Experiences and unmet needs of family members requested to donate haematopoietic stem cells to an ill relative: findings from a prospective multi-centre study.

Abstract

Despite well-documented physical effects of haematopoietic stem cell (HSC) donation, far less attention has been focused on the psychosocial impact for family donors. This study aimed to better understand the psychosocial aspects of HSC donation by family members, focusing, in particular on their needs for information and supportive care. Thirty-one adult HSC family donors from two clinical hospitals were interviewed before, during and 1month after HSC donation. Interviews explored ambivalence, motivation, perceived pressure, preparedness, the donor-recipient relationship, information and support received and suggestions for improvement. Three main themes about the donation experience were identified: 'call to arms' (focused on the recipient, stressful urgency, making meaning of being a donor, decisional ambivalence), 'proceeding with donation' (living in limbo, unsettling uncertainty, pervasive pain, feeling supported) and 'after the dust settles' (feeling discarded, downplaying role, residual symptoms, dealing with adverse recipient outcomes). Underlying system and communication issues included time for consideration prior to donor work-up, management of confidentiality, information inadequacy and access to support. Donors wanted information about the emotional challenges specific to being a family donor, such as ways in which previous donors coped with recipient death. For donors whose recipient had died, the priority for improved care was follow-up support. Our findings emphasise a gap in information and supportive care for family donors and the need for a protocol specifically designed to inform and support family donors before, during and after HSC donation.