Contextualising Vulnerability and the Process of Informed Consent: Bereaved Participants' Perspectives of Taking Part in Sensitive Qualitative Research

Abstract

This thesis set out to elucidate how bereaved persons from three different thanatology studies experienced the research process. A key question pertained to whether or not they perceived themselves as vulnerable in the context of research ethics review. Qualitative semi-structured interviews were carried out in the South Island of New Zealand with sixteen bereaved persons. Participants were recruited through word of mouth or via researchers from the previous studies1. Interviews were thematically coded using grounded theory. In addition to the notion of bereaved persons as vulnerable, research ethics issues such as participant recruitment and the consent process were explored. Participants did not view themselves as ‘vulnerable, but instead reported finding their experience of research as positive. Many cited therapeutic benefits from taking part in research, either from the interview itself, which some found ‘cleansing’ or ‘healing’, or from reading other participants’ comments in the write up. Some participants also reported enjoying altruistically contributing to the ‘bigger picture’ of bereavement research. Meaning-making and seeking memorialisation and symbolic immortality for their deceased loved ones were other reported benefits. Participants had few issues with the signed consent process – indeed some were comforted by signing the consent form – but a number of participants reported that the participant information sheet (PIS) was too long and complex, and voiced their ideas as to how this could be improved. A key finding in regards to the recruitment of bereaved persons for research participation was that none measured their readiness for taking part in interviews by the number of months or years that had passed since the death of a family member. Instead, significant events and anniversaries relating to their deceased loved one was more important to their grief process and their readiness for research participation. Moreover, participants were adamant that they could decide for themselves when they were ready to take part in research and that they did not need an ethics committee to decide for them. For this reason, they felt that researchers should be allowed to invite bereaved persons into research at any time. Participants were clear on how they wanted to be approached by researchers: sensitively, without pressure, and with a transparent agenda. Finally, most participants reported that they appreciated seeing the results or write-up from research, even when many could not understand it by virtue of complex academic language. While some said that they would prefer a more simple report of the results, the majority appreciated the transformation of their narratives into a format that they perceived as more powerful. Participants felt that by combining their narratives with other bereaved voices and transforming them into this more powerful form, then they were more likely to be heard. They hoped this process would instigate positive changes in society in relation to death and grief and these changes that they anticipated will be discussed in the body of this thesis.