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首页> 外文OA文献 >“I love my sister, but sometimes I don't”: A qualitative study into the experiences of siblings of a child with profound intellectual and multiple disabilities
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“I love my sister, but sometimes I don't”: A qualitative study into the experiences of siblings of a child with profound intellectual and multiple disabilities

机译：“我爱我的妹妹，但有时我不爱”：对具有深厚智力和多重残疾的孩子的兄弟姐妹的经历进行的定性研究

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Background Many previous family quality of life studies have relied on parental information for understanding if and how having a sibling with profound intellectual and multiple disabilities (PIMD) influences the sibling’s quality of life. In the current study, children had the opportunity to describe both positive and negative aspects of having a sibling with PIMD. Method Photo elicitation interviews were conducted with 18 children (6–13 years old) and thematically analysed using the following domains: joint activities, mutual understanding, private time, acceptance, forbearance, trust in wellbeing, exchanging experiences, social support, and dealing with the outside world. Results Overall, the children described both positive and negative experiences, indicating that having a sibling with PIMD influenced their quality of life in multiple ways. Most mentioned were experiences classified in the joint activities domain. Conclusion Having a sibling with PIMD influences the life of the interviewed children both positively and negatively. Both the opportunity for shared activities with the sibling with PIMD and moments of private time are important for sibling quality of life
机译：背景技术以前的许多家庭生活质量研究都依靠父母的信息来理解具有深智和多重残疾（PIMD）的同胞是否以及如何影响同胞的生活质量。在当前的研究中，孩子们有机会描述与PIMD同胞的积极和消极方面。方法对18名儿童（6-13岁）进行照片启发访谈，并使用以下领域进行主题分析：共同活动，相互了解，私人时间，接纳，忍耐，对健康的信任，经验交流，社会支持以及与他人打交道外界。结果总体上，孩子们描述了积极和消极的经历，表明与PIMD的同胞会以多种方式影响他们的生活质量。提到最多的是在联合活动领域中分类的经验。结论与PIMD的同胞关系对受访儿童的生活产生积极和消极的影响。与PIMD的同胞共享活动的机会以及私人时间对于同胞的生活质量都至关重要

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