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正式支持的局限与贡献:加拿大服务提供者对平衡为残疾人士及其家庭提供正式支持与自然支持的看法

The Limits and Contributions of Formal Support: Service Providers' Perspectives on Balancing Formal and Natural Support for People with Disabilities and their Families in Canada.

作者信息

Nuri Reshma Parvin, Piccone Caitlin, Gaurav Navjit, Thomson Donna, Pauls Rebecca, Perry Linda, Aldersey Heather Michelle

机构信息

School of Rehabilitation Therapy, Queen's University, Louise D. Acton Building, 31 George Street, Kingston, ON K7L 3N6 Canada.

Family Partner, Ottawa, ON Canada.

出版信息

J Dev Phys Disabil. 2025;37(1):129-156. doi: 10.1007/s10882-023-09944-2. Epub 2024 Jan 2.

Abstract

Evidence suggests that integrated support, combining both natural and formal supports, is often essential for individuals with developmental disabilities to achieve their preferred quality of life. However, studies are limited on how to organize supports so that people with developmental disabilities and their families find a balance between formal and natural supports. Often, there are systemic and personal boundaries around the nature and extent of support that can be offered to persons with developmental disabilities through formal mechanisms, yet the value of natural supports in the lives of persons with developmental disabilities is often undervalued in society. Therefore, the objectives of this study were to explore formal support providers' perspectives on (a) the unique skillsets and attributes of natural support providers and formal support providers; and (b) how we might best enable both natural and formal supports for persons with developmental disabilities and their families. Following a qualitative approach, we interviewed 16 formal support providers working with adults with developmental disabilities and their families via Zoom. We analyzed data using thematic analysis. We organized results into three themes: the role of natural supports, the role of formal supports, and strategies to best configure a system of supports. Results imply that there is a need for investment of funding to incentivize both support structures for adults with developmental disabilities and their families. Future studies should explore the perspectives from people with developmental disabilities and their natural support providers.

摘要

有证据表明,将自然支持和正式支持相结合的综合支持,对于发育障碍患者实现其理想的生活质量通常至关重要。然而,关于如何组织支持以便发育障碍患者及其家庭在正式支持和自然支持之间找到平衡的研究有限。通常,通过正式机制向发育障碍患者提供支持的性质和范围存在系统和个人层面的限制,然而自然支持在发育障碍患者生活中的价值在社会中往往被低估。因此,本研究的目的是探讨正式支持提供者对以下方面的看法:(a)自然支持提供者和正式支持提供者独特的技能组合和特质;(b)我们如何才能最好地为发育障碍患者及其家庭提供自然支持和正式支持。采用定性研究方法,我们通过Zoom采访了16名与发育障碍成年人及其家庭合作的正式支持提供者。我们使用主题分析法对数据进行了分析。我们将结果归纳为三个主题:自然支持的作用、正式支持的作用以及优化支持系统的策略。结果表明,需要投入资金来激励为发育障碍成年人及其家庭提供支持的两种结构。未来的研究应探讨发育障碍患者及其自然支持提供者的观点。

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