedgwick (1990: 68) com-
ments that even the ‘most openly gay people’ may still be ‘deliberately in the closet with
someone personally or economically or institutionally important to them’, which was the
case with some of those I interviewed. While most of the participants had ‘come out’ to
their congregations, Harry was one of two who was not. He spoke of subtle verbal stigma
from the pulpit:

It’s not as if [the pastor] would present a study of [being gay], but he would say things like
‘people with their rainbow flags, etc.’, and, you know, make a joke, or put them down in some
way.

When the time came for the interview, Harry asked to meet me at a mutual friend’s. I
located Harry via snowballing; he made a statement to the effect, ‘if you’re friends with
‘X’ then I can trust you’. Harry expressed that he found the interview itself therapeutic.
I felt profoundly honoured that people were willing to share their lives with me, as I do
not personally identify as gay or Christian; rather, I identify as heterosexual, male, and
agnostic. I also became conscious of my own privilege and began to question the power
I hold as a researcher, and conversely, what little power my participants hold.
Harry will not permit the Christian denomination he works for to be named. He fears
that if he were found out as gay, he would lose his job. Another participant, John, had lost
284 Qualitative Research 20(3)

executive positions in Christian organisations when he came out. In the interview, John
had come to terms with the losses of a decade ago, but it seemed he had lingering hurt.
His tone was mildly angry when he described a negative reaction with one church leader.
John is a professional with several postgraduate degrees, social status, and a long history
of charitable service; the loss of these positions was insulting as well as professionally
obstructive.
Discussing religious themes often brought to the surface strong emotions, both for
myself and my participants. The interviews reminded me of unresolved questions and
feelings related to my own Christian past. Through his psychotic episodes and subsequent
self-reflection, Sigmund developed a vision of a ‘universal spirituality’, which seemed to
be a sense of egalitarian unity among all people, holding the hope that all would be well
in this life, and beyond, despite current negative events. While describing this, he choked
up with tears, which appeared to be prompted by a complex mixture of joy and sorrow.
Other participants felt a mixture of perhaps more negative emotions. Writing about ‘men-
tal illness’ and spirituality, Ron said, ‘This brings up fear and confusion for me. Because
I haven’t processed all this, even after years I don’t really know what to make of it.’ This
lack of explanation for what he had been through was concerning for him. As well as joy,
it seemed to me that feelings of ‘unknowingness’ or uncertainty might be common for
those who had experienced spiritual moments during altered mental states. A mixture of
emotions was more common than a single overriding response.
During both research projects, I frequently worried whether I could truly understand
my participants despite not being one of them. Can I credibly function as both an insider
and an outsider? My participants know I was given a mental disorder diagnosis. But
would this help me understand them, or would it bias me in the way I interpreted and
wrote about their stories? Being able to represent participants truthfully is important to
me. LeFrançois et al. (2013: 14) contend that outsiders ‘who have escaped first-hand
psychiatric regulation and abuse’ can still undertake legitimate ‘mad research’. At times,
I want to embrace being a ‘mad scholar’, but I am likewise mindful of Foucault’s (1978)
insight that naming practices can produce negative powerful effects, and that academic
institutions may not consider madness an employable asset. This is a sensitive topic.
Academics are meant to be the critical conscience of society, and social scientists who
aim to stand beside their research participants often have high expectations for social
justice outcomes and concerns about whether those outcomes can be met. Yet partisan
identification with research participants entails risk. Insider research can have beneficial
outcomes for the researcher and the researched, but it can also generate a complex mix-
ture of positive and negative emotions. Mentoring and strategies to deal with issues
around self-disclosure and researcher-care during the research process could assist to
minimise some of the emotional and psychological risks inherent in this type of research.

Toni: interviewing offenders in New Zealand’s Alcohol and

Other Drug Treatment Courts
Interviewing offenders in New Zealand’s Alcohol and Other Drug Treatment Court
(AODTC) pilot presents numerous ethical challenges. In my research as a criminologist,
engaging multiple allegiances in this field was a key methodological challenge, and
Shaw et al. 285

created tensions for me as a critical researcher working with people who are shaped by
their involvement in the courts and criminal justice system.4 My prior knowledge of law
and court processes proved beneficial in enabling me to theorise legal processes in my
research and led me to question how we assume knowledge of the AODTCs’ governing
practices.
My primary research was conducted over seven months of fieldwork visits to two
AODTCs in Auckland, New Zealand. I conducted interviews with offenders who identi-
fied as male, female, and transgender, in addition to ‘in court’ observations of pre-court
meetings and afternoon hearings and ‘out of court’ observations which consisted of
events and conversations that occurred before court, during the court break, and after
court. I also undertook informal meetings with court workers, non-government organisa-
tion representatives and offenders’ families. In many ways, this research involved accom-
modating change as I went along. I faced many challenges to do with accessing offenders
involved in the AODTC pilot and adopting a researcher identity. My first point of contact
with court participants occurred during observations of the AODTC hearings. Much of
this rested upon the importance of juggling what the literature refers to as the insider/
outsider identity (Wakeman, 2014). Insider researchers are generally those who identify
with the study group and outsider researchers do not belong to the group under study
(Breen, 2007). In other words, my prior knowledge of law provided me with insider
knowledge of law and criminal justice processes such as governance and accountability,
evidence, and bail conditions. Thus, my insider knowledge helped me to gauge the
AODTC governance of addiction treatment. Smyth and Holian (2008) further suggest
that insider-researchers generally understand the politics of the institution under study
and how best to approach people.
Because I was conducting research in the relatively closed realm of the AODTC, my
researcher identity initially shielded me from any criticism or mistrust from the AODTC’s
members. I recognised that establishing trust was key to forming a positive relationship
between the courts and myself during observations. For instance, after conducting my
first AODTC observation, the judge involved called me back to her chambers for coffee
and a ‘power chat’ about the legitimacy of my research. However, the longer I spent in
the field, the more I was treated with suspicion. It was during the AODTC hearings and
observations that I encountered obvious scrutiny as to whom I was associating with in
and out of the courts. During this period, my position as a researcher was under scrutiny
by the AODTC Judges, their team members, and court workers.
During my pre-court observations, I was encouraged by the judges to sit amongst the
team and would be invited to share coffee during the break. In other words, I would be
engaging with the judge, police, legal counsel and case managers under observation.
This left me feeling sure that the aim of the judge was for me to feel as if I was ‘part of
the AODTC team’, a process that started to feature as part of my identity during the ‘in
court’ observations. However, once I changed my position six months later to interview
offenders, my movements in and directly outside of the AODTC were frequently shad-
owed and ‘watched’ by court workers. From that point, I received pat downs and bag
searches from court security, averaging once a day, something I had not previously expe-
rienced during the months I had been conducting ‘in court’ observations. This presented
me with two challenges. The first was around negotiating security, and the second
286 Qualitative Research 20(3)

involved establishing rapport with AODTC offenders. My PhD supervisor suggested that
I wear a name badge to counteract any security response. While this seemed like a sensi-
ble option, I instead opted to immerse myself as an ‘involved researcher’, one who is
connected to her participants and deals with challenges as they arise, such as personal
safety.
This required time spent ‘out of court’, sitting outside the court on an average of six
hours a day. In this regard, my attire of t-shirt, jeans, sneakers and backpack, and my
open-minded attitude, allowed me to fit more in with offenders, who dressed similarly.
This time also allowed me to identify individuals and explain my research. Considering
the challenges, I realised that both my position and appearance had a direct impact on my
research. I learnt to negotiate my position in such a way that did not breach any ethical
agreement to observe either party (Maher, 2002). This is also a requirement of critical
ethnography (Thomas, 1993).
Ethically, the University Human Ethics Committee and Ministry of Justice mandate
required me to interview offenders in a public space. The rationale behind this was to
ensure the safety of myself and participants. This meant that interviews were either con-
ducted in a room at the courts, in a café, a courtyard or on a park bench. Fundamentally,
I found that interviewing came down to what the interviewee was comfortable with.
However, the realities of the interviews resulted in surprising and confronting situations
and raised unanticipated ethical and methodological issues. From time-to-time AODTC
participants would abscond from the programme, thereby breaching their bail condi-
tions. For instance, by coincidence, I found myself sitting on the same train as an AODTC
participant on the run, discussing his options. As a researcher, I considered that I may
come across these situations and decided to handle this one by adopting the principles of
anonymity. If I saw participants outside the AODTC environment, I would not report
them to the relevant authorities. In this regard, I assured participants, ‘what we discuss
stays in this room and will not affect your case’. Gaining their trust to tell their stories
was a challenge in-itself. I took on the role of ‘involved outsider’, assuring interviewees
that I was an academic and not part of the AODTCs (Hermann, 2001). That is not to say
that all participants trusted me. Many had learning disabilities, had experienced violence,
and criminal justice errors. It became difficult for me to not experience the stress and
emotions my research participants conveyed.
My experiences in the field often left me feeling confused, bemused, shocked and
withdrawn, even potentially risking my findings. Halfway through the fieldwork I found
myself exhausted with what I perceived as a lack of fairness in the treatment many of the
participants had received. I also found the participant’s stories emotionally challenging.
In part, as discussed by ethnographers who undertake multi-sited fieldwork (Hage,
2005), the exhaustion was a result of regular return travel between Wellington and
Auckland, and inner-city bus and train travel; a process that occurred for two to three
days at a time. I faced days during the latter half of the research process when I felt over-
whelmingly tired and in need of sleep. I wondered whether I was doing enough for the
participants.
The emotionality of the research was not lost on me, either personally and academi-
cally. It gave me a sense of my privileged status as a researcher. Since my research in the
AODTCs was the first of its kind in New Zealand, I was aware that my presence could
Shaw et al. 287

affect others and decided, reflexively, to acknowledge my emotions to allow for the
avoidance of biases (Hammersley and Atkinson, 2007). This provided me with the
method to articulate and sustain a critical framework for thinking through the research.
As a research tool, reflexivity enabled me to manage the blurring of the distinction
between being an involved critical researcher and staying neutral in the courts, a blurring
that might be a central feature of conducting fieldwork in a place of power production
such as New Zealand’s AODTCs (Lavanchy, 2013).

Rhonda: organ transplantation, sensitive data and emotion

From 2007 to 2013 I conducted a large interview-based and fieldwork study investigat-
ing perceptions of organ donation and transplantation processes in New Zealand. The
study set out to investigate how the respective roles, beliefs and understandings of
research participants around human embodiment, personhood and identity shape and
frame their attitudes toward organ transfer. To talk about the place of emotion in my
research, I draw on field notes taken during and after interviews with 24 organ and tissue
recipients and nine members of donor families. The interviews, comprising 1 to 2 and a
half hours duration, were generally narrative in style. The natural pattern for organ and
tissue recipients was to begin with an explanation of illness onset and then discuss physi-
cal symptoms, complications, mishaps and problems before broaching social, cultural
and ethical issues. Donor family members also began their interviews by discussing ill-
ness onset associated with their loved one.
Many of my participants felt strongly about communicating their stories to various
audiences to increase awareness and understanding of organ donation and transplanta-
tion. A recurring theme, particularly for transplant recipients, concerned difficulties
around reciprocation. Participants found that expressing gratitude to donors and donor
families was very difficult, not only because anonymity protocol prohibits unmediated
relations between donors, donor families, and recipients in the New Zealand context, but
because recipients feel that it is impossible to repay, or pay forward, the gifted organ. As
Sharp (2007) notes, transplant recipients are excluded as future organ donors due to
long-term use of immunosuppressant medication. Drugs like prednisone, for instance,
make the possibility of donating tissue unlikely due to the development of on-going skin
cancers. Commenting on organ transfer in the United States, Sharp suggests that recipi-
ents may find solace in repaying the gift by memorialising donors.
For participants in my study, reciprocation often took the form of a communicative act
of storytelling. In the case of donor family members, the act of storytelling verbally rein-
forced their decision to donate their loved one’s body tissues. My participants not only
re-created their own moral sense of self through narration but found that telling their
story was other-oriented. The interviews conveyed more emotion than might be expected
from a typical social research-oriented interview and did not always conform to the
norms of standardised interviewing. Rather, they were accompanied by what Smart
(2009) calls ‘intangibles’; emotion, body language and the material facts of participant
and researcher embodiment. While social researchers increasingly allude to the power
asymmetry in qualitative research interviews, and the control researchers have over
the final written product of the interview due to framing the data through their own
288 Qualitative Research 20(3)

interpretative lens, they often leave intangibles out of the picture. These aspects of the
research process are difficult to translate into written text, and there are often profes-
sional consequences for attempting to do so, resulting in ‘intangibles’ being frequently
overlooked. The traditional view of the social researcher is that they should maintain
neutrality in an interview situation in order to gain relevant information about the study
phenomena. In this view, failure to work around emotions may distort perception and
distract the researcher from her task. Smart (2009: 301) claims that the decision the
social researcher makes is whether to make these intimate intersubjective details public
knowledge, in the interests of ‘attempting to capture or realize a fuller messier concep-
tion of social and personal life.’
Tears were shed by participants and me in well over half the interviews for my study.
Expressing emotion was not uncommon for both male and female health professionals
interviewed in the larger study; particularly those who worked in Intensive Care Units
with prospective donor families (Shaw, 2010). Although I was prepared for sensitivity
when interviewing bereaved relatives of organ donors, I had not anticipated my own
tears or that talking to organ and tissue recipients and donor families about their experi-
ences would elicit such an outpouring of emotion. In short, I was unprepared for
the emotionality of participants’ talk around the issues of gratitude, reciprocity, and
donor-recipient connection. Not only was their talk deeply meaningful for them, it also
affected me.
Certainly, my study participants could be described as vulnerable. Having said that, it
is precisely their vulnerability and their desire to publicly articulate their experiences that
makes this narrativising empowering for them and gives their stories credibility. In one
conversation, Leda, a lung recipient, who talked to me about preparing for her transplan-
tation operation told me how preoccupied she was with thoughts about the donor family
as she travelled to the hospital transplantation unit. Unprompted, Leda then went on to
describe writing a thank you letter to her donor family, which she had written three sepa-
rate times and thrown away. Leda’s story, which touched on guilt and the burden of grati-
tude, repeated a pattern that was noticeable in other interviews with transplantation
recipients pertaining to the difficulty of saying thank you to the donor family. I was
moved to tears and told Leda that some people say they write the letter over and over and
some cannot even bring themselves to write the letter in the first instance. Leda then
comforted me as we talked about the transplantation event as marking a new life tinged
by deep sadness, made complicated by the failure of language to adequately convey the
emotionality of the transplantation experience.
In addition to discussing the difficult conversation around thanking the donor family,
the shared experience of the researcher and Leda regarding recipient suffering in this
interview created a temporary role reversal between us, as Leda showed genuine concern
and empathy for my feelings. The kind of counter-transference we see in this interview
is not psychotherapeutic. Rather, it is akin to Morse and Mitcham’s (1997) description of
‘compathy’ as a shared feeling of distress or pain arising from observing, listening to,
hearing, reading about, or remembering the distressing experiences of others.
Although there is arguably a fine line between research interviewing and therapy, it
need not be the default option to ‘work around’ painful emotion in interview situations,
and we should not view emotional engagement with interviewees as a sign of moral or
Shaw et al. 289

professional failure. Morse et al. (2008: 211) point out that to make a judgement call to
stop an interview because an interviewee shows emotion could be perceived as ‘a rejec-
tion of the participant and his or her feelings’. My own view is that not to respond with
understanding and compassion in such situations could be construed as a deficit on the
part of the researcher to share human vulnerability.
The emotionality of this interview-based research deviates from traditional interview
norms equating interviewer responsibility with detachment and reserve, but in ways that
ultimately enhanced my understanding of participants’ experiences to enrich knowledge
of the topic. I have written about emotional labour, reflexivity, and empathic social sci-
ence previously (Shaw, 2011), but I have not commented on the difficulties of engaging
in sensitive research without any institutional counselling or peer support. While my
participants were able to talk post-interview with various others, including counsellors,
debriefing was not an option for the researcher. Regardless of my own comfort with
‘intangibles’, support for experienced researchers who undertake emotionally taxing
sensitive research is important.

Concluding remarks
The snapshot accounts above draw on research experiences from four different studies
that deal with questions of ethical and emotional risk for the researchers themselves, as
well as risks associated with participating in studies for research participants. At our
institution, the Human Ethics Committee places high priority on minimising risk to
researchers, especially emerging researchers undertaking postgraduate study. It bears
noting that one of our cohort withdrew their contribution to this article because they felt
that the risks of writing about insider involvement with their research community would
outweigh the benefits. Like Jonathan, they expressed concern about limiting their pros-
pects for future employment opportunities.
While there are good reasons for ensuring researcher safety and well-being, formal
ethical clearance procedures can sometimes result in imposing restrictions on research
projects. Hammersley and Traianou (2012) have argued that this has potential to inad-
vertently undermine research practices. Mitigating risk to research participants, research-
ers, and the researchers’ institution is imperative. Nevertheless, we want to emphasise
that risk is a common feature of research engagement and that curtailing or avoiding
studies involving sensitive topics may prevent injury, but would also silence people’s
accounts of their experiences, jeopardise skill acquisition for novice researchers, and
thereby limit the pursuit of disciplinary knowledge. Taking the view that vulnerability is
a universal feature of the human condition, we think that ethical, emotional and psycho-
logical risk is a normal part of doing research with human participants, who voluntarily
and openly disclose information about their lives.
As researchers, we affect and are affected by the stories our research participants tell.
The key to dealing with emotional fall-out from research engagement is to acknowledge
that it happens and ensure strategies for proactively managing such situations. To this
end, we recommend social science research ethics training for postgraduate students.
Ideally, this would entail mentoring and peer support. One suggestion is to match new
postgraduate researchers to sensitive topics with researchers who have already
290 Qualitative Research 20(3)

completed their data collection and analysis. Being able to discuss potential risks to
both participants and researchers prior to embarking on fieldwork, as well as being able
to dialogue hypothetical situations in a classroom setting, could help to avert potential
problems. More research needs to be conducted on the researcher’s position when
working with vulnerable groups. In our experience, tensions during fieldwork can be
downplayed or covered up when communicating research results to fellow students and
supervisors, and this can have a negative cumulative effect on the researcher. Regular
debriefing sessions with mentors, where possible from other programmes or schools
within the same institution or from different institutions for postgraduate students, and
for experienced researchers, studying sensitive topics is crucial.
Another common area of concern identified in this article pertains to meeting our own
expectations, and those of our research participants, regarding the purpose and outcomes
of research. Social scientists often have high hopes for the goals of their research and its
social change implications. In our discussion, we present a modest account of justice in
terms of the recognition of participants’ identities and rights as autonomous subjects and
an aspiration to improve their access to resources to enhance their lives. We agree that
social scientists do not have a mandate to guarantee justice, but we do have a responsibil-
ity to our research participants who have consented to let us into their worlds, to treat
them with respect and understanding and to ensure that the results of our research are
appropriately disseminated. Notwithstanding our responsibility to produce sound knowl-
edge, the effect the interview may have on a participant’s life post-interview should be
prioritised over the researcher’s desire to ‘get the data’. As such, the case studies dis-
cussed in this article underscore the necessity for researchers working with vulnerable
groups about sensitive topics to approach data collection with empathy and care.
Finally, we suggest that researcher positionality and the researcher’s status as an
insider/outsider has implications for the topics we choose to study, the way we do
research and engage with our research participants, how we analyse our data, and how
we communicate our findings. The view we take in this article is that there is no right or
wrong way to conduct sensitive participatory research. Rather, researchers should be free
to choose the method that is most consistent with their own values; the caveat of qualita-
tive research being that one’s values are invariably relational, and needs must account for
the participants one is studying.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship,
and/or publication of this article.

Funding
The author(s) received no financial support for the research, authorship, and/or publication of this
article.

Notes
1. Not all New Zealanders of settler origin self-identify as Pākehā. Researchers who do,
acknowledge their historical relationship to Māori and the importance of cultural sensitivity
in research praxis.
Shaw et al. 291

2. While all the authors in this article undertook their doctoral research as mature students, one
of us is the supervisor of two of the authors.
3. Churches attended by these interviewees included Baptist, Anglican, Brethren, Assemblies of
God, and Salvation Army.
4. The AODTC is designed to supervise the treatment of offenders whose offending is driven by
alcohol and other drug addiction. It deals with offenders who have pleaded guilty and are fac-
ing a term of imprisonment of up to three years for any offence, with the exception of serious
violence, sexual offending, and arson (Ministry of Justice, 2014). Available at: https://www
.justice.govt.nz/courts/criminal/therapeutic-courts/

References
Breen LJ (2007) The researcher ‘in the middle’: negotiating the insider/outsider dichotomy. The
Australian Community Psychologist 19(1): 163–174.
Carroll K (2012) Infertile? The emotional labour of sensitive and feminist research methodologies.
Qualitative Research 13(5): 546–561.
Dickson-Swift V, James EL, Kippen S and Liamputtong P (2008) Risk to researchers in qualita-
tive research on sensitive topics: issues and strategies. Qualitative Health Research 18(1):
133–144.
Dickson-Swift V, James EL, Kippen S and Liamputtong P (2009) Researching sensitive topics:
qualitative research as emotion work. Qualitative Research 9(1): 61–79.
Fitzpatrick P and Olson RE (2015) A rough road map to reflexivity in qualitative research into
emotions. Emotion Review 7(1): 49–54.
Foucault M (1978) The History of Sexuality: Volume 1. Hurley R (trans.). London: Penguin.
Guillemin M and Gillam L (2004) Ethics, reflexivity, and ‘ethically important moments’ in
research. Qualitative Inquiry 10(2): 261–280.
Hage G (2005) A not so multi-sited ethnography of a not so imagined community. Anthropological
Theory 5(40): 463–475.
Hammersley M (2000) Taking Sides in Social Research: Essays on Partisanship and Bias. London:
Routledge.
Hammersley M and Traianou A (2012) Ethics in Qualitative Research: Controversies and
Contexts. London: SAGE.
Hammersley M and Atkinson P (2007) Ethnography: Principles in Practice (third edition).
London: Routledge.
Hermann T (2001) The impermeable identity wall: the study of violent conflict by ‘insiders’ and
‘outsiders’. In: Smyth M and Robinson G (eds) Researching Violently Divided Societies:
Ethical and Methodological Issues. London: Pluto Press.
Hudson M, Milne M, Reynolds P, Russell K and Smith B (2010) Te Ara Tika: Guidelines for
Māori Research Ethics: A Framework for Researchers and Ethics Committee Members.
Auckland: Health Research Council of New Zealand.
Lavanchy A (2013) Dissonant alignments: the ethics and politics of researching state institutions.
Current Sociology 61(5/6): 677–692.
Lee RM and Renzetti CM (1990) The problems of researching sensitive topics: an overview and
introduction. American Behavioral Scientist 33(5): 510–528.
LeFrançois B, Menzies R and Reaume G (2013) Introducing mad studies. In: LeFrançois B,
Menzies R and Reaume G (eds) Mad Matters: A Critical Reader in Canadian Mad Studies.
Toronto: Canadian Scholars’ Press, 1–22.
Levine C, Faden R, Grady C, Hammerschmidt D, Eckenwiler L and Sugarman J (2004) The limita-
tions of ‘vulnerability’ as a protection for human research participants. The American Journal
of Bioethics 4(3): 44–49.
292 Qualitative Research 20(3)

Maher L (2002) Don’t leave us this way: ethnography and injecting drug use in the age of AIDS.
International Journal of Drug Policy 13(4): 311–325.
Ministry of Justice (2014) Alcohol and Other Drug Treatment Court, Te Whare Whakapiki Wairua
Handbook, Version 2. Wellington, New Zealand: Ministry of Justice.
Morse JM and Mitcham C (1997) Compathy: the contagion of physical distress. Journal of
Advanced Nursing 26(4): 649–657.
Morse JM, Niehaus L, Varnhagen S, Austin W and McIntosh M (2008) Qualitative researchers’
conceptualizations of the risks inherent in qualitative interviews. In: Denzin NK and Giardina
MD (eds) Qualitative Inquiry and the Politics of Evidence. Left Coast Press Inc.: Walnut
Creek, CA, 195–217.
Rochford T (2004) Whare tapa wha: a Māori model of a unified theory of health. The Journal of
Primary Prevention 25(1): 41–57.
Rogers WA, Mackenzie C and Dodds S (2012) Why bioethics needs a concept of vulnerability.
International Journal of Feminist Approaches to Bioethics 5(2): 11–38.
Sedgwick EK (1990) Epistemology of the Closet. Berkeley: University of California Press.
Sharp L (2007) Bodies, commodities, and biotechnologies: death, mourning, and scientific desire
in the realm of human organ transfer. New York: Columbia University Press.
Shaw RM (2010) Perceptions of the gift relationship: views of intensivists and donor and recipient
coordinators. Social Science & Medicine 70(4): 609–615.
Shaw RM (2011) The ethical risks of curtailing emotion in social science research: the case of
organ transfer. Health Sociology Review 20(1): 59–70.
Smart C (2009) Shifting horizons: reflections on qualitative methods. Feminist Theory 10(3):
295–308.
Smyth A and Holian R (2008) Credibility issues in research from within organisations. In: Sikes
P and Potts A (eds) Researching Education from the Inside. New York: Taylor & Francis,
33–47.
Taves A (2009) Religious Experience Reconsidered: A Building Block Approach to the Study of
Religion and Other Special Things. Princeton: Princeton University Press.
Ten Have H (2014) The principle of vulnerability in the UNESCO declaration on bioethics and
human rights. In: Tham J, Garcia A and Miranda G (eds) Religious Perspectives on Human
Vulnerability in Bioethics. Dordrecht: Springer.
Ten Have H (2015) Respect for human vulnerability: the emergence of a new principle in bioeth-
ics. Bioethical Inquiry 12(3): 395–408.
Thomas J (ed.) (1993) Doing Critical Ethnography. Newbury Park, CA: SAGE.
Vaioleti TM (2006) Talanoa research methodology: a developing position on Pacific research.
Waikato Journal of Education 12: 21–34.

Author biographies
Rhonda M. Shaw is an Associate Professor of Sociology at Victoria University of Wellington, New
Zealand. Her research interests include the sociology of morality and ethics and empirical research
on assisted human reproduction, breastmilk sharing, and organ donation and transplantation.
Rhonda recently edited Bioethics Beyond Altruism: Donating & Transforming Human Materials
(2017) published by Palgrave Macmillan.
Julie Howe draws from an interview undertaken as part of her PhD research thesis at Victoria
University of Wellington, Existing While Fat: A Qualitative Study of the Everyday Life of Fat
Women in New Zealand for this article. Julie’s primary research interest is in Fat Studies, and in
embodiment more generally. Her PhD research began with her 2012 Honours dissertation where
she used feminist standpoint theory to examine the lived experience of fat women in the New
Zealand context.
Shaw et al. 293

Jonathan Beazer has carried out four years of research on the sociology of madness and mental
health towards a PhD at Victoria University of Wellington, New Zealand. He has delivered under-
graduate lectures on mental health, is a trustee of Kites, a peer led mental health organisation, and
has an article on Mad Pride and depression published in Asylum Magazine.
Toni Carr is a PhD Candidate in criminology, and Research Fellow at the School of Law Victoria
University of Wellington. Toni’s research interests are in the areas of criminal justice, specialist
courts, human rights, socio-legal studies. Her current research includes working on a project inves-
tigating the impact of the Bill of Rights Act (1990) on New Zealand police practices and
procedure.