DO THEY REALLY HAVE A CHOICE?
Weaver and colleagues point out that donor siblings face a two-fold dilemma: their sibling is a chronically ill child, and they have been asked to take on the responsibility of serving as a donor.1 They may experience guilt feelings if the sibling does not survive. Even when given all the facts, sibling donors may feel as if they have no say in the matter of becoming a donor.
In a study at one institution, 5 of 15 siblings reported feeling as though their opportunity to say ‘No’ was limited.2 They perceived themselves as having no choice due to expectations from doctors and family members. Furthermore, nine siblings in that study also felt their own religious beliefs prevented them from declining to donate.2
The situation is even more difficult for nondonor siblings. In a study that included 44 siblings, 21 donors and 23 nondonors, age 6 to 18 years, of surviving pediatric bone marrow transplant recipients, nondonor siblings showed significantly more school problems than donor siblings, and one-third of nondonor siblings reported a moderate level of post-traumatic stress reaction.3
Fortunately, medical centers are increasingly utilizing child life specialists to educate, prepare, and lend support to sibling donors. They provide counseling and therapeutic activities to address the emotional distress that accompanies the unique situation.
Whether a young person is able to donate stem cells for an ill sibling, and regardless of the outcome, the oncology nurse and other transplant team members are in an exceptional position to aid and guide the donor sibling through this incredibly difficult time.
1. Weaver MS, Diekema DS, Carr A, Triplett B. Matched marrow, sibling shadow: The epidemiology, experience, and ethics of sibling donors of stem cells [published online ahead of print July 31, 2015]. J Adolesc Young Adult Oncol. 2015;4(3):100-104. doi:10.1089/jayao.2014.0051.
2. MacLeod KD, Whitsett SF, Mash EJ, Pelletier W. Pediatric sibling donors of successful and unsuccessful hematopoietic stem cell transplants (HSCT): a qualitative study of their psychosocial experience. J Pediatr Psychol. 2003;28(4):223-230.
3. Packman WL, Crittenden MR, Schaeffer E, et al. Psychosocial consequences of bone marrow transplantation in donor and nondonor siblings. J Devel Behav Pediatr. 1997;18(4):244-253.
This article was updated on October 21, 2015.