Department of Psychology, University of Oslo, Norway; Department of Psychiatry, University of Oxford, United Kingdom.
Department of Psychology, University of Oslo, Norway; Frambu resource centre for rare disorders, Norway.
J Pediatr Nurs. 2024 May-Jun;76:91-98. doi: 10.1016/j.pedn.2024.01.032. Epub 2024 Feb 16.
The study explored challenges experienced by siblings of children with chronic disorders, as expressed by siblings in parent-child dialogues.
Seventy-three parent-child dialogues (M duration = 28.6 min) were analyzed using qualitative thematic analysis. The dialogues took place within the SIBS group intervention for siblings and parents of children with chronic disorders. The siblings (aged 8 to 14 years) had brothers and sisters with autism spectrum disorders, ADHD, rare disorders, cerebral palsy, or severe mental health disorders. The data are from session 5 in the SIBS intervention, in which the siblings are to express their wishes about family-related challenges (e.g., desired changes) to their parents. The parents are encouraged to listen, explore, and validate the child's perspective before discussing solutions.
Most of the family-oriented challenges the siblings expressed were related to the diagnosis of the brother or sister with a disorder. Four main themes were identified: (1) Family life (e.g., limitations in family activities); (2) The diagnosis (e.g., concerns about the future); (3) Violence; and (4) Important relationships.
The siblings experienced challenges and difficult emotions in interactional processes in which the diagnosis affected family life and relationships. The study adds a new dimension to the field by identifying siblings' expressed challenges based on parent-child dialogues.
Identified themes can guide how parents should meet and address siblings' needs, how health care providers inform and support parents in doing so, and emphasize the relevance of interventions targeting family-level risk and resilience factors.
本研究通过亲子对话中兄弟姐妹的表达，探讨了患有慢性疾病儿童的兄弟姐妹所经历的挑战。
采用定性主题分析方法对 73 个亲子对话（M 时长=28.6 分钟）进行了分析。这些对话是在针对患有慢性疾病儿童的兄弟姐妹及其父母的 SIBS 团体干预中进行的。这些兄弟姐妹（年龄在 8 至 14 岁之间）的兄弟姐妹患有自闭症谱系障碍、ADHD、罕见疾病、脑瘫或严重精神健康障碍。这些数据来自 SIBS 干预的第 5 次会议，在会议中，兄弟姐妹向父母表达他们对与家庭相关的挑战（例如，期望的改变）的愿望。鼓励父母在讨论解决方案之前倾听、探索和验证孩子的观点。
兄弟姐妹表达的大多数以家庭为导向的挑战都与患病兄弟姐妹的诊断有关。确定了四个主要主题：（1）家庭生活（例如，家庭活动的限制）；（2）诊断（例如，对未来的担忧）；（3）暴力；（4）重要关系。
兄弟姐妹在受诊断影响家庭生活和关系的互动过程中经历了挑战和困难情绪。该研究通过基于亲子对话确定兄弟姐妹表达的挑战，为该领域增添了一个新的维度。
确定的主题可以指导父母如何满足和满足兄弟姐妹的需求，卫生保健提供者如何告知和支持父母这样做，并强调针对家庭层面风险和适应力因素的干预措施的相关性。
