Cavadini Raphaël, Drain Elise, Bernaudin Françoise, D'Autume Clémence, Giannica Davide, Giraud François, Baubet Thierry, Taïeb Olivier
Child Psychiatry Department, 11th District, Hôpital Maison Blanche, Paris, France.
Department of Psychopathology, Avicenne Hospital, Paris XIII University & Assistance Publique-Hôpitaux de Paris, Bobigny, France.
Pediatr Transplant. 2019 May;23(3):e13376. doi: 10.1111/petr.13376. Epub 2019 Feb 20.
Genoidentical HSCT is currently the only curative treatment for SCA, preventing further vascular complications in high-risk children. Studies on the psychological implications of HSCT for recipient, sibling donor, and the rest of the family have been limited in SCA. This study enrolled ten families and used semi-structured interviews to explore the parents' experience at three time points: first before transplantation, then 3 months later, and 1 year later. Three themes emerged from the results: (a) the presence of anxiety, experienced throughout the process, and alleviated by coping strategies (positive thinking, family support, praying); (b) the ability to remain parents to recipient and other family members, despite apprehension and feelings of helplessness, reinforced by the mobilization of important resources at the individual/family levels; (c) the ability to acknowledge the opportunity for their child to be cured of the disease, despite feelings of guilt toward families without a donor, or their own families back home. Overall, the parental experience with HSCT is complex, involving intra-psychic, familial, cultural, religious, and existential factors. Thus, it is important for medical teams to be cognizant of these issues in order to provide the best support to families during the HSCT process.
基因相同的造血干细胞移植（HSCT）目前是镰状细胞贫血（SCA）唯一的治愈性治疗方法，可预防高危儿童出现进一步的血管并发症。在SCA中，关于HSCT对受者、同胞供者及其他家庭成员心理影响的研究一直有限。本研究招募了10个家庭，并采用半结构化访谈来探究父母在三个时间点的经历：首先是移植前，然后是3个月后，以及1年后。结果出现了三个主题：（a）焦虑情绪贯穿整个过程，并通过应对策略（积极思考、家庭支持、祈祷）得以缓解；（b）尽管心存担忧和无助感，但通过调动个人/家庭层面的重要资源，仍有能力继续作为受者及其他家庭成员的父母；（c）尽管对没有供者的家庭或自己家乡的家庭感到内疚，但仍能认识到孩子有机会治愈疾病。总体而言，父母在HSCT过程中的经历很复杂，涉及内心、家庭、文化、宗教和生存等因素。因此，医疗团队认识到这些问题很重要，以便在HSCT过程中为家庭提供最佳支持。
