All participants completed all items. Bosi A, Bartolozzi B . (2020), Bulletin du Cancer Blood 2009; 114: 3757–3763. The symptom experience in the first 100 days following allogeneic hematopoietic stem cell transplantation (HSCT). Slides may be downloaded and used without permission for one-time presentation or personal use. Bredeson C, Leger C, Couban S, Simpson D, Huebsch L, Walker I et al. One donor's unpreparedness for the severity of bone pain due to pre-donation injections led to considerable distress. However, upon close examination of donors’ responses, a number of motivations for donation were reported (Table 2). It is nothing compared with giving someone a life.’. The experience of donating bone marrow to a relative. J Pediatr Psychol 2003; 28: 223–231. Bill Young Cell Transplantation Program. Anyone else in the family is unlikely to match. Aslan O, Kav S, Meral C, Tekin F, Yesil H, Ozturk U et al. Google Scholar. The internet and transplant coordinator were also common information sources. She believed that she was expected to support multiple family members despite having undergone the donation procedure. Depression, anxiety and post-trauma symptoms have been identified in HCST patients.12, 13, 14 Family members and caregivers can also experience significant psychological distress.15 Sibling donors have the dual role of family member as well as a donor, which may render them psychologically vulnerable in a manner that is different from the patient and other family members/caregivers. In all, 17 (77%) donors rated their emotional support from sources other than the hospital, such as family, friends and external counsellors, as ‘very adequate’, whereas 13 (59%) described the emotional support provided by the hospital as ‘moderate’ or ‘very adequate’. Psychological adjustment of adult bone marrow transplant donors whose recipient survives. Blood. Cavallaro AM, Lilleby K, Majolino I, Storb R, Appelbaum FR, Rowley SD et al. This was exemplified in this study where three donors reported taking measures to maintain their own health to provide their siblings with the best chance of survival. volume 47, pages1361–1365(2012)Cite this article. Oncol Nurs Forum 2000; 27(4): 693–700. Switzer GE, Dew MA, Magistro CA, Goycoolea JM, Twillman RK, Alter C et al. A brother or sister is most likely to be a match. Frequency analyses and comparisons of continuous data were performed with SPSS/PASW Statistics 18.23 Qualitative data from interviews and questionnaires were analysed as one data set using the six-stage thematic approach proposed by Braun and Clarke.24 This involved: familiarisation with responses, generation of initial codes, collation of codes into potential themes, reviewing themes in relation to coded extracts and the entire data set, defining and naming themes and reporting on outcomes. Owing to the limited potential participant pool, pre-testing of the measure was not completed. Some donors experienced conflict with family members, worsening their experience; for other donors, family members provided support and validation of the beneficence of their act, which lessened negative emotional experiences. Copelan EA . Routine provision of psychosocial support to donors as well as recipients is therefore important. A total of 15 (68%) donors said that they did not hesitate in deciding to donate. A comparison of donors who did or did not participate was performed. N Eng J Med 2006; 354: 1813–1826. Therefore, despite 20 (91%) participants stating that they ‘did not feel pressured to donate’, a number of factors may have been considered by donors (for example, knowledge that the transplant was the only chance of survival for recipient) that applied implicit pressure in deciding to donate. In light of findings, preparation and care for donors may be improved by the following: Donors should be given the opportunity to discuss concerns about donation with a clinician (for example, senior nurse or doctor) not directly involved in treating the sibling recipient. I think (my father) tipped over the edge because my brother was suffering from leukaemia… so he took it out on me.’. For the 22 participants, pre-donation frequency of donor–recipient contact ranged from daily (9%), weekly (32%), monthly (41%), to yearly/less frequent (18%) contact. Psychooncology 2008; 17: 304–307. Cancer Nurs 2004; 27: 55–64. Qual Res Psychol 2006; 3: 77–101. I asked if smoking affects the blood stem cells that I would donate. I felt treated like a number.’. A bone marrow transplant is a blood and bone marrow stem cell transplant from a healthy donor to a recipient whose own bone marrow is affected by disease. When asked about the most challenging aspect of donation, emotional distress was reported by 15 (68%) donors, physical discomfort by nine (41%) and disruption to daily activities by one (5%). Zhang MJ, Davies SM, Camitta BM, et al. NVivo Qualitative Data Analysis Software Version 8. Negative emotional consequences of family dynamics, however, were also reported. Safety of bone marrow stem cell donation: a review. Donating stem cells or bone marrow to a relative. This perceived active participation translated into a sense of responsibility with associated guilt if their sibling continued to be unwell.30. More than half of HSCT donors did not choose to participate or could not be contacted. One donor expressed this conflict as follows: ‘He became very ill and that was a time of very high anxiety and uncertainty as to whether he would survive. The perceived objectivity of information from brochures meant that these were preferred by some. Information should include the risks and benefits of HSCT for the recipient; risks to the donor; the donation procedure; range and severity of possible physical and psychological adverse effects and available supports. PubMed  The two general categories for bone marrow transplants are: autologous, which is a transplant using a person’s own (previously harvested) stem cells; and. Following transplantation, a recipient's health status often fluctuates, which can cause ongoing donor stress.18 Recipient death has been shown to produce short-term-negative feelings following donation,19 with research indicating that donors for recipients who have not survived remain significantly more depressed than donors with living recipients 6 months after donation.20 Longer-term psychological gains have also been reported.19. Following donation, fluctuations in the recipient's health status were also a source of distress for donors. Biol Blood Marrow Transplant. The effects of bereavement on adult sibling bone marrow donors' psychological well-being and reactions to donation. Anderlini P, Korbling M, Dale D, Gratwohl A, Schmitz N, Stroncek D et al. χ2 tests of independence also found no significant differences in the proportion of living recipients (P=0.11), gender (P=0.38) or relationship to recipient (P=0.71). PASW Statistics Release 18.0.3. Results revealed that a broad range of both positive and negative emotions were experienced at different time points during donation. Three to six year follow-up of normal donors who received recombinant human granulocyte colony-stimulating factor. Bone Marrow Transplantation 2010; 45: 1269–1273. Bone Marrow Transplant 2000; 25: 85–89. A single item assessed thoughts and feelings about being a donor after donation. Donors also reported conflicting expectations and agendas of different family members. 2012; 119(17): 3908-3916. Impact of stem cell donation modality on normal donor quality of life: a prospective randomized study. How many interviews are enough? SPSS Inc: Chicago, 2010. 1): 25-30. (2020), Bone Marrow Transplantation Future research should utilise a prospective, longitudinal design to determine the experiences of donors before and following stem cell collection, as well as the factors that shaped this experience. Tissue Antigens. Mosher CE, Redd WH, Rini CM, Burkhalter JE, DuHamel KN . [7,8,9] Unrelated donor transplant outcomes are now comparable to related donor transplant outcomes in several patient populations. The conduct of this study was approved by The Alfred Hospital and Monash University human Research Ethics Committees. PBSC donors receive injections of granulocyte colony-stimulating factor to increase stem cell production and then undergo aphaeresis to collect the blood stem cells.4, 5 The main symptoms experienced by PBSC donors are muscle aches, fatigue and bone pain,6, 7 whereas BM donors experience more pain and fatigue post donation.8, 9, 10, 11, For donors, compared with the physical consequences of HSCT, the psychosocial impact has received far less attention and is the focus of this paper. The varied approaches to recruitment were made available following recognition that a number of participants lived several hours travel from the hospital or interstate, preventing completion of face-to-face interviews. Jessica, who is eight, is found to be a match, and Mandy and her family are overjoyed that she will be able to have the transplant. Wiener LS, Steffen-Smith E, Battles HB, Wayne A, Love CP, Fry T . Data saturation, the point in data collection when no new themes emerge,22 was apparent after 15 interviews. Bone Marrow Transplant 2001; 27: 917–923. Download Slide: Improved One-Year Survival, Unrelated Donor Transplants, Advances in treating post-transplant complications and more precise HLA matching have contributed to the improvements in survival. Thus, it is not known if the experiences of donors in this study are representative of the broader HSCT donor populations. Six participants completed face-to-face interviews, nine completed phone interviews and seven completed the questionnaire. Collection occurs either via BM harvest (BMT) under general anaesthesia3 or, now more commonly, PBSC collection. PubMed Central  Themes were identified in two ways using the constant comparison approach25 by (a) noting their frequencies across the data or (b) considering the extent to which each related to the research questions. This can be very frustrating for relatives who are keen to help. Bone Marrow Transplantation 2002; 29: 145–149. The 26-item questionnaire assessed the following domains: personal details; issues before, during and after donation and overall impressions of the donation process. Their decision was not described as conscious, but rather as ‘so natural’ that it did not require consideration. Psychooncology 1999; 8: 55–63. Donors reported that despite their emotional and physical distress, they had an easier role compared with their ill siblings and were giving them a chance for survival: ‘It is such a small period of being in pain and discomfort. You are using a browser version with limited support for CSS. Sibling stem cell donor experiences at a single institution.

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