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

IF 1.5 4区 医学 Q2 EDUCATION, SPECIAL Journal of Developmental and Physical Disabilities Pub Date : 2024-01-02 DOI:10.1007/s10882-023-09944-2
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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.

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正规支持的局限与贡献:服务提供者关于平衡对加拿大残疾人及其家庭的正式和自然支持的观点
摘要 有证据表明,综合支持(将自然支持和正规支持结合在一起)对于发育障碍人士达到他们所期望的生活质量往往是至关重要的。然而,关于如何组织支持以帮助发育障碍人士及其家人在正规支持和自然支持之间找到平衡的研究却很有限。通常情况下,通过正规机制为发育障碍人士提供的支持在性质和程度上都存在系统和个人界限,但自然支持在发育障碍人士生活中的价值往往被社会低估。因此,本研究的目标是探讨正规支持提供者对以下问题的看法:(a)自然支持提供者和正规支持提供者的独特技能组合和属性;以及(b)我们如何才能最好地为发育障碍人士及其家庭提供自然和正规支持。我们采用定性方法,通过 Zoom 访问了 16 位为发育障碍成人及其家庭服务的正规支持者。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、正规支持的作用以及支持系统的最佳配置策略。研究结果表明,有必要投入资金来激励发育障碍成人及其家庭的支持结构。未来的研究应探讨发育障碍人士及其自然支持提供者的观点。
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来源期刊
CiteScore
3.40
自引率
5.60%
发文量
54
期刊介绍: The Journal of Developmental and Physical Disabilities is an interdisciplinary forum for the publication of original research and clinical reports from a variety of fields serving persons with developmental and physical disabilities. Submissions from researchers, clinicians, and related professionals in the fields of psychology, rehabilitation, special education, kinesiology, counseling, social work, psychiatry, nursing, and rehabilitation medicine are considered. Investigations utilizing group comparisons as well as single-case experimental designs are of primary interest. In addition, case studies that are of particular clinical relevance or that describe innovative evaluation and intervention techniques are welcome. All research and clinical reports should contain sufficient procedural detail so that readers can clearly understand what was done, how it was done, and why the strategy was selected. Rigorously conducted replication studies utilizing group and single-case designs are welcome irrespective of results obtained. In addition, systematic reviews, meta-analyses, and theoretical discussions that contribute substantially to understanding the problems and strengths of persons with developmental and physical disabilities are considered for publication. Authors are encouraged to preregister empirical studies, replications, systematic reviews, and meta-analyses in a relevant public database and to include such information with their submission to the journal. Authors are also encouraged, where possible and applicable, to deposit data that support the findings of their research in a public repository (see detailed “Research Data Policy” module in the journal’s Instructions for Authors). In response to the need for increased clinical and research endeavors with persons with developmental and physical disabilities, the journal is cross-categorical and unbiased methodologically.
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