The psychosocial impact of haematopoietic stem cell donation on adult related donors

None listed

Background: While World Marrow Donor Association Standards ensure consistency in the assessment and care of unrelated haematopoietic stem cell (HSC) donors, no such criteria exist for related HSC donors. Unlike unrelated donors, related donors are actively involved in the transplant process and witness first-hand the changes in their relative’s health. Their lived experience is thus likely to be very different from that of unrelated donors and it is important to understand and address their needs. Aim: The aim of this PhD project is to identify potential predictors of psychosocial distress and unmet needs of adult related HSC donors, to develop information resources for health professionals and develop and pilot test a psycho-educational resource for donors. PHASE I Participants are adults undergoing HSC donation for a related recipient at the RBWH and Westmead Hospital, Sydney. Donors complete 3 interviews and provide 3 samples of saliva (as a measure of stress): (1) 2 weeks pre-HSC collection; (2) within 24hrs of HSC collection and; (3) 30 days post-HSC collection. An interview with BMT Nurses will explore the nature of their role, their perceptions of the psychosocial needs of donors and their role (if any) in responding to donor distress. Hypotheses: As research into adult related donors is limited, findings from research with younger related HSC donors and adult bone marrow donors were used to make the following predictions: 1. Donor perceptions of the closeness of the relationship with the recipient will be associated with post-donation reactions such as guilt, responsibility and stress. 2. Perceived adequacy of preparation and emotional support will correlate with post-donation reactions such as concern for own health, physical pain/discomfort, guilt and responsibility. 3. Donors with poorer self-evaluated health-related quality of life will report more negative reactions throughout the process. 4. Donors of recipients who experience adverse clinical events (such as development of graft versus-host-disease) will experience increased distress and anxiety. 5. Donor reactions such as stress/physical pain will correlate with high salivary a-amylase levels throughout the process. PHASE II Key indicators that identify risk of HSC donation-related distress will be used to develop a paper-based psycho-educational resource that seeks to reduce related HSC donor distress and may be appropriate for integration within the health system. We aim to assess acceptability, feasibility and potential efficacy and inform the development of a large post-doctoral study which will be required to validate the tool.