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Parents’ experiences of requests for organ and tissue donation: the value of asking

Parents’ experiences of requests for organ and tissue donation: the value of asking
Parents’ experiences of requests for organ and tissue donation: the value of asking
Objective A proportion of children die, making them potentially eligible to be organ/tissue donors. Not all are approached for donation, and experiences of those parents are not well understood. The objective was to investigate to what extent organ and tissue donation (OTD) is discussed as part of end-of-life care and to explore parents’ and healthcare professionals’ (HCPs) experiences.

Design A retrospective qualitative study.

Setting Multicentre study with participants recruited through two neonatal intensive care units (ICUs), two paediatric ICUs, a cardiac ICU and a children’s hospice.

Patients Bereaved parents, parents of a child with a long-term condition (LTC) and HCPs.

Interventions None.

Main outcomes and measures Parents’ and HCPs’ views and experiences of discussions about OTD.

Results 24 parents of 20 children were interviewed: 21 bereaved parents and 3 parents of a child with a LTC. Seven parents were asked about donation (13 not asked), four agreed and two donated. 41 HCPs were interviewed. Themes: complexity of donation process, OTD as a coping strategy, the importance of asking, difficulty of raising the topic,\ and parents’ assumptions about health of organs (when donation is not discussed).

Conclusions The findings add new knowledge about parents’ assumptions about the value of their child’s organs when discussions about OTD are not raised, and that HCPs do not routinely ask, are sometimes hesitant to ask in fear of damaging relationships, and the reality of the complexity of the donation process. Given the current levels of awareness around OTD, the topic should be raised.
0003-9888
1-7
Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962
Long-Sutehall, Tracy
92a6d1ba-9ec9-43f2-891e-5bfdb5026532
Randall, Duncan
21b02c15-4d2c-4491-b4ae-e8008c1a093e
Wakefield, Claire E.
e3077def-60a6-4da7-8d13-0a0ce10dc85d
Robinson, Victoria
6ad3fda9-a747-46a3-99bf-0818fcd929fc
Brierley, Joe
e792702b-d261-4ea4-bc6a-43a638cf2c94
Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962
Long-Sutehall, Tracy
92a6d1ba-9ec9-43f2-891e-5bfdb5026532
Randall, Duncan
21b02c15-4d2c-4491-b4ae-e8008c1a093e
Wakefield, Claire E.
e3077def-60a6-4da7-8d13-0a0ce10dc85d
Robinson, Victoria
6ad3fda9-a747-46a3-99bf-0818fcd929fc
Brierley, Joe
e792702b-d261-4ea4-bc6a-43a638cf2c94

Darlington, Anne-Sophie, Long-Sutehall, Tracy, Randall, Duncan, Wakefield, Claire E., Robinson, Victoria and Brierley, Joe (2019) Parents’ experiences of requests for organ and tissue donation: the value of asking. Archives of Disease in Childhood, 1-7. (doi:10.1136/archdischild-2018-316382).

Record type: Article

Abstract

Objective A proportion of children die, making them potentially eligible to be organ/tissue donors. Not all are approached for donation, and experiences of those parents are not well understood. The objective was to investigate to what extent organ and tissue donation (OTD) is discussed as part of end-of-life care and to explore parents’ and healthcare professionals’ (HCPs) experiences.

Design A retrospective qualitative study.

Setting Multicentre study with participants recruited through two neonatal intensive care units (ICUs), two paediatric ICUs, a cardiac ICU and a children’s hospice.

Patients Bereaved parents, parents of a child with a long-term condition (LTC) and HCPs.

Interventions None.

Main outcomes and measures Parents’ and HCPs’ views and experiences of discussions about OTD.

Results 24 parents of 20 children were interviewed: 21 bereaved parents and 3 parents of a child with a LTC. Seven parents were asked about donation (13 not asked), four agreed and two donated. 41 HCPs were interviewed. Themes: complexity of donation process, OTD as a coping strategy, the importance of asking, difficulty of raising the topic,\ and parents’ assumptions about health of organs (when donation is not discussed).

Conclusions The findings add new knowledge about parents’ assumptions about the value of their child’s organs when discussions about OTD are not raised, and that HCPs do not routinely ask, are sometimes hesitant to ask in fear of damaging relationships, and the reality of the complexity of the donation process. Given the current levels of awareness around OTD, the topic should be raised.

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Parents’ experiences of requests for organ and tissue donation: The value of asking - Accepted Manuscript
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More information

Accepted/In Press date: 11 March 2019
e-pub ahead of print date: 11 May 2019

Identifiers

Local EPrints ID: 429255
URI: http://eprints.soton.ac.uk/id/eprint/429255
ISSN: 0003-9888
PURE UUID: ba31a605-3ada-4bb3-8f04-5f008d39f24d
ORCID for Tracy Long-Sutehall: ORCID iD orcid.org/0000-0002-6661-9215
ORCID for Duncan Randall: ORCID iD orcid.org/0000-0002-8356-7373

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Date deposited: 25 Mar 2019 17:30
Last modified: 28 Apr 2022 04:29

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Contributors

Author: Duncan Randall ORCID iD
Author: Claire E. Wakefield
Author: Victoria Robinson
Author: Joe Brierley

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