title: 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.
authors: Department of Haematology, Skåne University hospital, Lund, Sweden. annika.kisch@mah.se
authors: A
authors: A
authors: Kisch
authors: S
authors: S
authors: Lenhoff
authors: M
authors: M
authors: Bengtsson
authors: I
authors: I
authors: Bolmsjö
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D003219:Confidentiality; D003625:Data Collection; D018380:Hematopoietic Stem Cell Transplantation / Q000941:ethics* / Q000379:methods*; D006650:Histocompatibility Testing / Q000379:methods; D006801:Humans; D019520:Living Donors / Q000941:ethics / Q000523:psychology*; D008875:Middle Aged; D035781:Siblings / Q000523:psychology*; D011795:Surveys and Questionnaires; D055815:Young Adult