Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

  • Original Article
  • Published:

Information About Transplants

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

Bone Marrow Transplantation volume 48, pages 1133–1137 (2013)Cite this article

Subjects

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.

This is a preview of subscription content, access via your institution

Access options

Buy this article

  • Purchase on Springer Link
  • Instant access to full article PDF
Buy now

Prices may be subject to local taxes which are calculated during checkout

Similar content being viewed by others

References

  1. Christopher KA . The experience of donating bone marrow transplantation to a relative. Oncol Nurs Forum 2000; 27: 693–700.

    CAS  Google Scholar 

  2. Davies S . Bone marrow transplantation raises issues of privacy. Br Medical J 1997; 314: 1356.

    Article  Google Scholar 

  3. Horowitz MM, Confer DL . Evaluation of hematopoietic stem cell donors. Hematology Am Soc Hematol Educ Program 2005; 1: 469–475.

    Article  Google Scholar 

  4. Knibbe ME, Maeckelberghe EL, Verkerk MA . Confounders in voluntary consent about living parental liver donation: no choice and emotions. Med Health Care Philos 2007; 10: 433–440.

    Article  CAS  Google Scholar 

  5. Switzer GE, Dew MA, Magistro CA, Goycoolea JM, Twillman RK, Alter C et al. The effects of bereavement on adult sibling bone marrow donors’ psychological well-being and reactions to donation. Bone Marrow Transplant 1998; 21: 181–188.

    Article  CAS  Google Scholar 

  6. van Walraven SM, Ball LM, Koopman HM, Switzer GE, Ropes-de Jong CM, de Jong A et al. Managing a dual role--experiences and coping strategies of parents donating haploidentical G-CSF mobilized peripheral blood stem cells to their children. Psycho-Oncology 2012; 21: 168–175.

    Article  CAS  Google Scholar 

  7. Kisch A, Dykes J, Lindmark A, Lenhoff S . A proposed plan for the management of adult sibling donors [letter]. Bone Marrow Transplant 2008; 42: 357–358.

    Article  CAS  Google Scholar 

  8. Clare S, Mank A, Stone R, Davies M, Potting C, Apperley JF, Research sub-committee of the EBMT nurses group. Management of related donor care: a European survey. Bone Marrow Transplant 2010; 45: 97–101.

    Article  CAS  Google Scholar 

  9. Foundation for the Accreditation of Cellular Therapy and Joint Accreditation Committee—ISCT and EBMT (FACT-JACIE) International standards for cellular therapy product collection, processing, and administration, 5th edn, 2012. Available at www.jacie.org2012.

  10. O’Donnell PV, Pedersen TL, Confer DL, Rizzo JD, Pulsipher MA, Stroncek D et alDonor health and safety working committee from center for international blood and marrow transplant research (CIBMTR). Practice patterns for evaluation, consent, and care of related donors and recipients at hematopoietic cell transplantation centers in the United States. Blood 2010; 115: 5097–5101.

    Article  Google Scholar 

  11. van Walraven SM, Nicoloso-de Faveri G, Axdorph-Nygell UA, Douglas KW, Jones DA, Lee SJ et alWMDA ethics and clinical working groups. Family donor care management: principles and recommendations. Bone Marrow Transplant 2010; 45: 1269–1273.

    Article  CAS  Google Scholar 

  12. Wiener LS, Steffen-Smith E, Battles HB, Wayne A, Love CP, Fry T . Sibling stem cell donor experience at a single institution. Psycho-Oncology 2008; 17: 304–307.

    Article  Google Scholar 

  13. Williams S, Green R, Morrison A, Watson D, Buchanan S . The psychosocial aspects of donating blood stem cells: the sibling donor perspective. J Clin Apher 2003; 18: 1–9.

    Article  Google Scholar 

  14. Streiner DL, Norman GR . Health Measurement Scale. A Practical Guide to their Development and Use 4th edn. Oxford University Press: New York, 2008.

    Book  Google Scholar 

  15. Brace I . Questionnaire Design: How to Plan, Structure and Write Survey Material for Effective Market Research 2nd edn. Kogan Page: London, 2008.

    Google Scholar 

  16. Takita M, Tanaka Y, Kodama Y, Murashige N, Hatanaka N, Kishi Y et al. Data mining of mental health issues of non-bone marrow donor siblings. J Clin Bioinforma 2011; 1: 1–7.

    Article  Google Scholar 

  17. Bredeson C, Leger C, Couban S, Simpson D, Huebsch L, Walker I et al. An evaluation of the donor experience in the Canadian multicenter randomized trial of bone marrow versus peripheral blood allografting. Biol Blood Marrow Transplant 2004; 10: 405–414.

    Article  Google Scholar 

  18. Fortanier C, Kuentz M, Sutton L, Milpied N, Michalet M, Macquart-Moulin G et al. Healthy sibling donor anxiety and pain during bone marrow or peripheral blood stem cell harvesting for allogeneic transplantation: results of a randomised study. Bone Marrow Transplant 2002; 29: 145–149.

    Article  CAS  Google Scholar 

Download references

Acknowledgements

We thank all the persons who willingly took part in this study answering the questionnaire.

Author information

Authors and Affiliations

  1. Department of Haematology, Skåne University hospital, Lund, Sweden

    A Kisch & S Lenhoff

  2. Faculty of Health and Society, Malmö University, Malmö, Sweden

    A Kisch, M Bengtsson & I Bolmsjö

Authors
  1. A Kisch
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. S Lenhoff
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. M Bengtsson
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. I Bolmsjö
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to A Kisch.

Ethics declarations

Competing interests

The authors declare no conflict of interest.

Additional information

Supplementary Information accompanies the paper on Bone Marrow Transplantation website

Supplementary information

Rights and permissions

Reprints and permissions

About this article

Cite this article

Kisch, A., Lenhoff, S., Bengtsson, M. et al. Potential adult sibling stem cell donors’ perceptions and opinions regarding an information and care model. Bone Marrow Transplant 48, 1133–1137 (2013). https://doi.org/10.1038/bmt.2012.283

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1038/bmt.2012.283

Keywords

This article is cited by

Search

Advanced search

Quick links