Bone Marrow Donation from the Perspective of Sibling Donors

Abstract

This study aimed to characterize the sociodemographic profile of sibling bone marrow donors and to describe how they perceive the donation. This was a descriptive, exploratory and longitudinal study. Participants were 20 related bone marrow donors, between 18 and 42 years of age (mean=30.5 years, sd=7.47). Interviews were held before and immediately after the donation. Sociodemographic data were subject to descriptive statistical analysis and qualitative data to categorical content analysis. In the interviews held before the donation, stressor events were the sibling's disease and treatment and the responsibility of being the donors. During the interviews after the donation, the following were mentioned: anxiety on the day before and on the day of the donation, pain the following day, and acknowledgement of the health team's support as a facilitator of the donation process. In view of the findings, it is important for the team to outline intervention strategies to meet to the donors' specific needs.Descriptors: Tissue Donors; Family; Bone Marrow Transplantation; Mental Health. 1 Paper extracted from Master's Thesis "Repercussões psicológicas da doação da medula óssea no doador relacionado", presented to Donación de médula ósea en la perspectiva de hermanos donadoresEste estudio objetivó caracterizar el perfil socio demográfico y describir la percepción, de hermanos donadores de médula ósea, acerca de la donación. Se trata de estudio descriptivo, exploratorio y con recorte longitudinal. Participaron 20 donadoresrelacionados de médula ósea, con edades entre 18 y 42 años (promedio=30,5 años, de=7,47). Fueron utilizadas entrevistas, aplicadas antes e inmediatamente después de la donación. Fue realizado un análisis estadístico descriptivo de los datos socio demográficos y análisis de contenido categorial de los datos cualitativos. En las entrevistas antes de la donación aparecieron como eventos causantes de estrés: el enfermarse, el tratamiento del hermano y la responsabilidad de ser los donadores. En el período posterior a la donación fue relatada ansiedad (en la víspera y en el día de la donación), dolor en el día siguiente, y reconocimiento del apoyo del equipo como elemento facilitador del proceso de donación. Frente a lo encontrado, se recomienda que el equipo planifique estrategias de intervención que permitan atender las necesidades específicas de los donadores.Descriptores: Donadores de Tejido; Família; Trasplante de Medula Ósea; Salud Mental. IntroductionBone Marrow Transplantation (BMT) is becoming an effective alternative treatment for potentially fatal illnesses (1) , the diagnoses of which generate psychological impact for the patient and their family unit (2) . Families who are confronted with this challenge are generally faced with the disruption of quotidian life, as it was prior to diagnosis. Coupled with this grief, the families are forced to face the destruction of the family myth that the fatal diseases only happen to others (3) .The diagnosis introduces a moment of crisis, to the extent that a n...

Adult‐related haematopoietic stem cell donor experiences and the provision of information and psychosocial support: A systematic literature review

“…At the time of study participation, seven BM recipients were alive and five had died. de Oliveira‐Cardoso, dos Santos, Mastropietro, and Voltarelli, () studied 20 Brazil BM donors pre‐donation and immediately post‐donation by asking about their perceptions regarding their relative’s illness, the transplant and donation, motivation and expectations related to the process. The Swedish study by Kisch et al () included a sample of 10 BM and peripheral blood stem cell (PBSC) donors.…”

Having a sibling as donor: Patients' experiences immediately before allogeneic hematopoietic stem cell transplantation

“…Negative experiences, such as anxiety, pain and guilt as well as positive experiences, such as happiness about being a match, an increased sense of self-worth and of pride and a closer rela-tionship with the sick sibling have been described. Siblings are often concerned about the outcome of the transplantation for the sick sibling and have a feeling of responsibility to do what is needed to be done to help a family member (Christopher, 2000;de Oliveira-Cardoso et al, 2010;Munzenberger et al, 1999;Pillay et al, 2012;Wiener et al, 2008). Quite a few investigations have been made into the situation of unrelated stem cell donors (Garcia et al, 2013;Sacchi et al, 2008;Switzer et al, 2014;Switzer et al, 1997).…”

“…However, there is a lack of knowledge about sibling stem cell donors' experiences of being asked to become a donor and of their other experiences before donating. To my knowledge only one qualitative study exploring adult sibling stem cell donors' experiences pre-donation has been carried out (de Oliveira-Cardoso et al, 2010), but was performed in bone-marrow donors only. The majority of qualitative studies about sibling donors' pre-donation experiences have been performed after the donation process, entailing uncertainty about what the donors actually remember about their pre-donation experiences (Wiener et al, 2008).…”

“…Siblings who are asked to donate stem cells are in a vulnerable situation, where they may experience emotional stress, pressure, and even coercion from relatives and health professionals (Christopher, 2000;de Oliveira-Cardoso et al, 2010;Horowitz & Confer, 2005;Pillay et al, 2012). The fact that even if the sibling donates there is no guarantee that the patient will survive may exert extra emotional pressure.…”

“…The fact that even if the sibling donates there is no guarantee that the patient will survive may exert extra emotional pressure. Potential sibling donors may experience being socially isolated, sometimes feeling afraid to donate (de Oliveira-Cardoso et al, 2010;van Walraven et al, 2012). They might be seen, by themselves but mainly by others, as just a source of stem cells.…”