Caring for someone with dementia can be physically and emotionally difficult. Acting as a caregiver can make it difficult to access sources of support, particularly in the later stages of dementia. This paper reports the development and presents the targets (subject areas) and components of a prototype website to support family caregivers of a person with dementia towards the end of life. Adopting an iterative approach and co-production methods the development process consisted of four stages: Stage1-Synthesis of data: three sources of data (interviews, systematic review and theory) were synthesised using tabulation, to identify the targets of the prototype; Stage2-Identifying intervention targets and components: a research development group (health practitioners, a family caregiver and academic experts) met to discuss the development, using a modified nominal group process, refining the synthesis from stage 1; Stage3-Developing the intervention prototype: an outline of the prototype was developed based on stage 1 and 2; and Stage4–User testing: interviews with caregivers testing the prototype website. Qualitative interviews with caregivers identified four targets for the intervention: 1) feeling prepared and equipped; 2) feeling connected and supported; 3) valuing themselves as a caregiver and as an individual; 4) maintaining control of the caring situation and being the coordinator of care. The systematic review provided evidence on how and what components could address these targets, including providing information, peer support, contact with professionals, and psychological support. Theory helped to narrow the focus within each of these targets. Active discussion with the research development group and end users provided an outline of the prototype website. The prototype website presented addresses these targets with written information, videos from other caregivers, and peer and professional support sections. The subject areas covered included expectations at the end of life, support with day-to-day caring, care planning, and communication. This paper provides a detailed account of the development process of a prototype website for caregiver support. The transparent methodology and key lessons learnt from developing the prototype should help those who are developing similar interventions, across complex, progressive conditions and not just limited to dementia.

中文翻译：

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设计和开发共同制作的理论和基于证据的在线支持，为痴呆症患者临终时的家庭护理人员提供支持

照顾痴呆症患者在身体和情感上都可能很困难。作为看护者可能会很难获得支持来源，尤其是在痴呆症的后期。本文报告了开发情况，并介绍了原型网站的目标（主题领域）和组成部分，以支持痴呆症患者临终时的家庭护理人员。采用迭代方法和联合生产方法，开发过程分为四个阶段： 第一阶段-数据综合：使用表格综合三种数据来源（访谈、系统评价和理论），以确定原型的目标；第二阶段-确定干预目标和组成部分：研究开发小组（健康从业者、家庭护理人员和学术专家）开会讨论开发，使用修改后的名义小组流程，完善第一阶段的综合；第三阶段-开发干预原型：在第一阶段和第二阶段的基础上制定了原型的轮廓；第四阶段——用户测试：与测试原型网站的护理人员进行访谈。对护理人员的定性访谈确定了干预的四个目标：1）感觉已做好准备和装备；2）感受到联系和支持；3) 重视自己作为照顾者和个人的价值；4) 保持对护理情况的控制并担任护理的协调员。系统评价提供了关于如何以及哪些组成部分可以实现这些目标的证据，包括提供信息、同伴支持、与专业人员的联系以及心理支持。理论有助于缩小每个目标的焦点。与研究开发小组和最终用户的积极讨论提供了原型网站的轮廓。所展示的原型网站通过书面信息、其他护理人员的视频以及同行和专业支持部分来解决这些目标。涵盖的主题领域包括临终时的期望、日常护理支持、护理计划和沟通。本文详细介绍了护理人员支持原型网站的开发过程。透明的方法和从开发原型中吸取的关键经验教训应该有助于那些正在开发类似干预措施的人，这些干预措施适用于复杂、渐进的条件，而不仅仅是限于痴呆症。