Autism community priorities in diverse low-resource settings: A country-wide scoping exercise in India.
Autism community priorities in diverse low-resource settings: A country-wide scoping exercise in India.
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DOI：
10.1177/13623613231154067
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发表时间：
2024-01
期刊：
影响因子：
5.2
通讯作者：
Chakrabarti, Bhismadev
中科院分区：
文献类型：
--
作者：
Dey, Ipsita;Chakrabarty, Sreerupa;Nandi, Rajanya;Shekhar, Rakshita;Singhi, Sakhi;Nayar, Shoba;Ram, Jai Ranjan;Mukerji, Shaneel;Chakrabarti, Bhismadev
虽然一些高收入国家已经开展了绘制自闭症群体优先事项的研究，但在南半球国家却很少或根本没有这样的系统评估。据估计，仅印度就有超过 500 万自闭症患者。为了弥补文献中的这一空白，本研究对印度自闭症社区进行了调查，了解他们在三个领域的优先事项：技能培训、干预和研究。临床诊断为自闭症谱系障碍的个体以及自闭症个体的父母/监护人被邀请参加该研究。在线收集了 280 名受访者的数据，并对通过分层随机选择选出的子集 (n = 40) 进行了采访。结果强调，自助技能被一致列为技能培训中最重要的领域，因为它被认为是获得所有其他技能的基础。言语和语言治疗被认为是自闭症患者最重要的干预措施。在研究中，确定社区支持自闭症患者的最有效方法被视为重中之重。研究人员、临床医生和政策制定者可以利用这些见解来开发服务并塑造更符合社区需求的未来研究。为了开发更好的服务并推动研究议程，直接与自闭症社区接触至关重要。尽管高收入国家的一些研究已经勾勒出了自闭症群体的优先事项，但南半球国家却严重缺乏此类努力。据估计，仅在印度就有 500 万自闭症患者，而且几乎没有人努力确定他们的优先事项。此外，高收入国家的研究主要侧重于研究重点，而不是技能培训和干预措施。考虑到这些需求，我们进行了一项在线调查，随后与来自印度各地的自闭症儿童和自闭症成人的家长进行了深入对话。我们发现，受访者表示自助技能对于培训来说是最重要的，因为他们认为自助技能是生活各个其他方面的基础。言语和语言治疗被认为是该群体的最高干预重点，凸显了社交沟通的重要性。心理健康咨询也被认为是一个高度优先事项，但一些家长认为这对他们自己而不是对他们的孩子更相关。在研究中，首要任务是了解社区如何更好地支持自闭症患者。我们希望这些发现将帮助研究人员、政策制定者和服务提供商能够做出明智的决策、开发相关服务并塑造未来的研究。
While studies to map the priorities of the autistic community have been undertaken in some high-income countries, there has been little or no such systematic assessment in the global south. India alone is home to an estimated >5 million autistic individuals. To address this gap in the literature, this study conducted a survey of the Indian autism community on their priorities for three areas: skills training, intervention and research. Individuals with a clinical diagnosis of autism spectrum disorders and parents/guardians of autistic individuals were invited to take part in the study. Data from 280 respondents were collected online and followed up with interviews on a subset (n = 40) chosen through stratified random selection. Results highlighted a unanimous prioritisation for self-help skills as the most important area in skills training, as it was considered the foundation for acquiring all other skills. Speech and language therapy was identified as the most important intervention for autistic individuals. Within research, identifying the most effective ways for the community to support autistic people was given the topmost priority. Researchers, clinicians and policymakers may use these insights to develop services and shape future research that is more in accord with the community’s needs. It is vital to directly engage with the autism community in order to develop better services and drive the research agenda. While some studies in high-income countries have mapped the priorities of the autism community, there is a severe dearth of such efforts in the global south. Five million autistic individuals are estimated to live in India alone, and there has been little effort to map their priorities. Moreover, studies in high-income countries focused largely on research priorities, and not so much on skills training and interventions. Keeping these needs in mind, we conducted an online survey followed by an in-depth conversation with parents of autistic children and autistic adults drawn from across India. We found that the respondents reported self-help skills to be the most important for training, as they considered it fundamental for every other aspect of life. Speech and language therapy was considered to be the highest intervention priority for this group, highlighting the importance of social communication. Mental health counselling was also considered to be a high priority, but several parents identified it as being more relevant for themselves rather than for their children. Within research, the topmost priority was to understand ways in which the community can better support autistic people. We hope that these findings will help researchers, policymakers and service providers to be able to make well-informed decisions, develop relevant services and shape future research.
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DOI：
10.15585/mmwr.ss7010a1
发表时间：
2021-12-03
期刊：
Morbidity and mortality weekly report. Surveillance summaries (Washington, D.C. : 2002)
影响因子：
--
作者：
Shaw KA;Maenner MJ;Bakian AV;Bilder DA;Durkin MS;Furnier SM;Hughes MM;Patrick M;Pierce K;Salinas A;Shenouda J;Vehorn A;Warren Z;Zahorodny W;Constantino JN;DiRienzo M;Esler A;Fitzgerald RT;Grzybowski A;Hudson A;Spivey MH;Ali A;Andrews JG;Baroud T;Gutierrez J;Hallas L;Hall-Lande J;Hewitt A;Lee LC;Lopez M;Mancilla KC;McArthur D;Pettygrove S;Poynter JN;Schwenk YD;Washington A;Williams S;Cogswell ME
通讯作者：
Cogswell ME
DOI：
10.1016/s2214-109x(18)30309-7
发表时间：
2018-10
期刊：
The Lancet. Global health
影响因子：
--
作者：
Global Research on Developmental Disabilities Collaborators
通讯作者：
Global Research on Developmental Disabilities Collaborators
DOI：
10.1177/1362361314529627
发表时间：
2014-10
期刊：
Autism : the international journal of research and practice
影响因子：
--
作者：
Pellicano E;Dinsmore A;Charman T
通讯作者：
Charman T
影响因子：
5.2
作者：
Fletcher-Watson, Sue;Apicella, Fabio;Yirmiya, Nurit
通讯作者：
Yirmiya, Nurit
影响因子：
3.9
作者：
den Houting, Jacquiline;Pellicano, Elizabeth
通讯作者：
Pellicano, Elizabeth