Poster Discussion Abstracts
Aims & Objectives:
A proportion of children with life-threatening conditions (LTC) are potentially eligible to be organ and/or tissue donors. While research has focused on donation rates and best practice, relatively little is known about parents’ experiences of requests (or not) for donation. Increased understanding of parents’ experiences will hopefully enable improved decision-making and support.
Bereaved parents and parents of a child with LTC were interviewed to investigate experiences of requests for organ and tissue donation. Recruited via 2 NICU, 2 PICU, 1 Cardiac ICU and 1 children’s hospice. Parents asked about donation, specifically whether they were asked, and their experiences related to the request and the donation (if applicable). Thematic analysis carried out to generate overarching themes.
24 parents of 20 children interviewed: 21 bereaved, 3 child with LTC. 7 parents/children were asked about donation (13 not) - 4 agreed, 2 donated. Five overarching themes identified: 1) difficulty of timing of request, 2) importance of altruism and child’s legacy around decision-making, 3) request, or lack of request, as judgement/indication of child’s value, 4) emotional cost to staff and 5) negative aspects, e.g. paperwork, brain-death tests.
Parents are aware of the cost to staff in asking, and that there is an emotional cost for parents when not asked, as they interpret this as judgement about their child’s value. No parent reported insensitive or inappropriate approaches by health professionals. A request should be made, if eligibility allows, as parents can derive comfort from the thought that their child might be suitable for donation.