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Potential adult sibling stem cell donors’ perceptions and opinions regarding an information and care model
Malmö högskola, Faculty of Health and Society (HS). Department of Haematology, Skåne University hospital, Lund, Sweden.
Department of Haematology, Skåne University hospital, Lund, Sweden.
Malmö högskola, Faculty of Health and Society (HS), Department of Care Science (VV).ORCID iD: 0000-0002-8884-1490
Malmö högskola, Faculty of Health and Society (HS), Department of Care Science (VV).
2013 (English)In: Bone Marrow Transplantation, ISSN 0268-3369, E-ISSN 1476-5365, Vol. 48, no 8, p. 1133-1137Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
Nature Publishing Group, 2013. Vol. 48, no 8, p. 1133-1137
Keywords [en]
potential sibling donors, haematopoietic stem cell donation, information and care model, donor confidentiality, quantitative study
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:mau:diva-3979DOI: 10.1038/bmt.2012.283ISI: 000322819900020PubMedID: 23334271Scopus ID: 2-s2.0-84881370732Local ID: 15309OAI: oai:DiVA.org:mau-3979DiVA, id: diva2:1400803
Available from: 2020-02-28 Created: 2020-02-28 Last updated: 2024-02-19Bibliographically approved
In thesis
1. Allogeneic stem cell transplantation: patients’ and sibling donors’ perspectives
Open this publication in new window or tab >>Allogeneic stem cell transplantation: patients’ and sibling donors’ perspectives
2015 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Allogeneic haematopoietic stem cell transplantation (hereafter HSCT) is an established treatment which offers a potential cure for a variety of diseases, mainly haematological malignancies. However, the treatment is also associated with significant risks of acute complications and late side effects, including mortality. The donor is either a relative, most often a sibling, or an unrelated registry donor. Methods for donating stem cells are bone marrow harvesting or peripheral blood stem cell collection. The most common and transient side effects from stem cell donation are fatigue, headache, bone and muscle pain. Major side effects are rare but there is a small risk of fatalities and serious adverse events. To facilitate the provision of adequate information and care of patients undergoing HSCT and their sibling donors there is a need to explore and study their situations and experiences. This thesis aims to investigate patients’ and sibling donors’ perspectives of HSCT.The first study investigated changes in the patients’ quality of life (QoL) from before HSCT to 100 days and 12 months after the transplantation, and identified factors associated with the changes. The study was completed by 40 patients who answered the questionnaires (FACT-BMT and FACIT-Sp) on all three occasions. The majority of the dimensions covered in QoL deteriorated from before and up to 100 days and 12 months after HSCT, except for the emotional well-being which improved. The factors associated with reduced QoL over time were significant infections, female gender and transplantation with stem cells from a sibling donor. Factors associated with improved emotional well-being over time were absence of significant infections and marital status ‘other than married/cohabiting’.In the second study an information and care model (IC model) for potential sibling stem cell donors was evaluated. A questionnaire survey was answered by 148 siblings who had been informed about and asked to undergo HLA typing by the IC model. The majority of the potential sibling donors were satisfied with the information and care they had received. However, areas for improvement were highlighted, such as a wish to have the results from the HLA typing conveyed through personal contact and that the complicating influence of health professionals and relatives on their decision to undergo HLA typing and possible donation could be prevented.In the third study ten HSCT patients were interviewed immediately before transplantation regarding their experiences of having a sibling as donor. The results, with the main theme Being in no man’s land, show that the patients are in a complex situation before transplantation, experiencing a mixture of emotions and thoughts. In the fourth study ten sibling donors, where the recipients were the participants in Study III, were interviewed regarding their experiences before donation of being a stem cell donor for a sick sibling. The main theme, Being a cog in a big wheel, in the results shows that the sibling donors go through a complex process before donation, a situation they have not volunteered for but have got into accidently, experiencing a mixture of emotions and thoughts. The results also show that the sibling donors do not usually reveal their thoughts and emotions about being a donor to anyone. The patients’ and sibling donors’ experiences can be seen to be connected to each other, however, they have not usually talked to each other about their emotions and thoughts. To conclude, HSCT patients’ overall QoL and the majority of the dimensions of QoL deteriorated from before until 100 days and 12 months after HSCT, while their emotional well-being improved. The privacy and free choice of potential sibling donors have to be respected and the information and care of patients and their sibling donors should be kept separate. Health professionals should bear in mind that both patients with a sibling as donor and sibling donors are in complex situations before transplantation and donation, experiencing a mixture of emotions and thoughts. Further, it is important to individualize the information and care for HSCT patients and their sibling donors in a supportive and professional manner.

Place, publisher, year, edition, pages
Malmö University, Faculty of Health and Society, 2015. p. 101
Series
Malmö University Health and Society Dissertations, ISSN 1653-5383 ; 2
Keywords
Allogeneic haematopoietic stem cell transplantation, Confidentiality, Information and care model, Quality of life, Perspectives, Sibling donor, Stem cell donation
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:mau:diva-7311 (URN)18492 (Local ID)978-91-7104-401-3 (ISBN)978-91-7104-402-0 (ISBN)18492 (Archive number)18492 (OAI)
Note

Note: The papers are not included in the fulltext online.

Available from: 2020-02-28 Created: 2020-02-28 Last updated: 2024-03-15Bibliographically approved

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Bengtsson, MarietteBolmsjö, Ingrid

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