School of Psychology and Counselling, Queensland University of Technology, Victoria Park Road, Kelvin Grove, QLD, 4059, Australia.
The Cooperative Research Centre for Living with Autism (Autism CRC), Long Pocket, Brisbane, Queensland, Australia.
Int J Equity Health. 2020 Aug 6;19(1):134. doi: 10.1186/s12939-020-01247-8.
People with autism spectrum disorder (ASD) face many psychosocial challenges throughout life, highlighting the need for programs and resources promoting psychosocial wellbeing. Indigenous peoples with ASD and/or other neurodevelopmental disorders must overcome cultural and social barriers to access such supports. This study aimed to identify psychosocial programs and resources developed world-wide for this population by systematically reviewing research evaluating programs aiming to promote the psychosocial wellbeing of this population and/or their caregivers; and collating and reviewing resources developed to promote their psychosocial wellbeing.
Searches were last conducted in December 2019. The systematic review searched 28 electronic databases, and 25 electronic databases were searched for resources promoting psychosocial wellbeing. Additional published and unpublished studies were identified from relevant reviews, authors of eligible articles, and experts working in Indigenous Health. Articles and resources were screened for inclusion using pre-defined criteria. Articles included in the systematic review were assessed for quality using the Mixed Methods Assessment Tool. The diversity and paucity of outcomes reported precluded pooling of study findings for meta-analysis.
Seven articles situated in the USA (2), Canada (3) and Australia (2); and eleven resources developed in Australia (9), Canada (1) and New Zealand (1) met inclusion criteria. All articles showed some promising findings for improving psychosocial wellbeing for Indigenous children with ASD and/or another neurodevelopmental disorder, and 5 of 7 evaluated the cultural adaptation of an existing evidence-based program for an Indigenous population. However, methodological quality was moderate or low (57% and 43% of articles respectively) and no studies had adult participants. The psychosocial wellbeing supports provided by the 11 resources included psychoeducation, community support, and services/workshops.
Despite the paucity of research and resources found, important exemplars demonstrate that existing programs can be adapted to support Indigenous people with ASD and other neurodevelopmental disorders. While future policy should endeavour to facilitate Indigenous people's access to support services, and encourage researchers to develop and evaluate programs promoting psychosocial wellbeing for this population, given complexities of designing and evaluating new programs, careful and appropriate cultural adaptations of existing evidence-based programs would increase feasibility of ongoing research without compromising outcomes.
自闭症谱系障碍（ASD）患者在一生中面临许多心理社会挑战，这凸显了需要制定方案和提供资源以促进心理社会健康。患有 ASD 和/或其他神经发育障碍的土著人民必须克服文化和社会障碍才能获得此类支持。本研究旨在通过系统综述评估旨在促进这一人群心理社会健康及其照顾者心理社会健康的方案的研究，确定为这一人群制定的全世界心理社会方案和资源；并整理和审查为促进其心理社会健康而制定的资源。
最后一次搜索是在 2019 年 12 月进行的。系统综述在 28 个电子数据库中进行了搜索，在 25 个电子数据库中搜索了促进心理社会健康的资源。从相关综述、合格文章的作者以及从事土著健康工作的专家处确定了额外的已发表和未发表的研究。使用预先确定的标准对文章和资源进行筛选，以确定是否符合纳入标准。对系统综述中纳入的文章使用混合方法评估工具进行质量评估。由于报告的结果多样性和缺乏多样性，因此无法对研究结果进行汇总分析。
七篇文章分别位于美国（2 篇）、加拿大（3 篇）和澳大利亚（2 篇）；以及十一项资源分别在澳大利亚（9 项）、加拿大（1 项）和新西兰（1 项）开发，符合纳入标准。所有文章都显示出一些有希望的改善自闭症谱系障碍土著儿童和/或另一种神经发育障碍儿童心理社会健康的发现，并且 7 篇文章中有 5 篇评估了针对土著人群的现有循证方案的文化适应性。然而，方法学质量中等或较低（分别为 57%和 43%的文章），并且没有研究有成年参与者。11 项资源提供的心理社会健康支持包括心理教育、社区支持和服务/研讨会。
尽管研究和资源很少，但重要的范例表明，现有方案可以进行调整以支持患有 ASD 和其他神经发育障碍的土著人民。尽管未来的政策应该努力促进土著人民获得支持服务，并鼓励研究人员为这一人群开发和评估促进心理社会健康的方案，但鉴于新方案设计和评估的复杂性，对现有循证方案进行仔细和适当的文化调整将增加正在进行的研究的可行性，而不会影响结果。
