Building an evidence-based multi-level system of quality disability support for adults with acquired neurological disability.

IF 2.1 4区 医学 Q1 REHABILITATION Disability and Rehabilitation Pub Date : 2024-12-01 Epub Date: 2024-02-19 DOI:10.1080/09638288.2024.2316780
Megan Topping, Jacinta Douglas, Di Winkler
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Abstract

Purpose: People with acquired neurological disability have the right to quality disability support, yet there is still limited user insights shaping disability services. This research aimed to develop a comprehensive understanding of quality support for adults with acquired neurological disability based on lived experiences.

Methods: Using a constructivist grounded theory approach, this project engaged 12 adults with acquired neurological disability, 12 support workers, and 10 close others in individual interviews. Each perspective was analysed independently and subsequently merged to construct a holistic model of quality support grounded in lived experience.

Results: The model of quality support encompasses interconnected themes spanning dyadic relationships, support worker competency, team dynamics, provider practices, and sector-wide considerations. Key elements include recognising the individual's expertise in their support needs, nurturing effective support relationships, fostering a capable support team, and upholding sector accountability. Authentic choice and personal agency emerged as paramount factors in achieving quality support.

Conclusions: The findings align with disability rights and individualised funding principles, emphasising the centrality of people with lived experience in shaping support services. The research underscores the need to prioritise authentic choice and individual empowerment, offering valuable insights for both practice and policy development in the disability support sector.

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为患有后天性神经残疾的成年人建立一个以证据为基础的多层次优质残疾支持系统。
目的:后天性神经残疾者有权获得高质量的残疾支持,然而用户对残疾服务的了解仍然有限。本研究旨在基于生活经验,全面了解为后天性神经残疾成人提供的优质支持:本项目采用建构主义基础理论方法,对 12 名后天神经残疾成人、12 名支持工作者和 10 名关系密切者进行了个别访谈。对每种观点都进行了独立分析,然后将其合并,构建出一个以生活经验为基础的优质支持整体模型:优质支持模式包含了相互关联的主题,涵盖了二人关系、支持工作者的能力、团队动力、提供者的实践以及整个行业的考虑因素。关键要素包括承认个人在其支持需求方面的专长、培养有效的支持关系、培养一支有能力的支持团队以及坚持部门问责制。真正的选择和个人能动性是实现优质支持的最重要因素:研究结果符合残疾人权利和个性化资助原则,强调了有生活经验的人在形成支持服务中的核心地位。这项研究强调了将真实选择和个人赋权放在首位的必要性,为残疾人支持部门的实践和政策制定提供了宝贵的见解。
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来源期刊
Disability and Rehabilitation
Disability and Rehabilitation 医学-康复医学
CiteScore
5.00
自引率
9.10%
发文量
415
审稿时长
3-6 weeks
期刊介绍: Disability and Rehabilitation along with Disability and Rehabilitation: Assistive Technology are international multidisciplinary journals which seek to encourage a better understanding of all aspects of disability and to promote rehabilitation science, practice and policy aspects of the rehabilitation process.
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