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促进有发育障碍的青年成人纳入社区为基础的健康研究的策略。

Strategies to Promote the Inclusion of Young Adults With Developmental Disabilities in Community-Based Health Studies.

机构信息

1 York University, Toronto, Ontario, Canada.

出版信息

Qual Health Res. 2019 Jun;29(7):958-971. doi: 10.1177/1049732318808249. Epub 2018 Nov 18.

Abstract

We discuss strategies to promote the inclusion of people with developmental disabilities (DDs) in qualitative community-based research studies. Strategies were applied in three projects conducted between 2012 and 2017 that addressed issues of socioeconomic challenges, discrimination, and exclusion of children and young adults with developmental disabilities (YADD). Strategies included partnership with community organizations; inclusion of YADD, family caregivers (FCs), and service providers in advisory committees (ACs); and strategies to accommodate YADD. As part of our contribution, we discuss issues of invisibility and exclusion of individuals with DDs who have "low" functioning capacities. There is a need to review studies sampling inclusion criteria as they may constitute a barrier for participation. Preference for sampling "high" functioning individuals may reinforce exclusion in research, and replicate broader patterns of socioeconomic exclusion of individuals with disabilities. Our discussion of inclusive research is informed by critical disability studies and the underlying principle "nothing about us without us."

摘要

我们讨论了促进将发育障碍(DD)人士纳入基于社区的定性研究的策略。这些策略适用于 2012 年至 2017 年期间开展的三个项目,这些项目涉及儿童和青少年发育障碍(YADD)面临的社会经济挑战、歧视和排斥问题。策略包括与社区组织建立伙伴关系;在咨询委员会(AC)中纳入 YADD、家庭照顾者(FCs)和服务提供者;以及为适应 YADD 而采取的策略。作为我们贡献的一部分,我们讨论了功能低下的发育障碍人士被忽视和排斥的问题。需要审查纳入标准的研究,因为它们可能构成参与的障碍。优先选择功能较高的个体进行抽样可能会在研究中加剧排斥现象,并复制残疾人士在社会经济方面受到更广泛排斥的模式。我们对包容性研究的讨论受到了批判性残疾研究和基本原则“没有我们,就没有我们”的启发。

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