PDF(Pubmed)
Abstract：
BACKGROUND: There is a need to better understand autism across the life course, including the lives of both autistic people and supporting relatives. As part of a larger mixed methods cohort study involving autistic adults, carers and relatives this sub-study focused on the experiences of relatives alone to learn more about the lives of people from the wider personal networks. Our research questions were: 1. What are the experiences of family members who care for and/or support autistic adults, 2. How can the viewpoints of relatives add to what we know about transitions and challenges experienced by autistic adults, and 3. What strategies/support have been helpful for adults and relatives?
METHODS: Relatives of autistic adults were purposively sampled and recruited using the Relatives/Carers cohort from the Adult Autism Spectrum Cohort-UK. 18 participants aged 31-81years who were related to 16 autistic adults aged 18-57years were interviewed for 24-91minutes. Interview transcripts were examined using reflexive thematic analysis.
RESULTS: Two overarching themes were developed, \'Family support goes a long way in caring for autistic adults\' and \'When families turn to society for support\' with subthemes. Relatives described benefits they had gained and their admiration for autistic adults. They reflected on how they gave support for independence in various contexts of dependence. They also identified the challenges that both autistic adults and families face navigating support systems (for example for healthcare and employment). An important novel outcome was the advocated value of role-models with lived experience who come from outside of the family.
CONCLUSIONS: The findings lead to recommendations for: (i) Strategies to reduce the barriers for support that are faced by autistic individuals and relatives during crisis points; (ii) recognition and support for what enables both relatives and autistic adults to function independently (e.g. funded activities, flexible employment); (iii) future planning conversations to include relatives who can enhance knowledge and help plan for future care or support needs for autistic adults and (iv) opportunities for role models (persons with lived experience, autistic adults and relatives) to inspire others and disseminate knowledge.
CONCLUSIONS: These findings add valuable insights into the experiences of relatives of autistic adults and challenge the reader to have greater appreciation of the many roles relatives can contribute across time and in a variety of contexts. These perspectives add important information for those working with and planning provision for autistic adults.
METHODS: Relatives of autistic adults were purposively sampled and recruited using the Relatives/Carers cohort from the Adult Autism Spectrum Cohort-UK. 18 participants aged 31-81years who were related to 16 autistic adults aged 18-57years were interviewed for 24-91minutes. Interview transcripts were examined using reflexive thematic analysis.
RESULTS: Two overarching themes were developed, \'Family support goes a long way in caring for autistic adults\' and \'When families turn to society for support\' with subthemes. Relatives described benefits they had gained and their admiration for autistic adults. They reflected on how they gave support for independence in various contexts of dependence. They also identified the challenges that both autistic adults and families face navigating support systems (for example for healthcare and employment). An important novel outcome was the advocated value of role-models with lived experience who come from outside of the family.
CONCLUSIONS: The findings lead to recommendations for: (i) Strategies to reduce the barriers for support that are faced by autistic individuals and relatives during crisis points; (ii) recognition and support for what enables both relatives and autistic adults to function independently (e.g. funded activities, flexible employment); (iii) future planning conversations to include relatives who can enhance knowledge and help plan for future care or support needs for autistic adults and (iv) opportunities for role models (persons with lived experience, autistic adults and relatives) to inspire others and disseminate knowledge.
CONCLUSIONS: These findings add valuable insights into the experiences of relatives of autistic adults and challenge the reader to have greater appreciation of the many roles relatives can contribute across time and in a variety of contexts. These perspectives add important information for those working with and planning provision for autistic adults.
摘要：
背景：需要更好地了解整个生命过程中的自闭症，包括自闭症患者和赡养亲属的生活。作为一项涉及自闭症成年人的大型混合方法队列研究的一部分，照顾者和亲戚这项子研究只关注亲戚的经历，以便从更广泛的个人网络中了解更多关于人们生活的信息。我们的研究问题是：1.照顾和/或支持自闭症成年人的家庭成员的经历是什么，2.亲戚的观点如何增加我们对自闭症成年人经历的转变和挑战的了解，and3.哪些策略/支持对成人和亲属有帮助？
方法：使用来自英国成人自闭症谱系队列的亲属/照顾者队列，对自闭症成人的亲属进行了有目的地抽样和招募。与16名年龄在18-57岁的自闭症成年人相关的18名年龄在31-81岁的参与者接受了24-91分钟的采访。使用反身性主题分析对访谈笔录进行了检查。
结果：制定了两个总体主题，“家庭支持在照顾自闭症成年人方面大有帮助”和“当家庭转向社会寻求支持时”带有子主题。亲戚描述了他们获得的好处以及对自闭症成年人的钦佩。他们反思了他们如何在各种依赖背景下支持独立。他们还确定了自闭症成年人和家庭在导航支持系统（例如医疗保健和就业）方面面临的挑战。一个重要的新颖成果是倡导来自家庭以外的具有生活经验的榜样的价值。
结论：研究结果提出了以下建议：（i）减少自闭症个人和亲属在危机时刻面临的支持障碍的策略；（ii）承认和支持使亲属和自闭症成年人能够独立运作的因素（例如资助活动，灵活就业）；（iii）未来规划对话，包括能够增进知识并帮助计划自闭症成年人未来护理或支持需求的亲戚，以及（iv）榜样的机会（有生活经验的人，自闭症的成年人和亲戚)来激励他人并传播知识。
结论：这些发现为自闭症成年人亲属的经历增加了宝贵的见解，并挑战读者对亲属可以在不同时间和不同背景下做出贡献的许多角色有更大的理解。这些观点为与自闭症成年人一起工作和计划提供的人增加了重要信息。
方法：使用来自英国成人自闭症谱系队列的亲属/照顾者队列，对自闭症成人的亲属进行了有目的地抽样和招募。与16名年龄在18-57岁的自闭症成年人相关的18名年龄在31-81岁的参与者接受了24-91分钟的采访。使用反身性主题分析对访谈笔录进行了检查。
结果：制定了两个总体主题，“家庭支持在照顾自闭症成年人方面大有帮助”和“当家庭转向社会寻求支持时”带有子主题。亲戚描述了他们获得的好处以及对自闭症成年人的钦佩。他们反思了他们如何在各种依赖背景下支持独立。他们还确定了自闭症成年人和家庭在导航支持系统（例如医疗保健和就业）方面面临的挑战。一个重要的新颖成果是倡导来自家庭以外的具有生活经验的榜样的价值。
结论：研究结果提出了以下建议：（i）减少自闭症个人和亲属在危机时刻面临的支持障碍的策略；（ii）承认和支持使亲属和自闭症成年人能够独立运作的因素（例如资助活动，灵活就业）；（iii）未来规划对话，包括能够增进知识并帮助计划自闭症成年人未来护理或支持需求的亲戚，以及（iv）榜样的机会（有生活经验的人，自闭症的成年人和亲戚)来激励他人并传播知识。
结论：这些发现为自闭症成年人亲属的经历增加了宝贵的见解，并挑战读者对亲属可以在不同时间和不同背景下做出贡献的许多角色有更大的理解。这些观点为与自闭症成年人一起工作和计划提供的人增加了重要信息。
