School of Health Sciences, University of Southampton, Southampton, UK.
School of Women's and Children's Health, UNSW Sydney, Sydney, New South Wales, Australia.
Arch Dis Child. 2019 Sep;104(9):837-843. doi: 10.1136/archdischild-2018-316382. Epub 2019 May 11.
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.
A retrospective qualitative study.
Multicentre study with participants recruited through two neonatal intensive care units (ICUs), two paediatric ICUs, a cardiac ICU and a children's hospice.
Bereaved parents, parents of a child with a long-term condition (LTC) and HCPs.
None.
Parents' and HCPs' views and experiences of discussions about OTD.
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).
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.
一部分儿童死亡，使他们有可能成为器官/组织捐献者。并非所有儿童都被征求捐献意见，而这些父母的经历也没有得到充分理解。本研究旨在调查在多大程度上，器官和组织捐献（OTD）是作为临终关怀的一部分进行讨论的，并探讨父母和医疗保健专业人员（HCPs）的经验。
回顾性定性研究。
通过两个新生儿重症监护病房（NICU）、两个儿科重症监护病房、一个心脏重症监护病房和一个儿童临终关怀病房，多中心招募参与者。
丧亲父母、患有长期疾病（LTC）的儿童的父母和 HCPs。
无。
父母和 HCPs 对 OTD 讨论的看法和经验。
对 20 名儿童的 24 名父母进行了访谈：21 名丧亲父母和 3 名患有 LTC 的儿童的父母。有 7 名父母被问及捐献（13 名未被问及），4 名同意，2 名捐献。对 41 名 HCPs 进行了访谈。主题包括：捐献过程的复杂性、OTD 作为应对策略、询问的重要性、提出话题的困难，以及父母对器官健康的假设（当未讨论捐献时）。
这些发现增加了新的知识，即当未提出 OTD 讨论时，父母对其孩子器官价值的假设，以及 HCPs 没有常规询问，有时因为担心破坏关系而犹豫不决地询问，以及捐献过程的复杂性的现实。鉴于目前对 OTD 的认识水平，应该提出这个话题。
