Decision-making, knowledge, and psychosocial outcomes in pediatric siblings identified to donate hematopoietic stem cells

Is there a choice when a sibling is ill? Experiences of children and adolescents who donated stem cells to a sibling

“…The participants confirmed that they had received adequate procedure-related information before the donation, but later in the interview told that they still lacked understanding, indicating inadequate information. The shortcomings in the communication with the donors from the present study are in accordance with previous studies (D 'Auria et al, 2015;Hoag et al, 2019;MacLeod et al, 2003;Pentz et al, 2014;Wiener et al, 2007a). Moreover, lack of age-appropriate information might increase anxiety before interventions (Gillam et al, 2020).…”

“…The adolescents were frustrated because they were aware that they did not have real choices as they were not allowed to refuse treatment (Coyne et al, 2014). A previous study showed that donors wanted to make their own decision but they were not always aware of the options (Hoag et al, 2019). Few donors in the present study knew the alternative to using them as the donor.…”

“…Swedish studies on adult stem cell donors describe that donors feel an obligation to donate when asked to do so, and emphasize the need to reduce influence from relatives and healthcare professionals (HCPs) on the sibling's decision to donate (Kisch et al, 2013(Kisch et al, , 2015. Studies from USA describe the same phenomenon among paediatric stem cell donors (Hoag et al, 2019;MacLeod et al, 2003;Packman et al, 2004). A lack of knowledge and involvement among potential paediatric donors might contribute to concerns about the transplantation process and painful procedures as well as a decreased sense of trust and autonomy (Packman et al, 2004).…”

Transplant center practices for psychosocial assessment and management of pediatric hematopoietic stem cell donors

“…While there is a clear directive that, when appropriate, there should be a mechanism in place to assess for donor assent [7,29,30], it is troubling that we found 22% of centers have no process in place and could be utilizing unwilling or reluctant donors. Previous research has addressed this topic and has consistently demonstrated that donors want to be more involved in the decision to donate [11,14,17,18,31], do not feel that they have been given the opportunity to choose donation [18,31], and feel compelled to donate due to external influence and limited understanding of alternative options [14]. It is unclear if limited involvement in the decision to donate is related to risk of poor psychosocial outcomes [32].…”

Growth in the face of overwhelming pressure: A narrative review of sibling donor experiences in pediatric hematopoietic stem cell transplant

“…The donation was forced because of the situation (Hutt et al, 2015(Hutt et al, : 1339. Some sibling donors indicated that they wanted to have the autonomy to make the final decision (D'Auria et al, 2015;Hoag et al, 2018;MacLeod et al, 2003;Packman et al, 1997a;Pentz et al, 2014), although many felt overwhelming pressure and responsibility to save their brother's or sister's life through their HSCT donation (D'Auria et al, 2015;MacLeod et al, 2003). One sibling described this pressure:…”