Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm, Sweden.
Childhood Cancer Research Unit, Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.
J Pediatr Hematol Oncol Nurs. 2024 Sep-Oct;41(5):315-323. doi: 10.1177/27527530241285792. Epub 2024 Nov 5.
When a potential stem cell donor to a seriously ill child is a healthy sibling below 18 years, Swedish parents have the legal right and obligation to decide on behalf of the donor child. However, there are potentially conflicting loyalties when parents have one severely ill child in need for a cure and one healthy child who will be subjected to medical procedures. This study explored parents' experiences related to their decision on stem cell donation, as well as ethical considerations in the donation process where outcomes are uncertain. Individual interviews were performed with 18 parents of 13 minor donors after successful hematopoietic stem cell transplantations. Interviews were analyzed using inductive Reflexive Thematic Analysis. The parents were living with the threat of losing a child, and in this context, the main theme was found and included four subthemes; , , and . When a healthy child is a potential donor to an ill sibling, their parents' main focus is on the cure for the ill child. The lack of obvious conflicting loyalties among parents highlights the need to secure an ethical process for healthy minor donors and the importance of a separate donor advocate for these minor donors.
当一个有潜力的干细胞捐赠者是一个 18 岁以下的健康兄弟姐妹时，瑞典父母有合法权利和义务代表捐赠者孩子做出决定。然而，当父母有一个急需治愈的重病孩子和一个将接受医疗程序的健康孩子时，他们可能会有潜在的冲突忠诚。本研究探讨了父母在干细胞捐赠过程中的决定以及在结果不确定的情况下的伦理考虑相关的经验。在成功进行造血干细胞移植后，对 13 名未成年供者的 18 名父母进行了个体访谈。使用归纳性反思主题分析方法对访谈进行了分析。父母生活在失去孩子的威胁中，在这种情况下，发现并包含了一个主要主题和四个子主题； 、 、 和 。当一个健康的孩子是一个生病兄弟姐妹的潜在供者时，他们父母的主要关注点是治愈生病的孩子。父母之间没有明显的冲突忠诚，这突出表明需要为健康的未成年供者确保一个合乎伦理的过程，以及为这些未成年供者配备一个单独的捐赠倡导者的重要性。
