Potential adult sibling stem cell donors’ perceptions and opinions regarding an information and care model

Abstract

The first international recommendations and guidelines for the care of sibling stem cell donors were established in 2010, and have not yet been evaluated. However, a model for information and care of adult potential sibling stem cell donors (the IC model) developed and introduced at the Skåne University Hospital, Lund, Sweden, in 2005 conforms closely to them. The IC model aims to protect the privacy of potential donors, support and respect their free choice, and identify quickly those unwilling or unable to donate and thus minimize delay in seeking alternative donors. To evaluate the IC model a questionnaire survey in 2010 gathered the perceptions and views on information provision; influences over decision making; and care provision under the IC model of 148 adult siblings informed about SCT donation, and asked to undergo HLA-typing since September 2005 at the hospital. The results suggest the IC model works well but highlights areas for improvement, such as in delivery of HLA typing results to non-matched siblings, and a need to further prevent complicating influence from health professionals and relatives on the decision to undergo HLA typing. Thus improved, the IC model could provide the groundwork for other SCT units seeking to implement the recommendations and guidelines.

Adult‐related haematopoietic stem cell donor experiences and the provision of information and psychosocial support: A systematic literature review

“…Almost half of the donors interviewed were asked to donate by the recipient or another relative (Williams et al, ). Donors reported that the influence from relatives both facilitated and complicated their decision to undergo HLA typing (Kisch et al, ).…”

“…Kisch et al () reported that information and positive care provision from Health Professionals (HP) were perceived as being important by potential donors prior to deciding whether to undergo HLA typing. The method for delivering HLA typing results varied; some donors received their typing results by regular mail; others received this information by telephone from a HP or from the recipient or another relative.…”

“…Most donors reported that they appreciated prior contact with the hospital and that the information obtained from HP staff was helpful (Fortanier et al, ; Kisch et al, ; Labott & Pfammatter, ; Wiener et al, ; Williams et al, ). However, in seven of the studies included, donors wanted more information to prepare themselves for donation (Bredeson et al, ; Christopher, ; Kisch et al, ; Pillay et al, ; van Walraven et al, ; Wiener et al, ; Williams et al, ). Some donors believed they were unprepared for the severity or duration of pain post‐donation (Christopher, ).…”

“…A total of nine studies mentioned some aspect regarding the availability, sources and timing of information and support given to and received by adult‐related HSC donors (see Table ). Healthcare professionals, including Haematologists and Donor Coordinators, were mentioned frequently (Christopher, ; Kisch et al, ; Pillay et al, ; Williams et al, ). Other studies used more global terms such as “medical team,” “HP team,” “SCT team” and “transplant team” and did not specify individual staff members involved in the provision of information and care (Kisch et al, ; Labott & Pfammatter, ; de Oliveira‐Cardoso et al, ; Wiener et al, ).…”

“…Of the sixteen studies examined, only three reported this data. Two studies reported that donors were cared for by a physician and nurse not involved in treating the related recipient (Kisch et al, ) while in another study, most donors received information from their related recipient’s Haematologist (Pillay et al, ).…”