Wiener Lori S, Steffen-Smith Emilie, Battles Haven B, Wayne Alan, Love Cynthia P, Fry Terry
Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, MD, USA.
Psychooncology. 2008 Mar;17(3):304-7. doi: 10.1002/pon.1222.
Allogeneic bone marrow (BM) and cytokine mobilized peripheral blood stem cell (PBSC) transplantation can be curative for patients with malignant and nonmalignant hematologic diseases. Siblings are most often selected as a donor match; however, research on sibling donors is limited and has focused primarily on conventional BM donors. This exploratory study describes the experiences of PBSC sibling donors at a single institution. Through retrospective interviews, 14 sibling donors shared their perceived needs and concerns before and after their stem cell collection. Donors identified fears about the donation procedure, and expressed the need for more information about transplant outcome and complications. The inclusion of the sibling donors themselves, rather than the report of their parents or health-care providers and the qualitative nature of the structured design allowed sibling donors to describe their concerns and thoughts without being restrained by the beliefs of the participant's parents, researcher or sibling's medical team. Suggestions for visual educational tools, psychosocial interventions and future research are provided.
异基因骨髓(BM)和细胞因子动员的外周血干细胞(PBSC)移植对患有恶性和非恶性血液系统疾病的患者可能具有治愈作用。兄弟姐妹通常是首选的供体匹配对象;然而,关于同胞供体的研究有限,且主要集中在传统的骨髓供体上。这项探索性研究描述了一家机构中PBSC同胞供体的经历。通过回顾性访谈,14名同胞供体分享了他们在干细胞采集前后所感知到的需求和担忧。供体们指出了对捐赠程序的恐惧,并表示需要更多关于移植结果和并发症的信息。纳入同胞供体自身,而非其父母或医疗保健提供者的报告,以及结构化设计的定性性质,使得同胞供体能够描述他们的担忧和想法,而不受参与者父母、研究人员或同胞医疗团队信念的限制。本文还提供了关于视觉教育工具、心理社会干预措施及未来研究的建议。