The UK postmortem organ retention crisis: a qualitative study of its impact on parents

Objective: To explore the impact of postmortem organ retention on parents who made enquires about their babies and children when the retention of hearts and other organs removed at postmortem and stored without explicit knowledgeor consent of the next-of- kincame to public attention in the UK during 1999-2004. Design: Qualitative study conducted 2003-2004. Data were collected via semi-structured, qualitative interviews and focus groups. Participants: 39 parents who had been affected by organ retention. Setting: Participants were recruited via three parental peer supportgroups and two NHS Hospital Trusts. Results: Transcripts of the interviews and focus groups were analysed using a thematic approach that sought patterns within the data and highlighted important similarities and differences between participants' accounts. Participants reported the distressing impact organ retention had on their lives; their need for information about the retention of their babies' or children's organs; and the difficulties in their decision making about disposal of retained body parts and tissue blocks and slides. Analysis indicated that organ retention had evoked unresolved bereavement issues and a renewal of grief as well as an opportunity for some parents to resolve ongoing bereavement concerns. Conclusions: Parents in this study wanted NHS teams to appreciate the difficulties organ retention had caused them, deal with their enquires proactively with openness and honesty, and facilitate an environment where they felt supported and could gain the answers to their questions and concerns that were provoked by postmortem organ retention. Such issues may also have implications for the care of other parents and relatives of deceased children.