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Experiences and unmet needs of family members requested to donate haematopoietic stem cells to an ill relative: findings from a prospective multi-centre study

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Abstract

Background

Despite well-documented physical effects of haematopoietic stem cell (HSC) donation, far less attention has been focused on the psychosocial impact for family donors. This study aimed to better understand the psychosocial aspects of HSC donation by family members, focusing, in particular on their needs for information and supportive care.

Methods

Thirty-one adult HSC family donors from two clinical hospitals were interviewed before, during and 1 month after HSC donation. Interviews explored ambivalence, motivation, perceived pressure, preparedness, the donor-recipient relationship, information and support received and suggestions for improvement.

Results

Three main themes about the donation experience were identified: ‘call to arms’ (focused on the recipient, stressful urgency, making meaning of being a donor, decisional ambivalence), ‘proceeding with donation’ (living in limbo, unsettling uncertainty, pervasive pain, feeling supported) and ‘after the dust settles’ (feeling discarded, downplaying role, residual symptoms, dealing with adverse recipient outcomes). Underlying system and communication issues included time for consideration prior to donor work-up, management of confidentiality, information inadequacy and access to support. Donors wanted information about the emotional challenges specific to being a family donor, such as ways in which previous donors coped with recipient death. For donors whose recipient had died, the priority for improved care was follow-up support.

Conclusion

Our findings emphasise a gap in information and supportive care for family donors and the need for a protocol specifically designed to inform and support family donors before, during and after HSC donation.

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References

  1. Bray F, Ferlay J, Soerjomataram I, Siegel RL, Torre LA, Jemal A (2018) Global cancer statistics 2018: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J Clin 68(6):394–424. https://doi.org/10.3322/caac.21492

    Article  PubMed  Google Scholar 

  2. Yang B, Yu R, Cai L, Guo B, Chen H, Zhang H, He P, Lu X (2019) Haploidentical versus matched donor stem cell transplantation for patients with hematological malignancies: a systemic review and meta-analysis. Bone Marrow Transplant 54(1):99–122. https://doi.org/10.1038/s41409-018-0239-9

    Article  PubMed  CAS  Google Scholar 

  3. Australasian Bone Marrow Transplant Recipient Registry (2016) Australasian Bone Marrow Transplant Recipient Registry: annual data summary

  4. Flowers ME, Inamoto Y, Carpenter PA, Lee SJ, Kiem H-P, Petersdorf EW, Pereira SE, Nash RA, Mielcarek M, Fero ML (2011) Comparative analysis of risk factors for acute graft-versus-host disease and for chronic graft-versus-host disease according to National Institutes of Health consensus criteria. Blood 117(11):3214–3219. https://doi.org/10.1182/blood-2010-08-302109

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  5. Debals-Gonthier M, Siani C, Faucher C, Touzani R, Lemarié-Basset C, Chabannon C, Furst S, Devillier R, Harbi S, Castagna L (2018) Cost-effectiveness analysis of haploidentical vs matched unrelated allogeneic hematopoietic stem cells transplantation in patients older than 55 years. Bone Marrow Transplant 53(9):1096–1104. https://doi.org/10.1038/s41409-018-0133-5

    Article  PubMed  CAS  Google Scholar 

  6. Solh M, Zhang X, Connor K, Brown S, Solomon SR, Morris LE, Holland HK, Bashey A (2016) Factors predicting graft-versus-host disease–free, relapse-free survival after allogeneic hematopoietic cell transplantation: multivariable analysis from a single center. Biol Blood Marrow Transplant 22(8):1403–1409. https://doi.org/10.1016/j.bbmt.2016.04.006

    Article  PubMed  Google Scholar 

  7. Christopher KA (2000) The experience of donating bone marrow to a relative. Oncol Nurs Forum 27(4):693–700

    PubMed  CAS  Google Scholar 

  8. Kisch A, Bolmsjö I, Lenhoff S, Bengtsson M (2015) Being a haematopoietic stem cell donor for a sick sibling: adult donors’ experiences prior to donation. Eur J Oncol Nurs 19(5):529–535. https://doi.org/10.1016/j.ejon.2015.02.014

    Article  PubMed  Google Scholar 

  9. Pillay B, Lee SJ, Katona L, De Bono S, Warren N, Fletcher J, Burney S (2012) The psychosocial impact of haematopoietic SCT on sibling donors. Bone Marrow Transplant 47(10):1361–1365. https://doi.org/10.1038/bmt.2012.22

    Article  PubMed  CAS  Google Scholar 

  10. de Oliveira-Cardoso EA, dos Santos MA, Mastropietro AP, Voltarelli JC (2010) Bone marrow donation from the perspective of sibling donors. Rev Lat Am Enfermagem 18(5):911–918. https://doi.org/10.1590/S0104-11692010000500011

    Article  PubMed  Google Scholar 

  11. Williams S, Green R, Morrison A, Watson D, Buchanan SS (2003) The psychosocial aspects of donating blood stem cells: the sibling donor perspective. J Clin Apher 18(1):1–9. https://doi.org/10.1002/jca.10042

    Article  PubMed  Google Scholar 

  12. Labott S, Pfammatter A (2014) The influence of the donor–recipient relationship on related donor reactions to stem cell donation. Bone Marrow Transplant 49(6):831–835. https://doi.org/10.1038/bmt.2014.38

    Article  PubMed  CAS  Google Scholar 

  13. Kisch AM, Forsberg AJ (2017) The core of sibling stem cell donation – a grounded theory study. Open Nurs J 11:73–83. https://doi.org/10.2174/1874434601711010073

    Article  PubMed  PubMed Central  Google Scholar 

  14. Kisch AM, Forsberg AJ (2017) Sibling stem cell donors’ perceptions of experiences of donation. Clin Nurs Stud 5(4):24–31. https://doi.org/10.5430/cns.v5n4p2315

    Article  Google Scholar 

  15. Chang G, Mcgarigle C, Koby D, Antin JH (2003) Symptoms of pain and depression in related marrow donors: changes after transplant. Psychosomatics 44(1):59–64. https://doi.org/10.1176/appi.psy.44.1.59

    Article  PubMed  Google Scholar 

  16. Van Walraven S, Ball L, Koopman H, Switzer G, Ropes-de Jong C, de Jong A, Bredius R, Egeler R (2012) Managing a dual role—experiences and coping strategies of parents donating haploidentical G-CSF mobilized peripheral blood stem cells to their children. Psychooncology 21(2):168–175. https://doi.org/10.1002/pon.1885

    Article  PubMed  Google Scholar 

  17. Zomerdijk N, Turner JM, Hill GR (2019) Adult-related haematopoietic stem cell donor experiences and the provision of information and psychosocial support: a systematic literature review. Eur J Cancer Care 28(3):e12932. https://doi.org/10.1111/ecc.12932

    Article  Google Scholar 

  18. Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res Psychol 3(2):77–101. https://doi.org/10.1191/1478088706qp063oa

    Article  Google Scholar 

  19. Braun V, Clarke V (2013) Successful qualitative research: a practical guide for beginners. Sage, London

    Google Scholar 

  20. Clare S, Mank A, Stone R, Davies M, Potting C, Apperley J (2010) Management of related donor care: a European survey. Bone Marrow Transplant 45(1):97–101. https://doi.org/10.1038/bmt.2009.117

    Article  PubMed  CAS  Google Scholar 

  21. Eckenrode J (1991) The social context of coping. Plenum, New York

    Book  Google Scholar 

  22. Bandura A (1988) Self-efficacy conception of anxiety. Anxiety Res 1(2):77–98

    Article  Google Scholar 

  23. Leitner G, Baumgartner K, Kalhs P, Biener D, Greinix H, Hoecker P, Worel N (2009) Regeneration, health status and quality of life after rhG-CSF-stimulated stem cell collection in healthy donors: a cross-sectional study. Bone Marrow Transplant 43(5):357–363. https://doi.org/10.1038/bmt.2008.335

    Article  PubMed  CAS  Google Scholar 

  24. Munzenberger N, Fortanier C, Macquart-Moulin G, Faucher C, Novakovitch G, Maraninchi D, Moatti J, Blaise D (1999) Psychosocial aspects of haematopoietic stem cell donation for allogeneic transplantation: how family donors cope with this experience. Psychooncology 8(1):55–63

    Article  CAS  Google Scholar 

  25. Wanner M, Bochert S, Schreyer IM, Rall G, Rutt C, Schmidt A (2009) Losing the genetic twin: donor grief after unsuccessful unrelated stem cell transplantation. BMC Health Serv Res 9(1). https://doi.org/10.1186/1472-6963-9-2

  26. O’Donnell PV, Pedersen TL, Confer DL, Rizzo JD, Pulsipher MA, Stroncek D, Leitman S, Anderlini P (2010) Practice patterns for evaluation, consent and care of related donors and recipients at hematopoietic cell transplant centers in the United States. Blood 115(24):5097–5101. https://doi.org/10.1182/blood-2010-01-262915

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  27. Polomeni A, Bompoint C, Labopin M, Badoglio M, Battipaglia G, Eeltink C, Liptrott S, Babik A, Murray J, Stringer J (2020) Hematopoietic cell transplant nurse coordinators’ perceptions of related donor care: a European survey from the EBMT Nurses Group. Bone Marrow Transplant 55(3):623–632. https://doi.org/10.1038/s41409-019-0686-y

    Article  PubMed  CAS  Google Scholar 

  28. Anthias C, Shaw B, Kiefer D, Liesveld J, Yared J, Kamble R, D’Souza A, Hematti P, Seftel M, Norkin M (2016) Significant improvements in the practice patterns of adult related donor care in US transplantation centers. Biol Blood Marrow Transplant 22(3):520–527. https://doi.org/10.1016/j.bbmt.2015.11.008

    Article  PubMed  Google Scholar 

  29. Coluccia P, Crovetti G, Del Fante C, Dallavalle FM, Laszlò D, Ferremi P, Marenchino D, Santoleri L, De Filippo C, Mattana F (2012) Screening of related donors and peripheral blood stem cell collection practices at different Italian apheresis centres. Blood Transfus 10(4):440–447. https://doi.org/10.2450/2012.0140-11

    Article  PubMed  PubMed Central  Google Scholar 

  30. Zomerdijk N, Turner J, Hill GR, Gottlieb D (2019) Adult related haematopoietic stem cell donor care: views of transplant nurses. Eur J Oncol Nurs 41:56–63. https://doi.org/10.1016/j.ejon.2019.05.012

    Article  PubMed  Google Scholar 

  31. Weinman J (1990) Providing written information for patients: psychological considerations. Sage, London

    Google Scholar 

  32. Griffin J, McKenna K, Tooth L (2003) Written health education materials: making them more effective. Aust Occup Ther J 50(3):170–177. https://doi.org/10.1046/j.1440-1630.2003.00381.x

    Article  Google Scholar 

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Acknowledgments

The authors thank the family donors who willingly participated in this study. They also thank Annette Barnes, Stephanie Deren and Gillian Huang at the Royal Brisbane & Women’s Hospital and Westmead Hospital for referring donors to the study.

Funding

This work was supported by the Australian Government Research Training Program Scholarship, the Royal Brisbane & Women’s Hospital Foundation Postgraduate Scholarship and the Royal Brisbane & Women’s Hospital Foundation Diamond Care Grant.

Author information

Authors and Affiliations

  1. Faculty of Medicine, University of Queensland, Brisbane, QLD, Australia

    Nienke Zomerdijk, Jane Turner & Geoffrey R. Hill

  2. Royal Brisbane and Women’s Hospital, Brisbane, QLD, Australia

    Nienke Zomerdijk, Jane Turner & Geoffrey R. Hill

  3. Bone Marrow Transplant Laboratory, QIMR Berghofer Medical Research Institute, Brisbane, QLD, Australia

    Nienke Zomerdijk & Geoffrey R. Hill

  4. School of Psychological Sciences, University of Melbourne, Melbourne, VIC, Australia

    Nienke Zomerdijk

  5. Clinical Research Division, Fred Hutchinson Cancer Research Center, Seattle, WA, USA

    Geoffrey R. Hill

  6. Blood and Bone Marrow Transplant Unit, Westmead Hospital, Sydney, NSW, Australia

    David Gottlieb

  7. Sydney Medical School, University of Sydney, Sydney, NSW, Australia

    David Gottlieb

Authors
  1. Nienke Zomerdijk
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  2. Jane Turner
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  3. Geoffrey R. Hill
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  4. David Gottlieb
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Contributions

All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by Nienke Zomerdijk, Jane Turner, Geoffrey R. Hill and David Gottlieb. The first draft of the manuscript was written by Nienke Zomerdijk, and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Nienke Zomerdijk.

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Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committees of the University of Queensland (Ref: 2016001438), the Royal Brisbane & Women’s Hospital (Ref: 16/QRBW/207) and the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

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Zomerdijk, N., Turner, J., Hill, G.R. et al. Experiences and unmet needs of family members requested to donate haematopoietic stem cells to an ill relative: findings from a prospective multi-centre study. Support Care Cancer 29, 635–644 (2021). https://doi.org/10.1007/s00520-020-05520-y

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  • DOI: https://doi.org/10.1007/s00520-020-05520-y

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