Understanding and meeting the psychosocial needs of sibling donors

Often the psychological and emotional impact of donation is not sufficiently taken into consideration for sibling donors. This was a conclusion of the session, “What About Me? A Stem Cell Sibling Donor Program,” at the 2019 annual conference of the Association of Pediatric Oncology Social Workers (APOSW).

To remedy this, the presenters from Children’s Mercy Hospital in Kansas City, Missouri, shared their recommendations on the topic resulting from a sibling donor task force created by the transplant team.

The task force of social workers, child life specialists, and transplant physicians focused on the psychological well-being of the sibling donor and determined that health care teams need to place more emphasis on treating sibling donors as individuals requiring individualized health care, separate from the patient. Specifically, they recommend health care teams

  • Take time with potential sibling donors to answer all their questions.
  • Recognize that when there are multiple siblings to choose from, a sibling not selected may feel guilt, left out, or not good enough. These siblings also need support from the health care team.
  • Be careful about language used with sibling donors. Avoid phrases such as “saving their life” because this can put undue pressure and responsibility on the child. 

If there are complications post-transplant, the sibling donor should be given additional psychological support and resources to cope with any feelings, such as guilt, that may come up associated with these complications.

Finally, the task force recommended that transplant centers using sibling donors:

  • Develop educational materials appropriate for a variety of donor ages
  • Establish clear protocols for sibling donors (i.e., having their own medical chart and own post-transplant follow up)

Presenters of this session at the 2019 APOSW annual conference were Lindsey MacDonald, LMSW, LCSW, OSW-C; Sarah Anderson, CCLS; and Ashley Smith, MS, CCLS.