There are different groups in society who may be considered vulnerable, for example those experiencing mental or physical health issues, learning disabilities, prisoners or children. There are, however, other groups in society who may also be regarded as vulnerable, such as those who are bereaved. Vulnerability in relation to the bereaved occurs as a result of experiencing a normal life event, death or a loss. In this situation vulnerability may be transient and, depending upon the management of the bereavement, generally (...) temporary. Unlike the aforementioned groups, participants required for this type of research (bereavement, death and dying) are able to consent themselves into projects, and the capacity to do so is not an issue. Undertaking research with those who may be considered vulnerable into sensitive, emotive topics such as death and dying can create difficulties for the National Research Ethics Service (NRES), making it difficult to get approval for such studies. It appears that the ethical issues are concerned with not wishing to cause distress to participants when asked for research purposes to recollect what for some may have been emotionally challenging and traumatic events. The article offers a narrative, reflective account of the above from several perspectives: being employed as a contract researcher in a university; having experience of being an active member of a National Health Service Research Ethics Committee; and later assuming the role of full-time postgraduate (PhD) student requiring ethical approval to undertake research with what may be considered a vulnerable group involving a sensitive and emotive topic. Valuable insights from participants – their views on participation in an emotive research project and good practice in research having been explored via questionnaire – are highlighted and discussed. (shrink)

BackgroundContradictory evidence exists about the emotional burden of participating in qualitative research for palliative care patients and carers and this raises questions about whether this type of research is ethically justified in a vulnerable population. This study aimed to investigate palliative care patients' and carers' perceptions of the benefits and problems associated with open interviews and to understand what causes distress and what is helpful about participation in a research interview.MethodsA descriptive qualitative study. The data were collected in the context (...) of two studies exploring the experiences of care of palliative care patients and carers. The interviews ended with questions about patients' and carers' thoughts on participating in the studies and whether this had been a distressing or helpful event. We used a qualitative descriptive analysis strategy generated from the interviews and the observational and interactional data obtained in the course of the study.ResultsThe interviews were considered helpful: sharing problems was therapeutic and being able to contribute to research was empowering. However, thinking about the future was reported to be the most challenging. Consent forms were sometimes read with apprehension and being physically unable to sign was experienced as upsetting. Interviewing patients and carers separately was sometimes difficult and not always possible.ConclusionThe open interview enables the perspectives of patients and carers to be heard, unfettered from the structure of closed questions. It also enables those patients or carers to take part who would be unable to participate in other study designs. The context is at least as important as the format of the research interview taking into account the relational circumstances with carers and appropriate ways of obtaining informed consent. Retrospective consent could be a solution to enhancing participants control over the interview. (shrink)