All researchers bear significant responsibility for the care of their participants and themselves. In the case of research with vulnerable individuals who may have been marginalised, hidden or suffered
discrimination and harassment, such responsibility is even greater. I was aware that I was necessarily asking questions about potentially sensitive areas: estrangement from family, loneliness and isolation and the fears of older age. My ethical responsibility to minimise potential emotional distress compelled me to shape the research process carefully, particularly at the interview stage where it was vital to ensure that participants were not left exposed or burdened by emotion long after I had packed up my voice recorder and left.
One of the first steps I took to ensure ‘informed participation’ was that, in addition to my attendance at various group meetings and adverts placed in groups’ newsletters or websites, all participants were made aware of the research through an information sheet (Appendix 3), which detailed the purpose of the research and gave assurances about the confidentiality and anonymity of the participants and the ways in which the findings might be used. If they subsequently expressed an interest in participating in the research they were asked to complete a ‘participant information form’
(Appendix 4).
Informed consent, anonymity and confidentiality
At the start of the interview, the purpose of the research, confidentiality, anonymity and the right to withdraw were again discussed and all
participants signed a consent form (Appendix 5) at this point. This also outlined the use and storage of the anonymised data. Participants were assured that their identity would be kept confidential and a pseudonym used to ensure their anonymity. They were alerted to the fact that their
confidentiality could be limited only if I became concerned that someone was at risk of harm.24
It may be particularly important to conceal the identities of lesbian and gay participants to protect them and their friends and families from social
stigmatisation. Weston (2004) assigned pseudonyms to her participants but she notes that, in the main, they did not request them and, when they did, it was in relation to concealing their identity in relation to employment and their children’s identities. Seven participants chose their own pseudonyms and I allocated the remainder, aiming to be attentive to their name, age and what they had told me about themselves when discussing issues such as ethnicity and faith. At least two of the women lived under first names they had actively chosen rather than been given. Saunders et al. (2014) report that several of their interviewees resisted attempts to conceal their identity and this was reflected in my study. Not all participants wanted to be
anonymous and two women, Val and ‘Denny’, felt quite strongly that I should use their real names. Ultimately I decided to retain Val’s name as she stressed its importance repeatedly and also sent me identifiable photos of herself as an older woman to use as part of a presentation at a lesbian conference. ‘Denny’, though, is a pseudonym as the participant was highly critical of the older lesbian group she belonged to and using her true name
As part of the consent procedure, I explained that if I became aware of something that gave cause
might jeopardise her relationship with the organisation and its members.
These are complicated issues and I saw no way of making a single choice that would honour the participants’ wishes while at the same time protecting the anonymity of other individuals and organisations. Kaiser (2009)
suggests that it is time for researchers to re-think the thorny issue of consent rather than making blanket decisions about what is best for participants:
A more nuanced view of consent means moving away from the assumption that every respondent desires complete confidentiality and instead recognizing that a research participant might want to receive recognition for some or all of what he or she contributes. (p.9)
The issue of anonymity was revisited when transcripts were returned for checking. Each transcript was returned with a note (Appendix 6) by email or hard copy in the post depending on the participant’s preferences. One of my participants had stated at the outset of the interview that she was not
bothered about the possibility of identification:
What I think – the confidentiality stuff – is that if somebody knows you – even vaguely knows you – depending on how much you share, they know who you are anyway so… I don't care. I don't care. I wouldn't offer to do it if I cared really.
However, she was one of several participants who exercised their right to edit the transcript, removing a number of statements where she had ridiculed members of the social group she belonged to and exposed the hierarchies and rigid social stratification that structured the group. Her reasoning for the redaction was ostensibly to preserve the confidentiality of others although she admitted that the interview had also led her to be judgemental:
The highlighted bits are to be deleted/not used, mainly because they are too identifying, although I have also deleted the mean things I said about [name of group] in case I was identifiable! [By post]
This fear of identification is explored by Nespor (2000) who interrogates the assumption that full anonymity for participants and organisations is both possible and desirable. She suggests that there are a number of reasons why preserving anonymity may be neither practical or possible, particularly in research fields such as mine, which are relatively small and close-knit:
[T]he very activity of doing extended fieldwork implies a level of public visibility and engagement - of being seen and presenting oneself as a researcher in certain places, at particular events, with specific people - that later makes it relatively easy for others to reconstruct identities (of settings, if not individuals) from published accounts. (p.547)
As well as anonymising participants, I have concealed the identity of the groups they attended – as far as is possible given the small number of groups for older lesbians and bisexual women, particularly outside the capital, and the fact that many participants were friendly both within and across groups. The codes used for the groups are further explained in Appendix 7. My own identities however, remain exposed. As Ryan-Flood (2009) discusses, ‘this openness both within and beyond the Academy can make the researcher potentially vulnerable’ (p.223). Although I do not feel particularly vulnerable within the confines of the university and research community, when this period of study is over, I may be more sensitive about the identities I have put in the public domain through conducting and
speaking about this research, particularly if I return to my previous employment in education.
Emotions in research: Protecting participants
Although I had prepared a ‘support sheet’ for participants which they were given at the end of the interview (Appendix 8), asking people to think about issues such as older age and intimacy and future care needs was sensitive and sometimes felt invasive, even devious. It was not always easy to get the timing right; asking too early meant running the risk of disrupting the rest of the interview and having developed insufficient rapport to explore such a tricky topic. Too late and there was not enough time to ‘recover’ safe ground and ensure the participant’s well-being before the interview closed. On one occasion this question came very near the end of an interview, which was time-limited, as the participant had another meeting to go to (and had travelled up from the south coast early in order to be interviewed before this). I worried for a long while after about the timing of this, knowing that she had left the interview still thinking about these difficult issues.
22.5.14 – Email from Rosie to me
[…] The very last question you asked me still floats worryingly around my head – even though it is something that I already thought about a lot. The fact that you actually asked how would I feel or cope when I wasn’t so mobile and couldn’t travel to London easily made the
potential not-so-distant possibility of this quite disturbing. I think I said at the end that when this happened I would have to consider joining local activities provided by Age Concern/UK (an awful thought)!!!
22.5.14 - Email from me to Rosie
I'm really sorry I asked you about 'later life' restrictions at the end of the interview. It was very thoughtless of me and I hope it didn't cause you too much anxiety or distress.
2.6.14 – Email from Rosie to me
No apology needed re the ‘later life restrictions’ question. It was odd to hear it – but I had already thought about it and your question actually made me consider it more and, after all my moans about [name of place], when I am less mobile I would rather be here than in London!
At least I can drive my mobility car along the four miles of prom!!
Sometimes recalling difficult situations and losses provoked an emotional response that was both painful to witness and not easy to respond to
naturally or with ease in the context of the interview. Questions about older age, loss and loneliness invoke feelings of vulnerability and can cause emotional distress. Recounting the ‘closing down’ of her life following her retirement, the death of her mother and the deterioration of her eyesight, reduced Anne to tears within the first five minutes of her interview. Here, Sofia admits that my questions are emotionally difficult to address and that it is causing her pain to think about her own loneliness:
What prompts loneliness? I'm just trying to think. [Long pause]
Loneliness, loneliness. I'm not sure if loneliness is the right feeling but you know, when you break up with a long relationship it’s, it’s, it’s disappointing, it’s gut-wrenching, you feel a hole so I guess that's loneliness. […] Do you want some more coffee while it’s still warmish?
[…] Distraction. Distraction.
My intent to interview reflexively was influenced by Bowtell et al. (2013) who urge ethical mindfulness as a way of attending with compassion to the ‘here and now’ (p.654). Although I felt I had engaged in mindful practice, with hindsight, I wonder whether I subconsciously ‘soft-pedalled’ the questions about loneliness as I became more attuned to the emotions I was provoking.
Certainly, when I arrived at the analysis stage I was surprised at my own superficiality; my lack of follow up and probing questions indicating the desire not to provoke further distress. I am hopeful that my transparency about such research difficulties may help others to develop more mindful practice.
Emotional labour: Empathy, guilt, responsibility and reciprocity I hope that you manage to keep your energy up ‘cause it must be draining for you, like you say, meeting different people and hearing their stories.
Shirley (born 1948).
Dickson-Swift et al. (2007) identify several challenges facing qualitative researchers who investigate sensitive issues. These include ‘researcher self-disclosure, listening to untold stories [and] feelings of guilt and
vulnerability’ (p.327) all of which are particularly germane to the experience of those whose participants are marginalised. Interviewing older lesbians was certainly not an objective process. The similarities and differences between us impacted on me profoundly, provoking an emotional response and causing me to consider my own future ageing. I experienced intense sadness and empathy, for example, when Anne talked about how she imagined her dead father would regard her life, my own father having died when I was a child. I felt guilt for the many freedoms and privileges, which my generation as well as my class have bestowed, and feared the isolation conjured up by some of the testimonies.
I am drawn in by Anne’s conjecture about how her long dead father might have been supportive or might have found it strange and it chimes with me - as does her discussion of her partner, 11 years older than she and the possibility that she might die before her (I am 13 years older than my partner). This then is the danger of
characteristics shared with participants, being offered a premature glimpse of a world of older lesbians – a world that I will, in the not too distant future, inhabit.
Extract from my Research Diary 25.2.14
Hubbard et al. (2001) document the emotional labour of research including addressing the challenges that trigger emotions such as anger or upset in researchers and participants, pointing out that while there is much concern and protection for the participants’ emotional well-being there is less
jurisdiction for the researcher. I have previously written about the toll of emotional labour attached to research (Wilkens, 2014) and, forearmed with this knowledge, I took steps to protect my own emotional well-being as well as that of my participants. As well as utilising the regular supervision
sessions offered by the university, myself and another PhD student
undertaking research in sensitive areas with ‘shared characteristic/lifestyle’
participants talked frequently about our research and emotions, thus forming an informal co-supervision group which provided mutual support and
empathy and was ultimately grounding and constructive offering an opportunity for reflexive discussions and theoretical development. Lewis (2011) calls for a community of social support for researchers doing
‘emotion work’ - based on her own experience as a Black lesbian
researcher investigating similar populations. I would suggest that whether we opt for critical friendship, co-supervision or community of support, some type of social support network is an essential component of research where emotions may be provoked by similarities in lifestyle, characteristics or experience as well as the sensitive or traumatic nature of the topic of the investigation. I also found that reflexive use of a Research Diary helped me to record (and diffuse) some of the disappointments, anxieties and joys of the active research phase as well as expressing the emotional responses I withheld in some interviews where I attempted to contain and manage my reactions.
Several interviews revealed assumptions of shared identity and a common frame of reference indicated for example, by cultural references. Clare Summerskill was referred to on so many occasions I eventually booked
tickets to see her! The assumption of shared characteristics was sometimes inscribed with another belief, that of my political activism as a researcher, and I was left with an overwhelming sense of responsibility and obligation to use the data and history diligently and to the greater good:
And you and I have fought hard all our lives for this. You're going to have to stand up at conferences as an out lesbian, choosing your image, choosing your words, choosing your ideology. You, like me, you've got a sense of all of this history, right?
Kate (born 1946).
I would say that actually it’s imperative for the majority, for the majority of – this sounds dreadful but – from 60 plus people that this does still exist. Because this is coming to their time in life where they're at their most vulnerable. So, from that point of view, I think ‘good on you’ for fighting the case!
Vanessa (born 1947).
As one way of honouring the trust placed in me by the participants, throughout the project I have made connections with various groups
promoting the interests of older LGBT individuals in practice and policy and shared my ideas within these forums. I have contributed to work conducted by the Campaign to End Loneliness, attended events put on by ODL and facilitated sessions at one of the older lesbian groups where I recruited several participants. I have also given several presentations and published articles about my research in order to make the lives of older lesbians more visible. One of my overriding aims is to produce research that is accessible and has practical and ‘real life’ application. Although I am conducting academic research with the aim of generating original thought and
knowledge, at the same time it is important to me to feel that I am able to contribute meaningfully to the knowledge base and practice of organisations working with, or on behalf of, older lesbian and bisexual women.