| 1. |
- Kisch, Annika, et al.
(författare)
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Potential adult sibling stem cell donors’ perceptions and opinions regarding an information and care model
- 2013
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Ingår i: Bone Marrow Transplantation. - : Nature Publishing Group. - 0268-3369 .- 1476-5365. ; 48:8, s. 1133-1137
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Tidskriftsartikel (refereegranskat)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.
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| 2. |
- Kisch, Annika, et al.
(författare)
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Potential adult sibling stem cell donors’ perceptions and opinions regarding an information and care model
- 2013
-
Ingår i: Bone Marrow Transplantation. - : Nature Publishing Group. - 0268-3369 .- 1476-5365. ; 48:S2, s. S471-S472
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- 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.
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| 3. |
- Wendt, Christel, et al.
(författare)
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The Experience of Oral and Written Information about Sex and Relationships in adults Treated For Malignant Blood Diseases
- 2015
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Ingår i: Bone Marrow Transplantation. - : Nature Publishing Group. - 0268-3369 .- 1476-5365. ; 50:Suppl 1, s. S514-S514
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: One of the most important needs of cancer patients is to receive thorough and honest information about their disease, treatment and chance for cure. Additionally, important aspects are possible treatment related to side effects and also the impact on patient’s sexual health. Most patients consider it is important to address the problems of sexual nature with health professionals, but results show that nurses and physicians do not address the issues of sexuality in the context of cancer therapy. The purpose of this study was to assess how information worked in practice, both oral and written. This study is also a result from an earlier presentation of the booklet ‘‘Sex and relationships in the treatment of blood diseases’’ as a poster at the EBMT in Vienna 2010. Method: A study specific questionnaire was developed for patients with malignant blood diseases. It contained questions about information on sex and relationships as well as on the developed booklet. Results: As to our knowledge this is the first study in Sweden examining patients’ experience of oral and written information about sexual issues. Two hundred and sixteen patients participated in this descriptive study. It included 135 men and 80 women with a mean age of 59 years. Most of the patients had not received information about sexual issues and a majority also considered oral information as important as written information. The result showed a very low input from health professionals. Only sixteen nurses (8.5%) and ten physicians (5.3%) had given oral information to the patients. The vast majority of patients were highly satisfied with the booklet, and considered it as being useful in general. Conclusion: It is concluded that patient with malignant blood diseases do not get information about sex and relationships as much as they wanted. Therefore health professionals need necessary training to feel confident in the conversation about sexuality and knowing how treatment affect sexuality. The result also showed that patients wanted written information and that the booklet could be helpful in communication with health professionals. Disclosure of Interest: None Declared.
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