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本文引用的文献

1
'It's a 24/7 Deal': Parents of adults with intellectual and developmental disabilities discuss natural supports.“这是一项全天候的事务”:成年智力和发育障碍者的父母探讨自然支持。
J Appl Res Intellect Disabil. 2023 Nov;36(6):1264-1275. doi: 10.1111/jar.13145. Epub 2023 Jul 29.
2
"Let the people you're supporting be how you learn": a grounded theory study on quality support from the perspective of disability support workers.“让你支持的人成为你学习的榜样”:从残疾支持工作者的角度出发,对优质支持进行的扎根理论研究。
Disabil Rehabil. 2023 Dec;45(25):4259-4271. doi: 10.1080/09638288.2022.2148300. Epub 2022 Nov 22.
3
A Socio-Ecological Approach to Understanding the Perinatal Care Experiences of People with Intellectual and/or Developmental Disabilities in Ontario, Canada.采用社会生态学方法理解加拿大安大略省具有智力和/或发育障碍人士的围产期护理体验。
Womens Health Issues. 2021 Nov-Dec;31(6):550-559. doi: 10.1016/j.whi.2021.08.002. Epub 2021 Sep 21.
4
Perceptions of people with mild intellectual disability and their family members about family-based social capital in the Netherlands.荷兰轻度智力残疾人士及其家庭成员对基于家庭的社会资本的看法。
Health Soc Care Community. 2022 Jan;30(1):341-352. doi: 10.1111/hsc.13407. Epub 2021 May 12.
5
Supports for people with intellectual and developmental disabilities during the COVID-19 pandemic from their own perspective.智障和发展障碍人士在 COVID-19 大流行期间的自身视角下的支持。
Res Dev Disabil. 2021 Jan;108:103813. doi: 10.1016/j.ridd.2020.103813. Epub 2020 Nov 9.
6
Rewards and challenges of parenting a child with Down syndrome: a qualitative study of fathers' perceptions.养育唐氏综合征患儿的奖励与挑战:父亲认知的定性研究。
Disabil Rehabil. 2021 Dec;43(24):3562-3573. doi: 10.1080/09638288.2020.1745907. Epub 2020 Apr 7.
7
Family support and family and child-related outcomes among families impacted by disability in low- and middle-income countries: A scoping review.中低收入国家残疾家庭的家庭支持和家庭及儿童相关结果:范围综述。
J Child Health Care. 2020 Dec;24(4):637-654. doi: 10.1177/1367493519883456. Epub 2019 Oct 24.
8
Mental health challenges and resilience among mothers with intellectual and developmental disabilities.智力和发育障碍母亲的心理健康挑战和适应力。
Disabil Health J. 2019 Oct;12(4):602-607. doi: 10.1016/j.dhjo.2019.06.006. Epub 2019 Jun 15.
9
Humanization of Care: Key Elements Identified by Patients, Caregivers, and Healthcare Providers. A Systematic Review.关怀的人性化:患者、照护者和医疗保健提供者确定的关键要素。系统评价。
Patient. 2019 Oct;12(5):461-474. doi: 10.1007/s40271-019-00370-1.
10
Getting by with a little help from my friends: siblings report on the amount of informal support received by adults with disabilities.在朋友的一点帮助下勉强过活:兄弟姐妹报告成年残疾人士收到的非正式支持的数量。
J Intellect Disabil Res. 2019 Sep;63(9):1097-1110. doi: 10.1111/jir.12622. Epub 2019 Apr 29.

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.

DOI:10.1007/s10882-023-09944-2
PMID:39867962
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11759287/
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。