Background: 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 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. All contacts with potential sibling donors are handled by the SCT (Stem Cell Transplantation) team. If the sibling is unwilling or unable to donate, HLA (Human Leukocyte Antigen) typing is not performed and the patient is told only that there is no possible donor among the siblings. To protect the sibling donor’s privacy, the physician and nurse assigned to the donor are never those responsible for the patient.

Objectives: The main aim of the present study was to evaluate the IC model by surveying adult potential sibling stem cell donors’ perceptions and views regarding the provision of information, staff and relatives’ influence over decision making, and the care provision by health professionals around the time of the decision whether to undergo HLA typing.

Methods: A questionnaire survey containing 30 questions was performed in 2010 gathering 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 questionnaire responses were analysed using descriptive statistical methods.

Results: 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.

Conclusion: The majority of the siblings was satisfied with the information and care provided, and found the aspects of information, care provision and support important. The IC model could provide the groundwork for other SCT units seeking to implement handling of potential adult sibling stem cell donors according to the international recommendations and guidelines published after the IC model was developed and introduced.