Autistic Co-Led Community Priorities for Future Autism Research in Aotearoa New Zealand.

IF 9.5 Q1 PSYCHOLOGY, DEVELOPMENTAL
Autism in Adulthood Pub Date : 2024-06-17 eCollection Date: 2024-06-01 DOI:10.1089/aut.2022.0109
Lisa Marie Emerson, Ruth Monk, Larah van der Meer, Dean Sutherland, Laurie McLay
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Abstract

Background: Previous studies of community priorities for autism research have been limited by low representation of autistic people and thus a bias toward the views of families and professionals. We aimed to determine the first community-led priorities for autism research in Aotearoa New Zealand (NZ).

Methods: Autistic people were essential partners in the project, from inception and design through to methods and outputs. We gathered the views of the autistic and autism communities (including family, practitioners, and researchers) through focus groups (n = 55) and an online survey (n = 450). Almost 40% of the survey respondents indicated that they were autistic.

Results: The findings across the focus groups and survey highlighted the importance of research that centralizes the experiences and needs of autistic people, particularly of autistic New Zealanders, including culturally specific research for Māori and Pacific peoples. All five priority topics for autistic adults were also priorities for at least one other group: (1) Health, mental health, and well-being of autistic people (all groups); (2) Services across the life span (autistic adults, health care/disability, and education practitioners); (3) Needs of autistic people in Aotearoa NZ (autistic adults, whānau); (4) Perspectives from autistic people with a diverse range of support needs (autistic adults; education practitioners); (5) Quality of life of autistic people in Aotearoa NZ (autistic adults; health care/disability practitioners).

Conclusions: We discuss the advantages of autistic involvement in research, and how these community priorities can inform future research and policy in NZ.

新西兰奥特亚自闭症联合领导的社区未来自闭症研究的优先事项
背景:以往关于自闭症研究的社区优先事项的研究受到自闭症患者代表人数较少的限制,因此偏向于家庭和专业人士的观点。我们旨在确定新西兰奥特亚罗瓦(NZ)首个由社区主导的自闭症研究优先事项:方法:自闭症患者是项目的重要合作伙伴,从项目的启动、设计到方法和成果都是如此。我们通过焦点小组(55 人)和在线调查(450 人)收集了自闭症和自闭症群体(包括家庭、从业人员和研究人员)的意见。近 40% 的调查对象表示自己是自闭症患者:焦点小组和调查的结果都强调了集中研究自闭症患者,尤其是新西兰自闭症患者的经历和需求的重要性,包括针对毛利人和太平洋岛屿族裔的文化研究。自闭症成人的所有五个优先主题也是至少一个其他群体的优先主题:(1) 自闭症患者的健康、心理健康和福祉(所有群体);(2) 终生服务(自闭症成人、医疗保健/残疾和教育从业人员);(3) 新西兰奥特亚罗瓦自闭症患者的需求(自闭症成人、毛利人);(4) 有各种支持需求的自闭症患者的观点(自闭症成人、教育从业人员);(5) 新西兰奥特亚罗瓦自闭症患者的生活质量(自闭症成人、医疗保健/残疾从业人员)。结论:我们讨论了自闭症患者参与研究的优势,以及这些社区优先事项如何为新西兰未来的研究和政策提供信息。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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CiteScore
10.00
自引率
14.70%
发文量
47
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