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.
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.
- palliative care
- qualitative research
- organ donation
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Contributors A-SD conceived the study, contributed to the literature review, provided data and carried out the qualitative data analysis. TL-S conceived the study, contributed to the literature review and provided additional data interpretation. DR and VR carried out the qualitative data collection and analysis. CW contributed to the literature review and provided additional data interpretation. JB conceived the study, provided data and provided additional data interpretation.All authors reviewed results, reviewed and contributed to the report.
Funding This study received no direct funding but was supported by (i) the National Institute for Health Research Great Ormond Street Hospital Biomedical Research Centre. (ii) Great Ormond St Children’s Charity. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR, the UK Department of Health. or GOSCC.
Competing interests None declared.
Ethics approval Ethical approval was gained through the University of Southampton, the UK Integrated Research Application System (15/SC/0492), the children’s hospice ethics committee and hospital R&D departments.
Provenance and peer review Not commissioned; externally peer reviewed.
Patient consent for publication Not required.