■以前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性低的限制,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罗阿(NZ)自闭症研究的第一个社区主导的优先事项。
■自闭症患者是该项目的重要合作伙伴,从开始和设计到方法和产出。我们收集了自闭症和自闭症社区(包括家庭,从业者,和研究人员)通过焦点小组(n=55)和在线调查(n=450)。几乎40%的受访者表示他们患有自闭症。
■焦点小组和调查的发现强调了集中自闭症患者经验和需求的研究的重要性,特别是自闭症新西兰人,包括针对毛利人和太平洋人民的文化特定研究。自闭症成年人的所有五个优先主题也是至少一个其他组的优先主题:(1)健康,心理健康,和自闭症患者(所有群体)的福祉;(2)终生服务(自闭症成年人,卫生保健/残疾,和教育从业者);(3)新西兰奥特罗阿自闭症患者的需求(自闭症成年人,whhānau);(4)具有各种支持需求的自闭症患者(自闭症成年人;教育从业者)的观点;(5)新西兰奥特罗阿自闭症患者的生活质量(自闭症成年人;医疗保健/残疾从业者)。
■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。
为什么这是一个重要的问题?以前没有自闭症和自闭症社区确定的Aotearoa新西兰自闭症研究重点。新西兰(NZ)的人口特征和社会文化背景是独一无二的。这项研究的目的是什么?我们想找出自闭症和自闭症社区认为未来自闭症研究应该关注的重点。研究人员做了什么?自闭症患者是这个项目的重要合作伙伴,并为设计做出了贡献,方法,和输出。我们对自闭症患者和更广泛的自闭症社区成员(家庭,从业者,和研究人员)在新西兰。在焦点小组中,我们询问了55人,他们认为新西兰未来的自闭症研究应该关注什么。三名研究人员(一名自闭症患者和两名非自闭症患者)分析了焦点组数据。他们阅读焦点小组的书面成绩单。然后,他们多次会面,谈论他们认为的想法是什么,并就最终的想法(主题)达成一致。在在线调查中,我们要求450人评价不同的自闭症研究主题对他们的重要性。为了分析调查数据,两位研究人员研究了每个自闭症研究课题对不同社区群体的重要性,包括自闭症成年人,家庭,从业者,和研究人员。研究结果如何?结果显示,社区认为未来的自闭症研究应该关注自闭症患者的经历,特别是自闭症新西兰人。社区成员还认为,有针对新西兰的自闭症研究很重要,包括针对毛利人和太平洋人民的文化特定研究。自闭症成年人被评为最重要的五个主题也是自闭症社区中至少一个其他人群的优先事项(例如,从业者)。健康,心理健康,自闭症患者的幸福是所有群体的优先主题。这些发现对我们已经知道的事情有什么补充?这些发现告诉我们自闭症成年人认为什么对新西兰未来的自闭症研究很重要。研究结果还向我们展示了自闭症成年人认为对未来自闭症研究重要的东西之间的异同,以及更广泛的自闭症社区中的其他人认为什么很重要。这项研究的潜在弱点是什么?焦点小组和在线调查可能并不适合所有愿意参加的人。所以我们可能错过了一些人的意见。这些发现将如何帮助现在或将来的自闭症成年人?我们已经确定了对自闭症患者和更广泛的自闭症社区对未来自闭症研究的重要意义。我们可以利用这些信息为新西兰未来的自闭症研究提供信息。资助机构可以使用这些信息来告知他们有关自闭症研究资助的决定。我们希望我们将自闭症成年人纳入这个项目的方式也能启发新西兰的其他自闭症研究,这将使自闭症研究更合适,相关,和道德。
UNASSIGNED: 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).
UNASSIGNED: 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.
UNASSIGNED: 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).
UNASSIGNED: We discuss the advantages of autistic involvement in research, and how these community priorities can inform future research and policy in NZ.
Why is this an important issue? There are no previous autism research priorities for Aotearoa New Zealand that have been determined by the autistic and autism communities. The population characteristics and social and cultural context of Aotearoa New Zealand (NZ) are unique. What was the purpose of this study? We wanted to find out what the autistic and autism communities think future autism research should focus on. What did the researchers do? Autistic people were essential partners in this project and contributed to the design, methods, and outputs. We carried out focus groups and an online survey of autistic people and members of the broader autism community (family, practitioners, and researchers) in NZ. In the focus groups, we asked 55 people what they thought future autism research in NZ should focus on. Three researchers (one autistic and two non-autistic) analyzed the focus group data. They read the written transcripts of the focus groups. Then, they met multiple times to talk about what they thought the ideas were and agree on the final ideas (themes). In the online survey, we asked 450 people to rate how important different autism research topics were to them. To analyze the survey data, two researchers looked at how important each autism research topic was for different community groups, including autistic adults, family, practitioners, and researchers. What were the results of the study? The results showed that the community thought future autism research should focus on the experiences of autistic people, particularly of autistic New Zealanders. Community members also thought that it was important that there is autism research that is specific to NZ, including culturally specific research for Māori and Pacific peoples. The five topics rated as most important by autistic adults were also priorities for at least one other group of people from the autism community (e.g., practitioners). Health, mental health, and well-being of autistic people was a priority topic for all groups. What do these findings add to what was already known? These findings tell us what autistic adults think is important for future autism research in NZ to focus on. The findings also show us the similarities and differences between what autistic adults think is important for future autism research, and what other people in the broader autism community think is important. What are the potential weaknesses in the study? The focus groups and online survey may not have been accessible to everyone who would like to take part. So we may have missed the opinion of some people. How will these findings help autistic adults now or in the future? We have determined what is important to autistic people and the broader autism community for future autism research. We can use this information to inform future autism research in NZ. Funding bodies can use this information to inform their decisions about funding for autism research. We hope that the way we included autistic adults in this project will also inspire other autism research in NZ, which will make autism research more appropriate, relevant, and ethical.