背景:社会护理环境中的支持人员表示需要资源来促进智障人士的临终关怀计划。这项研究旨在共同设计临终护理计划方法和资源的初步工具包,可在智障人士的成人社会护理服务中实施。
方法:采用了适应的基于经验的共同设计过程,以开发针对智障人士的临终关怀计划工具包。一个共同设计小组(“AllTogetherGroup”)于2023年1月至10月举行了六次会议。该小组由九名智障人士(包括四名智障人士,他还共同主持了研讨会),五个家庭成员,五名智力残疾支持人员,两名智力残疾服务经理,5名医疗保健专业人员。
结果:AllTogetherGroup测试了智障人士临终关怀计划的资源和方法,基于范围审查和焦点小组研究的结果。易于阅读的临终护理计划表格被认为是压倒性和复杂的,而视觉和创造性的方法受到欢迎。开发了三个新的视觉资源来支持智障人士的疾病规划和葬礼计划:(i)“当我生病时”思维卡;(ii)“让我们谈论葬礼”对话启动图片;(iii)“我的葬礼”计划卡。这三个资源,除了三个积极评价的现有资源,包括在一个新的工具包中,用于为智障人士进行临终关怀计划。
结论:通过迭代,灵活,包容性,和全面的共同设计过程,创建了一个由三个新开发的资源和三个现有资源组成的工具包,以促进支持人员对智障人士进行临终关怀计划。在与支持人员进行试用之后,最终的工具包是在网上免费提供的。
■研究小组包括四名智障研究人员(A.C.,D.J.,L.J.,和R.K.-B)。智力残疾的研究人员一直是研究过程的每一步的一部分;从研究设计到数据收集和分析,再到研究结果的传播。智力残疾服务提供者代表(M.W.,N.P.,和S.S.)也是联合设计小组的一部分。其中两名代表也是整个项目的共同申请人(N.P.和S.S.)。共同设计小组包括智障人士,家庭,智力残疾支持人员以及健康和社会护理专业人员。该研究得到了由各种利益相关者组成的研究咨询小组的支持,包括智障家庭的人,智力残疾研究人员,来自智障组织的代表,和政策制定者。
BACKGROUND: Support staff within social care settings have expressed a need for resources to facilitate end-of-life care planning with people with intellectual disabilities. This study aimed to co-design a preliminary toolkit of end-of-life care planning approaches and resources that can be implemented in adult social care services for people with intellectual disabilities.
METHODS: An adapted Experience-Based Co-Design process was applied to develop a toolkit for end-of-life care planning with people with intellectual disabilities. A co-design group (the \'All Together Group\') met six times from January to October 2023. The group comprised nine people with intellectual disabilities (including four researchers with intellectual disabilities, who also co-facilitated the workshops), five family members, five intellectual disability support staff, two intellectual disability service managers, and five healthcare professionals.
RESULTS: The All Together Group tested resources for and approaches to end-of-life care planning with people with intellectual disabilities, based on findings from a scoping review and a focus group study. Easy-read end-of-life care planning forms were deemed overwhelming and complicated, whilst visual and creative approaches were welcomed. Three new visual resources to support illness planning and funeral planning with people with intellectual disabilities were developed: (i) \'When I\'m ill\' thinking cards; (ii) \'Let\'s Talk About Funerals\' conversation-starter pictures; and (iii) \'My funeral\' planning cards. These three resources, alongside three positively evaluated existing resources, were included in a new toolkit for end-of-life care planning with people with intellectual disabilities.
CONCLUSIONS: Through an iterative, flexible, inclusive, and comprehensive co-design process, a toolkit of three newly developed and three existing resources was created to facilitate support staff in doing end-of-life care planning with people with intellectual disabilities. Following a trialling process with support staff, the final toolkit was made freely available online.
UNASSIGNED: The research team included four researchers with intellectual disabilities (A.C., D.J., L.J., and R.K.-B). Researchers with intellectual disability have been part of every step of the research process; from study design to data collection and analysis to dissemination of study findings.Intellectual disability service provider representatives (M.W., N.P., and S.S.) were part of the co-design group as well. Two of these representatives were also co-applicants in the overall project (N.P. and S.S.). The co-design group included people with intellectual disabilities, families, intellectual disability support staff and health and social care professionals. The study was supported by a Research Advisory Group comprising a variety of stakeholders, including people with intellectual disabilities families, intellectual disability researchers, representatives from intellectual disability organisations, and policymakers.