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非一般的成年生活:智障成年人视角下的生活条件。

No ordinary adult life: Living conditions from the perspective of adults with intellectual disabilities.

机构信息

Department of Public Health and Caring Sciences, Disability and Habilitation, Uppsala University, Sweden.

Department of Public Health and Caring Sciences, Health Equity and Working Life/HEAL, Uppsala University, Sweden.

出版信息

J Intellect Disabil. 2023 Dec;27(4):944-963. doi: 10.1177/17446295221107284. Epub 2022 Jun 11.

Abstract

This study focuses on the subjective experience of the living conditions of adults with intellectual disabilities as related to the Uppsala Quality of Life model (UQoL2). Eleven semi-structured interviews were conducted to study issues raised by people with intellectual disabilities. Study participants had their own home, either in an ordinary dwelling or group home. The findings show that the dependence on support in daily life infringes on the sense of adult social status and control of life. Staff and family had a mandate to define Quality of Life, which countered the possibilities of a life based on the preferences of those with intellectual disabilities. Knowledge about factors that affect living conditions, one of the social determinants of health, has implications for public health in general and the development of society's efforts for people who are in lifelong dependence on support and service from others.

摘要

本研究以乌普萨拉生活质量模型(UQoL2)为基础,关注成年智障人士生活条件的主观体验。采用 11 次半结构化访谈对智障人士提出的问题进行研究。研究参与者有自己的家,或在普通住所,或在集体住所。研究结果表明,日常生活中对支持的依赖侵犯了成年社会地位感和对生活的控制感。工作人员和家属有权对生活质量进行定义,这与智障人士基于个人喜好的生活方式相悖。了解影响生活条件的因素(健康的社会决定因素之一)对一般公共卫生和社会为终身依赖他人支持和服务的人所做努力的发展具有重要意义。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/c10d/10647887/da1483576173/10.1177_17446295221107284-fig1.jpg

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