title: The UK postmortem organ retention crisis: a qualitative study of its impact on parents.
abstract: OBJECTIVE
  To explore the impact of postmortem organ retention on parents who made enquiries about their babies and children when the retention of hearts and other organs removed at postmortem and stored without explicit knowledge or consent of the next-of-kin came to public attention in the UK during 1999-2004.
  
  
  METHODS
  Qualitative study conducted 2003-2004. Data were collected via semi-structured, qualitative interviews and focus groups.
  
  
  METHODS
  39 parents who had been affected by organ retention.
  
  
  METHODS
  Participants were recruited via three parental peer support groups 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 enquiries 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.
authors.affiliation: School of Nursing and Midwifery, University of Southampton, Highfield, Southampton, Hampshire SO17 1BJ, UK.
authors.forename: Magi
authors.initials: M
authors.lastname: Sque
authors.forename: Tracy
authors.initials: T
authors.lastname: Long
authors.forename: Sheila
authors.initials: S
authors.lastname: Payne
authors.forename: William R
authors.initials: WR
authors.lastname: Roche
authors.forename: Peter
authors.initials: P
authors.lastname: Speck
mesh_terms: D000328:Adult; D000368:Aged; D001344:Autopsy / Q000523:psychology*; D001601:Bereavement; D002648:Child; D002675:Child, Preschool; D003657:Decision Making; D006117:Grief; D006801:Humans; D007223:Infant; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D010353:Patient Education as Topic; D009927:Tissue and Organ Procurement