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支持患有后天性脑损伤(ABI)的儿童和青少年及其兄弟姐妹:一个有 ABI 儿童的家庭夏令营的体验。

Supporting children and young people with an acquired brain injury (ABI) and their siblings: The experience of a camp for families with a child with an ABI.

机构信息

Monash-Epworth Rehabilitation Research Centre, Monash University, Melbourne, Australia.

Turner Institute for Brain and Mental Health, Brain Injury and Rehabilitation Theme, Monash University, Melbourne, Australia.

出版信息

Neuropsychol Rehabil. 2021 Jun;31(5):797-813. doi: 10.1080/09602011.2020.1731556. Epub 2020 Feb 26.

Abstract

Paediatric acquired brain injury (ABI) is associated with long-term negative sequelae, and families must continually adapt to meet the needs of the child with ABI and family members. Condition-specific camps may support families in this process. This study explored the experience of camps for children with ABI and their families from the perspective of children and young people with ABI and their siblings. Semi-structured interviews were conducted with 10 people with ABI ( = 23.93,  = 16.52 years) and 19 siblings of people with ABI ( = 14.53,  = 5.73 years). Using reflexive thematic analysis, the central theme identified was "My safe space," supported by three further themes: "Having fun and relaxing," "Making friends," and "Enjoying choices." Camp was a space where the shared understanding and acceptance of ABI created a sense of safety. This was facilitated by enjoying activities, developing friendships with peers who shared the experience of ABI, and having a sense of control through choice availability. Thus, camps appear to offer opportunities to enjoy typical childhood experiences while restoring a sense of security, increasing understanding of ABI and validating attendees' experiences. Camps may, therefore, offer low-cost interventions to support children with ABI and their families.

摘要

儿童获得性脑损伤(ABI)与长期的负面后遗症有关,家庭必须不断适应,以满足 ABI 儿童及其家庭成员的需求。特定于病情的营地可能会在这个过程中为家庭提供支持。本研究从患有 ABI 的儿童和青少年及其兄弟姐妹的角度探讨了儿童 ABI 营地的体验。对 10 名患有 ABI 的人( = 23.93, = 16.52 岁)和 19 名患有 ABI 的人的兄弟姐妹( = 14.53, = 5.73 岁)进行了半结构化访谈。使用反思性主题分析,确定的中心主题是“我的安全空间”,由三个进一步的主题支持:“娱乐和放松”、“结交朋友”和“享受选择”。营地是一个共享对 ABI 的理解和接受感的空间,这营造了一种安全感。这是通过享受活动、与患有 ABI 的同龄人发展友谊以及通过提供选择来获得控制感来实现的。因此,营地似乎为享受典型的童年体验提供了机会,同时恢复了安全感,增加了对 ABI 的理解,并验证了与会者的体验。因此,营地可能为支持患有 ABI 的儿童及其家庭提供低成本的干预措施。

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