|  | | |  | | Becoming a donor is a rewarding experience but is not without considerations. The article focuses on the specific management of related donors, where nursing practice should include support and information for relatives who are part of the process of stem cell donation
 | Author biography |
|  | | Barry Quinn, MSc, BD, Bacc Phil, RN, is Lecturer Practitioner at the School of Cancer Nursing & Rehabilitation, The Royal Marsden NHS Trust. Barry began working in cancer care 20 years ago, as a Catholic priest at Our Lady’s Hospice in Dublin. He trained as nurse, working at University College London, in both oncology and haematology. He has written for the nursing press about sexuality and fertility matters in cancer, donor issues, and supporting and addressing patients’ experiences while living with cancer.In 2001 he was awarded the Tom O’Donnell award for the best nursing abstract at the European Group for Blood and Marrow Transplantation Conference in Mastricht. He is President of the European Group for Blood and Bone Marrow Transplantation Nurses Group EBMT-NG. Barry is currently undertaking a PhD. |
"To care deeply for another person is to care ethically in a responsive way. This means listening carefully to the other person, but also asking the pertinent questions" (Tschudin 1994)
The opportunity to help another person through donating one’s bone marrow can be seen as a wonderful gift. It is not uncommon to hear donors say that it one of the most important acts that they have ever made. Because of the high degree of morbidity and mortality in some transplants, without adequate support and guidance donors may blame themselves for graft failure, Graft versus Host Disease or other complications. The care of donors has been guided and directed by such organisations as the World Marrow Donor Organisation (WMDA) and national groups such as the Anthony Nolan Trust (UK) and The British Bone Marrow Registry (BBMR). The WMDA have set out very clear guidelines that protect the rights of the donor while recognising the needs of patients (Cleaver et al 1997).
Organisations such as WMDA strongly advocate that the donor needs to be cared for by a team not directly involved in the recipient’s transplant (Cleaver et al 1997), however this is not always feasible with related donors. Related donors who are cared for by members of the transplant team may not always get the support he/she requires. It is apparent that there are no clear directives in the care of donors who are related to the recipient. Mc Namara (2001) rightly states that the time of a cancer diagnosis can be a time of uncertainty and fear for the person with cancer and their family members. Often it is in this midst of this uncertainty that the issue of donating is first addressed. Nurses need to be aware that at times related donors may feel a degree of coercion either by the transplant team or by family members into donating bone marrow or stem cells, or they may not fully understand what they have consented to.
The nurse and team need to be aware that some of the investigations may occasionally raise difficult paternity issues. Other results from the viral screening, including Human Immunodeficiency Virus (HIV) and Hepatitis, as well as the possible side effects from the treatments and collection process, may have a long lasting affect on the donor. Other ethical issues include informed consent for minors and persons with learning difficulties who may be approached to be donors (Buchsel 1999). Sensitivity is required to the issues that may arise from cultural and religious beliefs surrounding the donation process. Some family members who are keen to donate may experience disappointment and distress, due to being ineligible to donate because of age or illness.
While many larger transplant centres have appointed a donor co-ordinator to support relatives who may become donors other centres may not have similar resources. While many relatives are very happy to donate, the health care team has a duty to care for such donors not only during the harvesting phase but also following the transplant procedure. Nurses need to be able to listen and to respond to the concerns of all donors and to be aware of their fears, hopes and at times unrealistic dreams. Nurses involved in transplant care need to ask themselves what support they offer a donor when the recipient becomes very ill or perhaps dies following the transplant? It may help a transplant team to explore with donors what they find helpful or unhelpful. A related donor who has previously experienced the donating procedure may be willing to talk to other concerned potential donors.
The following outlines the general pattern of the donation process involving family members:
 | Need for possible donor identified |
| Potential donor is identified and approached to ascertain his/her willingness to be tested as a possible donor. This initial approach should be done by someone outside of the transplant team and not in the presence of the recipient |
| If the potential donor agrees to testing then he/she is given further guidance on what donation may mean |
| Following informed consent a blood test is taken to determine whether the donor is a match, this involves tissue typing also known as HLA (Human Leucocyte Antigen) matching, especially the antigens HLA-A, HLA-B & HLA-DR |
| If found to be a match, the potential donor should be informed first |
| If he/she agrees to continue with donation process, further support given and consultation with physician to determine whether happy to go ahead and donor is fit and well (this will include a full medical and screening for possible exposure to the following: HIV, Hepatitis, Syphilis) |
| Harvesting will involve collecting Bone Marrow (BM) or Peripheral blood stem cells (PBSC). (Some centres may use cord blood) |
| Collecting BM involves inserting a needle into the iliac crests or the sternum and removing bone marrow under general anaesthetic, the procedure usually last 1-2 hours. Side effects may include: tiredness, discomfort around incision site and possible reaction to anaesthetic (rare) |
| PBSC collection requires the donor to receive a daily dose of Granulocyte Colony Stimulating Factor GCSF (growth factor) subcutaneously for five days to increase the number of circulating stem cells in the peripheral blood. The donor then undergoes a process called apheresis lasting 2-3 hours (usually on two occasions), whereby stem cells are removed from the peripheral blood Side effects may include: flu like symptoms, muscle or bone pain, headache, breathlessness, splenic pain and infarction (very rare) |
| The BM or PBSC is then infused into the patient via an intravenous infusion |
| Time of recovery begins |
| As well as being supported throughout the process the donor may need continuing support post the transplantation |
 | References: |
Buchsel, P. (1999) Bone Marrow Transplantation. In. Miaskowski, C. & Buchsel, P. (Eds) Oncology Nursing: Assessment and Clinical care. Mosby. St Louis. 143-186
Cleaver, S.A, Warren, P, Kern, M. et al (1997) Special Report: Donor Work-up and Transport of Bone Marrow. World Marrow Donor Association
Mc Namara, (2001) Fragile Lives: Death, Dying and Care. Allen & Unwin. Sydney
Tschudin, V. (1994) The Emotional Cost of Caring. In. Brykcyzynska, G. (Ed) Caring: The Compassion and Wisdom of Nursing. Edward Arnold. London pp.155-179
| Useful sites: |
The Anthony Nolan Trust
The National Blood Service
Blood Marrows Donors Worldwide
The European Group for Blood and Bone Marrow Transplantation (EBMT)
| Useful Leukaemia Research sources: |
| Donating Stem Cells |
| Seven Steps |
| Bone Marrow and Stem Cell Transplantation |
Order these publications by email: medicalinfo@lrf.org.uk |
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