Perceptions of People With Intellectual Disabilities on Autonomy and Decision-Making in Daily Life: A Systematic Review and Synthesis of Qualitative Studies.

IF 2 2区医学 Q1 EDUCATION, SPECIAL

Journal of Intellectual Disability Research Pub Date : 2025-09-11 DOI:10.1111/jir.70035

James Sheerin, Fionnuala Larkin, Samantha Dockray

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引用次数: 0

Abstract

Background: This qualitative systematic review aimed to synthesise research on the experiences of people with an intellectual disability on autonomy and decision-making in their everyday lives.

Method: A systematic review was completed of studies published between 2012 and 2024 that included qualitative data exploring perceptions of people with an intellectual disability aged 18 and over on autonomy and decision-making in their lives, excluding quantitative studies and those only including carers. Searches (conducted April-August 2022, updated June 2024) were based on terms linked to intellectual disability, autonomy and decision-making. Databases included PsycINFO, PsycARTICLES, PubMed, Social Sciences Full Text, SocINDEX, CINAHL, MEDLINE and Scopus. The review protocol was registered on Prospero ID: CRD42022333120.

Results: A total of 15 studies, including 246 people with an intellectual disability, met the inclusion criteria. Quality was assessed using the Critical Appraisal Skills Programme criteria. Thematic synthesis generated four primary analytical themes: 'We know what's best for you', 'The loudest voice gets heard', 'The meaning of autonomy' and 'Conflicting views on service role'.

Conclusion: The findings of this synthesis suggest that people with an intellectual disability often feel that their autonomy is not prioritised and that decisions are often made for them without their input. The findings highlight the need for person-centred approaches and systemic change to support the autonomy of people with an intellectual disability. Included studies often neglected to consider the researcher-participant relationship and used varied data collection and analytic methods, which produced heterogeneity in the review findings. Future research is needed to explore the impact of societal attitudes and beliefs on the autonomy of people with an intellectual disability, as well as the effectiveness of person-centred approaches in promoting autonomy.

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智障人士对日常生活中自主性与决策的认知：质性研究的系统回顾与综合。

背景：本定性系统综述旨在综合研究智障人士在日常生活中的自主和决策经验。方法：对2012年至2024年间发表的研究进行系统回顾，其中包括探讨18岁及以上智障人士对生活中自主性和决策的看法的定性数据，不包括定量研究和仅包括护理人员的研究。搜索（进行于2022年4月至8月，更新于2024年6月）基于与智力残疾、自主和决策相关的术语。数据库包括PsycINFO、PsycARTICLES、PubMed、Social Sciences Full Text、SocINDEX、CINAHL、MEDLINE和Scopus。审查协议已在Prospero上注册，ID: CRD42022333120。结果：共有15项研究，包括246名智障患者，符合纳入标准。使用关键评估技能计划标准评估质量。主题综合产生了四个主要的分析主题：“我们知道什么最适合你”、“最响亮的声音会被听到”、“自治的意义”和“对服务角色的冲突观点”。结论：这一综合研究的结果表明，智障人士经常觉得他们的自主权没有被优先考虑，决策往往是在没有他们参与的情况下为他们做出的。研究结果强调需要采取以人为本的方法和系统性变革，以支持智障人士的自主性。纳入的研究往往忽略了研究者与参与者之间的关系，并使用了不同的数据收集和分析方法，这导致了综述结果的异质性。未来的研究需要探索社会态度和信仰对智障人士自主性的影响，以及以人为本的方法在促进自主方面的有效性。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Journal of Intellectual Disability Research Multiple-

CiteScore

5.60

自引率

5.60%

发文量

期刊介绍： The Journal of Intellectual Disability Research is devoted exclusively to the scientific study of intellectual disability and publishes papers reporting original observations in this field. The subject matter is broad and includes, but is not restricted to, findings from biological, educational, genetic, medical, psychiatric, psychological and sociological studies, and ethical, philosophical, and legal contributions that increase knowledge on the treatment and prevention of intellectual disability and of associated impairments and disabilities, and/or inform public policy and practice. Expert reviews on themes in which recent research has produced notable advances will be included. Such reviews will normally be by invitation.