Date: 29-03-2019

Batch: BBA 33 QUALITATIVE METHODS

CASE STUDY

Methodological and ethical challenges in qualitative research with young

people
Introduction

Ethical dilemmas are unavoidable in the research setting. Sometimes we can pre-empt them,
in which case protocols are likely to be in place and clear paths can be followed when they do
arise. At other times they emerge spontaneously and force us to think about events we did not
foresee. These situations are often accompanied by time pressures, lack of information,
organisational constraints, emotive reactions and differing opinions about the right course of
action. Qualitative health research, particularly with young people, is uniquely vulnerable to
these types of spontaneous and unexpected ethical dilemmas (Mishna, Antle, & Regehr,
2004). In this paper we consider the specific ethical complexities associated with qualitative
research involving young people, exploring the factors that contribute to the implicit risks
associated with such research endeavours. We present a case in which, as qualitative
researchers working with young people in a health context, we were faced with a complex
ethical dilemma. We explore the case in detail and analyse the characteristics that combined
to make it ethically fraught. Detailed case analysis is a valuable tool for thinking about ethical
dilemmas in research. It provides an opportunity to carefully explore the factors that
combined to create the ethical challenge, with the added benefit of time to think more deeply
about the issues and implications. Transparency about ethical dilemmas in research also helps
to create understanding and awareness for other researchers undertaking similar projects.
Guillemin and Gillam (2006) write in-depth about the value of personal stories forenhancing
what they term ‘ethical mindfulness’. Ethical mindfulness, they explain, is more complex
than simply ethical decisionmaking. Ethical mindfulness involves the recognition of ethically
important moments, giving credence to the feeling of being ‘uncomfortable’ about an event,
being able to articulate what makes something an ethical matter, being reflexive and having
courage (p31). Guillemin and Gillam argue that ethics is grey and there is almost never an
obvious right or wrong answer. The goal, instead, is to create a culture of ethical mindfulness
which then leads to ethical practice. They explain that one of the most effective tools for
facilitating ethical mindfulness is telling and listening to personal stories and then considering
these in-depth using a combination of key ethical principles and ‘trigger questions’ (p36).
Boman and Jevne (2000) provide a detailed personal account of being charged with an ethical
violation as part of a qualitative research project. They highlight the value of sharing such
accounts of the challenges associated with qualitative research, specifically arguing for
continued dialogue amongst researchers so that we may collectively learn from one another.
They note that ‘by the time research is presented or written up, all the perils and pitfalls of the
research experience have been omitted or smoothed out in a tidy report outlining what went
right rather than what went wrong in a research endeavour’ (p547). Citing Punch (1994),
Boman and Jevne explain that the research community has been called upon to ‘tell stories
about actions and events that reveal the stress, deep personal involvement, role conflicts,
physical and mental effort and discomfort of qualitative research.’ Boman and Jevne argue
that if we are to advance our understanding about what constitutes ethical and unethical
behaviour in the research setting, we must share our stories about the dilemmas that arise.
This challenge, to share the untidy stories of qualitative research, is slowly being heard and
taken up. Chaitin (2003) provides a detailed personal account of the ethical challenges faced
working as a qualitative researcher on aspects on the PalestinianIsraeli conflict. Her in-depth
account provides a rare insight into the types of difficulties that are so often left out of the
polished, final accounts of research studies that we read and hear. Ensign (2003) writes of the
ethical issues associated with qualitative health research with homeless youth. She shares
insights about her personal strategies for managing these difficulties in her own work. Walsh,
Hewson, Shier, and Morales (2008) also take up the challenge, exploring the ethical
dilemmas that arose for them when conducting community-based participatory research.
MacDonald and Greggans (2008) too share their experiences of the chaos and complexity
that occurs when conducting interviews in participants’ homes. They note that published
articles tend to sanitise the messiness of real world qualitative research, and they aim to
counter this trend by providing honest and transparent accounts through the use of case-
studies. Shaughnessy, Beidler, Gibbs, and Michael (2007) take a similar approach, drawing
on dilemmas from their own research experience and considering the difficulties raised by
these. In sharing the case from our own study here, we aim to build on this tradition of using
personal accounts of ethical dilemmas in order to provoke contemplation and discussion of
the more ambiguous, less apparent challenges of qualitative research with young people. We
do this with the aim of facilitating ethical mindfulness and thus, ultimately, ethical research
practice.
The optimising pathways research project

The case presented in this paper occurred as part of a research project called Optimising
Pathways. Optimising Pathways focuses on young people with chronic health conditions,
exploring the ways in which young people take on more responsibility for their health care as
they mature through adolescence (Sawyer, Drew, & Duncan, 2007). The project was
conducted as part of the chronic illness research program at the Centre for Adolescent Health
at the Royal Children’s Hospital in Melbourne and had ethics approval from the Royal
Children’s Hospital Human Research Ethics Committee. Data collection occurred between
2006 and 2008. Optimising Pathways entailed several research components and mixed
research methodologies. Here we focus solely on one component of the research
methodology; in-depth interviews with young people aged between 10 and 18 years who had
one of four chronic conditions: asthma, diabetes, cystic fibrosis or leukaemia (ALL).
Simultaneous yet separate interviews were also conducted with a parent of each young
person. Consent was obtained from both young people and their parents, yet individual
interviews were undertaken confidentially to foster space for candid and unconstrained
expression. All participants were informed that the information they provided would not be
shared with any of their family members or health professionals responsible for their care.
Interviews focused on participants’ understandings of the chronic condition, patterns of care
that had developed in the family, how strictly the family followed advice provided by health
professionals, the division of responsibility regarding health care in the home, influences on
patterns of care from outside the family environment, and perceptions about how any of these
elements may change in the future. Our research design was informed by literature from the
sociology of childhood and sociology of youth which 1) promotes understanding of the
culturally constructed character of childhood and youth as periods of social existence, 2)
emphasizes the importance of young peoples’ competence as social actors, and 3) highlights
the need to be sensitive to the way that relationships between adults and young people are
influenced by power differentials (Corsaro, 2005; Matthews, 2007). From this perspective
children and youth are understood to play a significant role in both shaping and being shaped
by the social world (Matthews, 2007; Mayall, 2002; Punch, 2002). Consistent with this
position is that qualitative researchers seek detailed information from young people rather
than seeking information about young people (Litt, 2003; Matthews, 2007). Finding
appropriate terminology for describing our ‘patient’ sample group is challenging. While
legally in Australia they may be considered children as they are not yet 18 years of age, it
could be infantilizing to call any one of our participants a child. Some consider the words
youth and adolescent are similarly problematic because they are coupled with the notion of a
‘‘presocial self that will emerge under the right conditions’’ (Wyn & White, 1997, p12). A
more neutral term is young people (White & Wyn, 2004), and this is our preference.

Adherence to medical regimens: issues with young people

Issues of poor adherence are not limited to young people. Indeed, ‘the average adherence to
medical regimens in individuals with chronic disease across all ages is only w 50%’ (Jones &
Kelly, 2008, p750). Clinical challenges associated with poor adherence are widely
acknowledged (Rand & Sevick, 2000). However, therapeutic management is particularly
challenging in relation to young people with chronic conditions, as it is at this time that a shift
occurs from parent dominated care to young person centred self-management. The issue of
adherence with medication is central to this transition. Key influences on medication
adherence in young people have been shown to include: type of chronic condition, increasing
age, gender, peer influences, socio-economic status, cultural factors, nature of parental
involvement, decreased family functioning, family conflict, and mental health co morbidities
(Jaquin & Levine, 2008; Jones & Kelly, 2008; Korbel, Wiebe, & Berg, 2007). Additionally,
knowledge about a health condition does not necessarily equate to increased adherence
(McQuaid, Sheryl, Klein, & Fritz, 2003). While environmental influences as well as socio-
cultural and personal characteristics are important, normal processes of adolescent
development such as resisting adult authority and developing increased independence can
also complicate adherence behaviours. There are recognised approaches that promote
therapeutic adherence in young people, and avenues available for clinically measuring
adherence with certain medications, yet major challenges still remain in achieving optimal
levels of adherence and ensuring the development of adequate, independent chronic condition
self-management practices to promote positive health outcomes. This was, in part, the
impetus behind the Optimising Pathways study.

The case of Toby

We have taken steps to deliberately disguise identifying features in order to protect the
confidentiality of those involved in the case of Toby. We have also deliberately chosen to
present the case in first person. As Guillemin and Gillam (2006) note, ‘the personal is always
present and must be explicitly acknowledged and understood if health care practice is to be
ethical’ (p33). Such approaches, although common in qualitative research, are in fact rare in
the health care setting, where traditionally cases are presented in the passive voice and
objectivity is the goal (Guillemin & Gillam, 2006). Presenting ethical dilemmas in first
person is a risky business, making the story-teller vulnerable and melding the personal with
the professional. However, the opportunities for ethical insight and thus ethical mindfulness
are arguably greater (Guillemin & Gillam, 2006). The case we discuss is presented by RD,
who interviewed Toby. Subsequent deliberations and decisions were shared between the
research team (RD, JH, SD & SS). RD, a postdoctoral research fellow, was 30 years of age at
the time she interviewed Toby. She is a qualitative researcher who has performed a range of
interviews with young people about sensitive topics as part of her previous research. She also
has postgraduate training in both counselling and bioethics. Although she was the youngest
member of our research team, this is not why she was chosen to interview Toby. Three
members of the research team (RD, SD & JH) rotated roles as part of the Optimising
Pathways project, meaning that with some families RD interviewed parents and with others
she interviewed young people. I travelled by car to interview Toby at his home one evening,
with my research colleague (JH) accompanying me to interview Toby’s mother. In some
homes it was difficult to find two private spaces where we would not hear one another and
this was one of those times. I ended up sitting in Toby’s bedroom on a chair to conduct the
interview, while he sat on his bed. At the time of our interview, Toby was nearly 16 years old
and had been recruited to take part in the project because he had a chronic health condition.
At the beginning of my interview with Toby I explained that what we spoke about would be
confidential. I told him that this meant I would not be sharing anything with his parents or his
doctors and it was only myself and the other members of the research team who would know
what was said. I also explained that any material used later in publications or presentations
would be de-identified so no one would know it came from him. I told him that if there were
any questions he did not want to answer that this was fine and that he could stop the interview
at any time. About a third of the way into our interview, Toby clarified the level of
confidentiality with me again. He specifically asked ‘‘Is my mum going to hear this or not?’’
and I responded with a promise that his mother would not be able to listen to the interview.
As the interview unfolded, I enquired about aspects of Toby’s daily health care activities,
including his medication regime. He explained that he was not on daily medication for his
chronic condition, but had medication that he could take when he felt he needed it. This was
quite common for the chronic condition Toby had and fitted well with what I already knew.
However, Toby then told me he was currently suffering from an additional health complaint.
This additional health complaint was not common and Toby was the first person I had
interviewed who had mentioned this. Because one of the aims of the interviews was to
explore young peoples’ understandings and perceptions about their health, I asked Toby to
describe the additional health complaint in detail, which he did. This description was also
helpful personally as at that point I knew little about it. Toby then informed me that this
additional health complaint required a daily dose of additional, different medication. Once
again I prompted Toby in order to explore his understandings and perceptions around this
additional medication: again, my knowledge was limited. Once more, this further inquiry
informed my own ‘on-the-spot’ understanding of the situation he was describing. Toby
explained that there were a range of significant side-effects associated with the additional
medication. Not being medically trained, I was unsure about the accuracy of the information
Toby had provided. I went on to ask Toby about his adherence to the medications he had
been prescribed and, specifically, what types of factors got in the way of him following his
doctor’s recommended medication regime. Toby then disclosed to me that he was not taking
his additional medication daily. He explained that he was experimenting with this medication,
to see how often he actually needed to take it, by purposely missing a dose a couple of nights
a week and then monitoring his symptoms. He also explained that this experiment was
motivated by concern about the side-effects of the additional medication and a desire to avoid
these. I enquired about how his experiment was going and he explained that his symptoms
had been ok and that he had therefore concluded he did not require the medication as often as
his doctor had suggested, which was daily. I then asked Toby why he felt reluctant to share
this information with his parents or his doctor and he stated that he wanted to avoid them
getting ‘grumpy’ at him. I had no immediate knowledge of what the health implications were
of not taking this additional medication regularly and therefore, in contrast to disclosures I
had heard about poor adherence in previous interviews, I felt a distinct level of discomfort
about the information Toby had shared. Despite my unease, I did not enquire any further
about Toby’s ‘experiment’. I was worried that if I did, Toby may feel ‘judged’ and would
subsequently choose to be less honest with me. We completed the interview and joined
Toby’s mother and my co-researcher for the final closing remarks. Although there were
several earlier phases to the Optimising Pathways project, the interviews constituted the final
phase. At the end of the interviews we therefore thanked both Toby and his mother for their
time and participation, made sure they had our contact details, and left with no plans to
contact them again.
The context of ethical complexity in qualitative research with young people

Before thinking specifically about the case of Toby and the ethical challenges that it raised, it
is useful to take a step back and consider the nature of both qualitative research and research
with young participants more generally in order to explore why these research endeavours
might be more susceptible to ethical dilemmas. What is it about qualitative research with
young participants that creates greater scope for ethical risk?

Scope for ethical risk in qualitative research

Qualitative research, by virtue of its very strengths, can expose researchers and participants to
a range of ethical risks (Mishna et al., 2004). In her discussion about ethical principles
associated with qualitative research, Morse (2007) challenges the perception that qualitative
research is safer for participants than clinical drug trials or experimental research. She states
that, as qualitative researchers, we are privy to ‘intimate information and observations and
our participants are vulnerable and often disempowered’ (p1003). This, she argues, creates
great scope for ethical risk. It is not possible to accurately predict all potential responses in
qualitative research. Similarly, it is not possible to anticipate each potential question or
prompt that will be used. As researchers, we choose qualitative methods when we are unsure
of what answers to expect, when we want to maintain an open realm of response and when
we are hoping for the emergence of new understandings and theories (Pope & Mays, 1995;
Richards & Schwartz, 2002). In other words, qualitative research is particularly amenable to
inductive approaches. It is not hard then to imagine situations in which we are the recipients
of unsought information that falls outside the scope of what we expected. As Pope and Mays
(1995) remind us, health care deals with people and people are more complex than the
subjects of natural science. When providing informed consent, participants cannot be
supplied with an exhaustive list of possible questions. At times, they may therefore be
surprised or caught off guard. Similarly, researchers are required to make decisions
throughout the research process regarding what is ethically appropriate to enquire about.
They must spontaneously and repeatedly reflect on the qualitative process as it unfolds in real
time. Researchers may therefore also be surprised or caught off guard, finding themselves in
situations they did not foresee and do not have clear processes in place to manage. This
increases the ethical complexity of qualitative methods. The nature of the relationship
between researchers and participants in qualitative research is particularly amenable to
disclosure of sensitive information. Mishna et al. (2004, p.452) argue that ‘‘the nature of the
relationship between researcher and participant.adds an extra dimension of risk when
conducting qualitative research’’. Rice and Ezzy (1999) also note that, during in-depth
interviews specifically, participants are away from their peers and family and are therefore
more likely to disclose sensitive information to the researcher. This potential for disclosure
can be further enhanced by the fact that researchers are professionals and, notwithstanding
the framing of the research process, participants may perceive the encounter as an
opportunity for expertise or help, or perhaps even a safe space to debrief without the
repercussions and uncomfortableness associated with regular contact afterwards. Experienced
qualitative researchers are adept at creating a comfortable and safe environment for
conversations to take place and they are skilled at developing rapport with their research
participants. This is necessary in order to facilitate the collection of high quality data.
However, this approach may also result in the elicitation of information that is more sensitive
or personal than participants had planned to share. Some methods of qualitative data
collection open up possibilities for a range of information to be shared – both intentionally
and unintentionally. For example, researchers who travel to participants’ homes are privy to a
deeper range of personal and intimate details. Similarly, researchers who use video or
photographs to help gather data may be exposed to a variety of personal and intimate insights
through the content of the images that otherwise may not have been shared. Thus, the nature
of qualitative methods and the way in which researchers and participants interact with each
other creates a space that invites disclosure of personal, intimate information. Ethically, this
means that qualitative researchers must be highly tuned to the implications of such material,
both for themselves and for their participants (Guillemin & Drew, in press). The process of
qualitative research can make it particularly difficult for participants to voice concerns or
withdraw. Mishna et al. (2004) argue that because of the direct contact between the
researcher and participant in qualitative methods, processes for withdrawal are complicated.
They note that it is likely to be simpler for participants to stop completing a questionnaire
than to terminate an in-depth interview. This proximity of researcher and participant during
qualitative research, combined with the atmosphere of intimacy that is created, has the
potential to make the process of withdrawal highly challenging for participants. As
individuals, we all struggle at times to be authentic in our responses to others and to assert
ourselves when something makes us uncomfortable (Grzyb & Chandler, 2008, p5). Such
difficulties also translate into the qualitative research experience. The ethical risk for
participants is that they may respond to a question they would rather skip, or continue with a
research process they would rather terminate, simply to uphold a perceived obligation of
politeness or because of a lack of confidence to assert themselves, given the immediacy of the
experience and the nature of the relationship. Researchers are generally aware of participants’
identities in qualitative research which can complicate boundary issues. For example, if a
participant completes an anonymous questionnaire assessing depression and is found to be
suffering from clinically significant depression, although the researchers may be concerned
there may be no way for them to contact the participant and offer help or referral. However, if
a participant discloses severe depression during an in-depth interview, researchers may feel
more obliged to assist the participant. Thus, boundaries between the roles of researcher,
friend, therapist or clinician can become blurred. Morse (2007) discusses the potential for
uncovering information through qualitative research that might need to be reported to a third
party, specifically describing the tension that can arise when therapeutic goals and research
project goals conflict. When participants purposely disclose information to researchers it can
also be perceived as a request for help. Participants know that researchers are aware of their
identity and may have specific motivations driving such disclosures.

Scope for ethical risk when working with young people

Young participants have less life experience. This entails less experience at engaging in
lengthy conversations about themselves, less experience with the goals and processes
associated with research, less experience at being assertive, stating their needs and desires,
asking for clarification or assistance and less experience at articulating when they are
uncomfortable. Mishna et al. (2004) highlight the range of difficulties that young people’s
lack of experience can create in the qualitative research environment. For example, it may be
that young people, because of their lack of experience and different competencies, find it hard
to anticipate the range of personal experiences that they will be asked to discuss during an in-
depth interview. Similarly, they may be less able to foresee the reactions they might have in
response to such detailed discussions. This lack of experience may also impact upon young
people’s ability to choose not to participate in a research project or even to withdraw once the
project is underway. These concerns are different from concerns about competence. The issue
here is not that young people do not have the capacity to understand specific concepts, but
rather that young people lack the necessary confidence and life experience to assert their
rights in the research setting. Ethically, this creates scope for complexity because researchers
cannot be certain that young people will voice their unease or uncertainty. It has been
suggested that researchersmust therefore be responsible for not only informing young people
that they are able to withdraw from a study, but for explaining how they should actually go
about doing so if they wish to withdraw (Mishna et al., 2004). Consent is often required from
both young people and their parents in the research setting. This can create confusion about
the role of parents in research and the limits of confidentiality. Although parental consent is
generally required for young people to take part in a research project, parents are not
necessarily present during each phase of the research. In fact, in many cases it is critical that
parents are not present so that young people can be offered confidentiality and a private space
to share their stories. Mishna et al. (2004) discuss some of the complications that can arise
when adults assume they will be informed about the information their children disclose.
Ethically fraught situations can occur if parents seek information about their children’s
responses or if young people disclose information that could be considered important for
parents to know. In a review of ethical issues associated with conducting qualitative research
with children, Kirk (2007) specifically talks about boundary issues, noting that the boundaries
to confidentiality with young people are often difficult because there is always the potential
of finding out that a young person is ‘at risk’. She also explains that it is considered good
practice to be clear with participants about the limits of confidentiality and about how and
when such limits come into play. Mishna et al. (2004) highlight the tension about intervening
in the face of information that is concerning. They refer to Eder and Corsaro (1999) who state
that ‘every intervention increases the separation between the adult researchers and youth. At
the same time, every non-intervention potentially decreases young people’s perceptions of
adults as responsible advocates on their behalf’ (p527). Given the unpredictable nature of
qualitative research it is also not possible for parents to consent to each and every question
that will be posed to their children. Therefore a tension can arise in qualitative research with
young people where a desire to respect, empower and protect them can lead to uncertainties
about the limits of confidentiality and the role of parental involvement. The requirement to
gain parental consent can also impact on young people’s autonomy if young people are keen
to consent for their own participation, but parents do not want them to be involved. Similarly,
there may be instances where parents are keen but young people are not, when the potential
for coercion becomes important. Young people’s capacities for cognitive and emotional
processing are different from that of adults (Rice & Dolgin, 2005; Society for Adolescent
Medicine, 2003a; Johnson, Blum, & Giedd, 2009). As a consequence of cognitive maturation,
young people are still developing their psychosocial competencies. They have varied
capacities for thinking, reasoning, engaging, communicating, empathising and imagining.
This raises specific difficulties in the research setting. Kirk highlights the attention that issues
of competence have received in the literature around research with young people (Kirk,
2007). She notes that whereas in the past the focus tended to be about whether young people
were capable of producing meaningful and trustworthy information, a shift has now occurred.
It is now widely accepted that young people of ranging ages can provide meaningful data; the
focus now is about how best to engage them using age appropriate methods (Kirk, 2007).
However, differences in emotional and cognitive capacity must be considered when thinking
about young people’s ability to comprehend the process and purpose of research, the risks
involved and particularly their rights within the research setting. The ethical implications of
such differences in capacity are important. Young people may not understand that they can
actually choose not to participate, or even cease participating part-way through. They may
not comprehend the limits to confidentiality, or the role of researchers. Nevertheless, it is not
as simple as defining a fixed strategy for assessing risks in research with young people
because they are not all the same; ‘developmentally, adolescents are moving targets’ (Ott,
2008, p.542), so notions of risk or competence for a 12-year-old are not the same as notions
of risk or competence for a 16-year-old. Similarly notions of risk may not be the same even
for two 12-year-olds or two 16-year-olds. Researchers have to remain cognisant of these
factors throughout the research process. It has been argued that there is always an inevitable
power imbalance in the research relationship (Richards & Schwartz, 2002). However, when
we consider young people specifically, these issues are magnified. Unequal power relations
exist between adults and young people in most societies which is replicated in the research
process (Kirk, 2007). Any lack of power experienced by young people has the potential to
complicate research processes such as deciding to participate, feeling able to ask questions or
seek clarification, having the confidence to withdraw from the project and in some cases,
feeling able to provide candid responses to questions posed by researchers. Thus, yet again,
the ethical complexities of research are increased when research participants are young. With
these complexities in mind, we will now discuss further the ethical dilemma we faced as part
of our qualitative health research project with young people.

What of Toby’s mother?

As articulated above, the Optimising Pathways project entailed concurrent interviews in

separate spaces with two members of the same family. In this case, while Toby was being
interviewed by RD in one room, his mother was being interviewed by JH in another. This is
important because it means that both Toby and his mother were our participants and thus, as
researchers, our obligations extended to both of them. It is also important because it means
that a relationship was forged with Toby’s mother, shedding some light on her thoughts and
beliefs about her son’s adherence with medication and his maturity. For the purposes of
maintaining confidentiality we have chosen not to present direct quotes from Toby’s mother.
However, during the course of the interview she revealed explicit concerns about the side-
effects of the additional medication Toby was taking and expressed a desire for Toby to stop
taking this. In response to being asked about her current role in Toby’s health care, Toby’s
mother also spoke about how she had to remind him to take his medication. Toby’s mother
subsequently spoke about how she sometimes wondered whether she should be counting the
doses of medication left but also recognised that it was important for Toby to become
independent. The interview was lengthy and Toby’s mother was very open about her
emotions concerning her son and his illness, explaining that she felt some responsibility and
guilt about Toby’s condition for a range of reasons.

QUESTIONS

1) What are the ethically important issues within this case?

2) Whose voice is not being heard in the case presentation?