The potential therapeutic value for bereaved relatives participating in research: An exploratory study

Alison Germain, Catriona R Mayland, Barbara Jack

Research output: Contribution to journalArticle

Abstract

Objective: Conducting research with the bereaved presents an immediate ethical challenge, as they are undoubtedly a vulnerable group, associated with high levels of distress and susceptible to both physical and mental health issues. A comprehensive understanding of the potential therapeutic benefits for bereaved relatives participating in palliative care research is limited, and therefore the ethics of engaging this group remain questionable. Method: This paper describes a secondary analysis of qualitative data collected in the Care of the Dying Evaluation (CODE) project, examining the experiences of patients who died at home. It explores the motivations and potential benefits for bereaved relatives participating in research with reference to the recently developed concepts in bereavement theory. Cognitive interviews were conducted with 15 bereaved relatives and secondary analysis using a content analysis framework was employed to classify the data. Results: The results center around six recurring concepts identified as adaptive in current bereavement theory: an opportunity to share the narrative accounts of the final hours of their relative’s life; a search for sense and meaning in loss; an ongoing bond/attachment with the deceased; altruistic motivations; oscillation between loss and restorative orientations; and a sense of resilience. Overall, the participants found that taking part in the research was valuable and that it could be described as offering therapeutic benefits. Significance of results: The need for bereaved relatives to take part in research studies should be encouraged, as they provide an accurate proxy for the patient’s experience of end-of-life care while also providing a valuable account of their own perspective as family member and carer. In addition, we highlight the need for ethics committees to be
Original languageEnglish
Pages (from-to)479-487
JournalPalliative and Supportive Care
Volume14
Early online date29 Oct 2015
DOIs
Publication statusE-pub ahead of print - 29 Oct 2015

Keywords

  • Palliative care
  • Evaluation of care
  • Bereaved family carers
  • Research with bereaved
  • Therapeutic value of participating

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