Creation and Implementation of a Structured Outreach Program to Address Unmet Psychosocial, Financial and Emotional Needs of Related Stem Cell Donors Utilizing Data Analysis from a Qualitative Research Study

Psychosocial support is an imperative component of the treatment process for patients undergoing bone marrow transplant (BMT).  This assertion is supported empirically by the work of Hochhausen et al. (2007)¹ and Molassiotis, Van Den Akker, Milligan, Goldman, and Boughton (1996).²  Patients going through BMT are assigned a social worker to provide for their emotional, financial and psychosocial needs.

An unchartered aspect of the BMT process is the impact, both emotionally and psychosocially, on the related donors who provide stem cells or marrow to their sick family members.  A review of existing literature unearthed some applicable studies, but overall there is a dearth of sound research regarding the experience of related donors.  Chang, McGarigle, Koby and Antin examined the changes in pain and depressive symptoms in related donors in a 2003 study³ and a substantial amount of information about the experience of unrelated stem cell donors and solid organ donors has been published. 

Our hypothesis was that related stem cell donors have unmet emotional and psychosocial needs and would benefit from structured education and support within the framework of an existing BMT program.  In order to test the validity of this hypothesis we developed a questionnaire to assess needs and issues that arise for donors throughout the transplant process as well as elicit feedback about their emotional journey.  The questionnaire was sent to a sample of related donors (N=57) and the response rate was 76%.  Data from the questionnaires was coded and analyzed for relevant correlations; p-values were calculated using the Fisher’s exact test or the Chi square test.

Results indicated that a majority of donors experience at least a medium level of anxiety and that certain characteristics such as pressure to donate and existing financial issues increased anxiety.   Other significant findings were that donors with a close relationship with the recipient prior to donation were more satisfied with the amount of information received throughout the process and put less consideration into deciding to be a donor.  The results of this qualitative study provide justification for an increase in the level of support provided to related stem cell donors.

¹Hochhausen, N., Altmaier, E.M., McQuellon, R., Davies, S.M., Papadopolous, E., Carter S., & Henslee-Downey, J. (2007). Social support, optimism, and self-efficacy predict physical and emotional well-being after bone marrow transplantation. Journal of Psychosocial Oncology, 25, 87-101.

²Molassiotis, A., Van Den Akker, O., Milligan, D.W., Goldman, J.M., & Boughton, B.J. (1996). Psychological adaptation and symptom distress in bone marrow transplant recipients. Psycho-Oncology, 5,9-22.

³Chang, G., McGarigle, C., Koby, D., & Antin, J.H. (2003).  Symptoms of pain and depression in related marrow donors: Changes after transplant.  Psychosomatics, 44(1), 59-64.