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呼吁通过包容性研究,让非洲智障人士发出自己的声音。

A call to give a voice to people with intellectual disabilities in Africa through inclusive research.

作者信息

Kahonde Callista K

机构信息

Department of Global Health, Faculty of Medicine and Health Sciences, Stellenbosch University, Cape Town, South Africa.

出版信息

Afr J Disabil. 2023 Apr 25;12:1127. doi: 10.4102/ajod.v12i0.1127. eCollection 2023.

Abstract

Research looking into the day-to-day lives of people with intellectual disabilities (ID) is on the increase in Africa. However, not enough is being done to include people with ID as active contributors to this research through inclusive approaches. Inclusive research empowers people with ID as they have the agency and autonomy to speak for themselves and they are given an active voice in the research process and outcomes. This leads to services that cater for what matters to people with ID themselves as opposed to having their needs defined by other people. The common myths and misconceptions attached to ID in Africa, which increase stigma towards people affected by this type of disability can be abated by their visibility in research and evidence of their ability to express themselves. This article makes a call to researchers on the African continent to include people with ID in research as active contributors to the research and not simply as research subjects or respondents. A background is given of global developments that have occurred in inclusive research based on the literature and the author's personal experience, which African researchers can learn from while taking cognizance of the specific needs of their own contexts. This is followed by highlighting the gaps in Africa. The article ends with a discussion of possible reasons for a lack of inclusive research in Africa and suggestions and recommendations to address this gap.

摘要

在非洲,针对智障人士日常生活的研究正在增加。然而,通过包容性方法让智障人士作为这项研究的积极贡献者参与其中的工作做得还不够。包容性研究赋予智障人士权力,因为他们有能力为自己发声,并且在研究过程和结果中拥有积极的话语权。这会带来满足智障人士自身所关注事物的服务,而不是由他人来界定他们的需求。非洲地区对智障存在的常见误解和偏见,会增加对这类残疾患者的污名化,而他们在研究中的现身以及表达自身能力的证据,可以减少这种现象。本文呼吁非洲大陆的研究人员让智障人士作为研究的积极贡献者参与研究,而不仅仅是作为研究对象或受访者。基于文献和作者个人经验,介绍了包容性研究在全球的发展情况,非洲研究人员在了解自身具体情况的同时可以从中学习。接着强调了非洲存在的差距。文章最后讨论了非洲缺乏包容性研究的可能原因,并提出了解决这一差距的建议。

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