Praxis Care, Belfast, UK.
Queen's University Belfast, Belfast, UK.
Health Soc Care Community. 2020 Jul;28(4):1282-1291. doi: 10.1111/hsc.12961. Epub 2020 Feb 23.
This article presents the findings from a qualitative, participatory research project which explored how people with intellectual disabilities and/or mental health problems have, or have not been, supported to make their own decisions. The aim of the research is to help inform how supported decision-making, as required by Article 12 of the UN Convention on the Rights of Persons with Disabilities, can be effectively operationalised. The project provides an overview of experiences of support as well as identifying which supports are valued. It was conducted between July 2017 and July 2018 and was a partnership between disabled people, service providers and a University. It involved peer researchers interviewing 41 people with mental health problems and/or intellectual disabilities, in community settings, about their experiences and views of support. The key findings include that decision-making is a central aspect of people's lives. Participants discussed the positive role which decision-making can have but also how it felt when they were not supported to make their own decisions. Participants said that there were three main things that make decision-making harder: the type of decision; the role of other people; and what the outcome might be. Time was consistently identified as a very important factor. In terms of support, people said that they would like: practical support including more accessible information; emotional support including someone to talk to; and sometimes the options to choose from. There was very little mention of existing, more formal processes of support such as advance decisions or care planning. The peer researcher aspect of the project was valued by participants. The main implications of the research are for how support for decision-making should be provided including the need for an individualised approach as the support needed varies across decisions, time and people.
本文介绍了一项定性、参与式研究项目的结果，该项目探讨了智力残疾和/或精神健康问题患者如何获得或未获得支持以做出自己的决策。研究的目的是帮助了解如何有效实施联合国《残疾人权利公约》第 12 条要求的支持决策。该项目概述了支持的经验，并确定了哪些支持是有价值的。该项目于 2017 年 7 月至 2018 年 7 月进行，是由残疾人、服务提供者和一所大学组成的合作伙伴关系。它涉及同伴研究人员在社区环境中采访 41 名有精神健康问题和/或智力残疾的人，了解他们对支持的经验和看法。主要发现包括决策是人们生活的一个核心方面。参与者讨论了决策可以产生的积极作用，但也讨论了当他们没有得到支持来做出自己的决策时的感受。参与者表示，有三个主要因素使决策变得更加困难：决策的类型、其他人的角色以及可能的结果。时间一直被认为是一个非常重要的因素。在支持方面，人们表示他们希望：包括更易获取信息的实际支持；包括有人倾诉的情感支持；有时还希望有选择的机会。几乎没有人提到现有的、更正式的支持流程，如预先决定或护理计划。项目中的同伴研究人员方面受到了参与者的重视。研究的主要意义在于如何提供支持决策，包括需要采取个性化的方法，因为所需的支持因决策、时间和人员而异。
