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制定基于证据的实践框架,以指导因获得性脑损伤或智力残疾导致认知障碍的人的决策支持。

Development of an evidence-based practice framework to guide decision making support for people with cognitive impairment due to acquired brain injury or intellectual disability.

机构信息

Living with Disability Research Centre, La Trobe University, Melbourne, Australia.

Summer Foundation, Melbourne, Australia.

出版信息

Disabil Rehabil. 2020 Feb;42(3):434-441. doi: 10.1080/09638288.2018.1498546. Epub 2018 Nov 18.

Abstract

At least 5% of people in Australia and the USA have cognitive impairment and require support for decision-making. This paper details a research program whereby an evidence-based Support for Decision Making Practice Framework has been developed for those who support people with cognitive disabilities to make their own decisions across life domains. The La Trobe framework was derived from a research program modeled on the Medical Research Council four-phase approach to development and evaluation of complex interventions. We completed phase one (development) by: (1) systematically reviewing peer-reviewed literature; and (2) undertaking qualitative exploration of the experience of support for decision-making from the perspectives of people with cognitive disabilities and their supporters through seven grounded theory studies. Results of phase two (feasibility and piloting) involving direct support workers and health professionals supported phase three (evaluation) and four (implementation), currently underway. The framework outlines the steps, principles, and strategies involved in support for decision-making. It focuses on understanding the will and preferences of people with cognitive disabilities and guides those who provide support including families, support workers, guardians, and health professionals. This framework applies across diverse contemporary contexts and is the first evidence-based guide to support for decision-making.Implications for RehabilitationSupport for decision-making is essential to maximise the participation of people with cognitive disability in decisions about their lives.Research has shown that support for decision making is a complex multifaceted process comprising multiple overlapping steps, delivered through individually tailored strategies and informed by practice principles.The La Trobe practice framework provides an evidence-based guide for engaging in effective support for decision-making with people with cognitive disability.

摘要

至少有 5%的澳大利亚人和美国人存在认知障碍,需要支持他们做出决策。本文详细介绍了一个研究计划,该计划开发了一个基于证据的支持决策制定实践框架,以帮助支持那些认知障碍人士在生活各领域做出自己的决策。拉筹伯框架源自一个研究计划,该计划模仿了医学研究委员会(MRC)针对复杂干预措施的四阶段开发和评估方法。我们通过以下步骤完成了第一阶段(开发):(1)系统地审查同行评议文献;(2)通过七项扎根理论研究,从认知障碍人士及其支持者的角度,对支持决策制定的经验进行定性探索。涉及直接支持工作者和卫生专业人员的第二阶段(可行性和试点)和第三阶段(评估)和第四阶段(实施)的结果目前正在进行中。该框架概述了支持决策制定所涉及的步骤、原则和策略。它侧重于了解认知障碍人士的意愿和偏好,并指导提供支持的人员,包括家属、支持工作者、监护人以及卫生专业人员。该框架适用于各种当代背景,是首个支持决策制定的基于证据的指南。

康复意义

支持决策制定对于最大限度地提高认知障碍人士在其生活决策中的参与至关重要。

研究表明,支持决策制定是一个复杂的多方面过程,包括多个重叠的步骤,通过个性化的策略实施,并以实践原则为指导。

拉筹伯实践框架为与认知障碍人士进行有效的决策支持提供了一个基于证据的指南。

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