Researching sensitive and emotive topics: The participants’ voice

Abstract

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.