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

J R Soc Med 2008;101:71-77
doi:10.1258/jrsm.2007.060178
© 2008 Royal Society of Medicine

 

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J R Soc Med 2008;101:71-77
© 2008 The Royal Society of Medicine


Magi Sque1
Tracy Long1
Sheila Payne3
William R Roche2
Peter Speck4


1 School of Nursing and Midwifery, University of Southampton, Highfield,
Southampton, Hampshire SO17 1BJ, UK
2 School of Medicine, University of Southampton, Highfield, Southampton,
Hampshire SO17 1BJ, UK
3 Institute of Health Research, University of Lancaster, King’s College,
London,
4 Department of Palliative Care, Policy and Rehabilitation, King’s College,
London,

Correspondence to: Dr M Sque. E-mail:
mrs{at}soton.ac.uk

 


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
knowledge or consent of the next-of-kin came to public attention in the UK
during 1999-2004.

Design: Qualitative study conducted 2003-2004. Data were collected
viasemi-structured, qualitative interviews and focus groups.

Participants: 39 parents who had been affected by organ
retention.

Setting: 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 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.


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