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09 Jun 2021

Diversity, Dialogue, and Altruism - World Congress of Psycho-Oncology, May 2021

  • University of Melbourne
  • VCCC Alliance

The unique challenges faced by family stem cell donors

 

Dr Nienke Zomerdijk, Postdoctoral Research Fellow, Psycho-Oncology, Melbourne School of Psychological Sciences, and Victorian Comprehensive Cancer Centre alliance has won the International Psycho-Oncology Society’s presentation award at this year’s conference.

The conference, held last month in Kyoto, Japan was attended virtually by psychologists, clinicians, and palliative and supportive care professionals from over 50 countries.

“I don’t want my brother to die”: Experiences and unmet needs of family members requested to donate haematopoietic stem cells to an ill relative

Nienke conducted a multi-centre prospective study of the experiences and needs of family members requested to donate stem cells to an ill relative undergoing stem cell transplantation for a haematological malignancy.

Through her work in the stem cell transplantation setting, she was aware of the psychosocial implications faced by family donors and their expressed concerns about the emotional challenges of donating to a relative.

Siblings, parents, and children are in the position of fulfilling both family member and donor roles, which may entail psychological vulnerability. As family members, they experience the challenges of a life-threatening illness of their family member. As donors, their cells offer the best possibility of ensuring the recipient’s survival.

"In this study, we found that the vast majority of family members were glad to have the opportunity to help their ill relative. On the other hand, not all family donors had a positive relationship with their relative and complex family dynamics emerged as important determinants shaping donors’ experiences," said Nienke.

"Despite this, family members proceeded even when their relationship was not emotionally positive. Given their knowledge that their decision directly impacts their ill relative's medical status, these family members perceived they had 'no choice but to donate', causing ambivalence and distress. 

"After donation, high levels of distress were connected with their ill relative's health status. Family members expressed a strong sense of responsibility and guilt if their relative’s health continued to deteriorate, or worse, if their relative died. These donors looked for reassurance that the outcome was beyond their control and expressed a clear desire for psychological support following the death of their recipient."

Nienke explains that these are important findings in light of the increasing demand for family members in the stem cell transplant setting. "While the anticipated benefits of transplantation may motivate family members, the final outcome is not always the one hoped for.

"In this process, we need to attend to the welfare of both the recipient and the donor."

Differences in donor experience highlighted

“A key underlying issue here is a lack of guidance and standards in family stem cell donor care,” says Nienke.

"Detailed standardised guidelines established by international donor registries safeguard the welfare of unrelated volunteer donors. However, this is not the case for family donors, for whom lack of policy and guidelines remains a significant evidence-based practice gap. Our findings point to the urgent need to bring care guidelines for family donors in line with those for unrelated volunteer donors."

Nienke

Dr Nienke Zomerdijk, Postdoctoral Research Fellow

Meeting the unique needs of family stem cell donors

“We found donors wanted information about issues specific to being a family donor, including ways in which previous donors had coped with emotional challenges such as recipient death. They also wanted information about issues facing the transplant recipient, including complications such as graft-versus-host-disease. In response to these expressed needs, we developed a psycho-educational resource Donating to your Relative for family donors which was enthusiastically endorsed by family donors and transplant professionals. We hope to work together with transplant professionals to further refine and deliver the resource more extensively across transplant centres and in additional formats.

Read more. Please contact Dr Nienke Zomerdijk for more information. 

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