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Development of a decision guide to support the elderly in decision making about location of care: an iterative, user-centered design.
Research Involvement and Engagement Pub Date : 2016-07-19 , DOI: 10.1186/s40900-016-0040-0
Mirjam M Garvelink 1 , Julie Emond 2 , Matthew Menear 1 , Nathalie Brière 2 , Adriana Freitas 1 , Laura Boland 3 , Maria Margarita Becerra Perez 1 , Louisa Blair 1 , Dawn Stacey 3, 4 , France Légaré 1, 5
Affiliation  

PLAIN ENGLISH SUMMARY For the elderly to get the care and services they need, they may need to make the difficult decision about staying in their home or moving to another home. Many other people may be involved in their care too (friends, family and healthcare providers), and can support them in making the decision. We asked informal caregivers of elderly people to help us develop a decision guide to support them and their loved ones in making this decision. This guide will be used by health providers in home care who are trained to help people make decisions. The guide is in French and English. To design and test this decision guide we involved elderly people, their caregivers and health administrators. We first asked them what they needed for making the decision, and then designed a first version of the guide. Then we asked them to look at it and give feedback, which was used to make the final version. We then used scientific criteria to check its content and the language used. The final decision guide was acceptable to the caregivers, their elderly loved ones, and the health administrators. The guide is currently being evaluated in a large research project with home care teams in the province of Quebec. ABSTRACT Background As they grow older, many elderly people are faced with the difficult and preference-sensitive decision about staying in their home or moving to a residence better adapted to their evolving care needs. We aimed to develop an English and French decision aid (DA) for elderly people facing this decision, and to involve end-users in all phases of the development process. Methods A three-cycle design with involvement of end-users in Quebec. End-users were elderly people (n = 4) caregivers of the elderly (n = 5), health administrators involved in home-care service delivery or policy (n = 6) and an interprofessional research team (n = 19). Cycle 1: Decisional needs assessment and development of the first prototype based on existing tools and input from end-users; overview of reviews examining the impact of location of care on elderly people's health outcomes. Cycle 2: Usability testing with end-users, adaptation of prototype. Cycle 3: Refinement of the prototype with a linguist, graphic designer and end-users. The final prototype underwent readability testing and an International Patient Decision Aids (IPDAS) criteria compatibility assessment to verify minimal requirements for decision aids and was tested for usability by the elderly. ResultsCycle 1: We used the Ottawa Personal Decision Guide to design a first prototype. As the overview of reviews did not find definitive evidence regarding optimal locations of care for elderly people, we were not able to add evidence-based advantages and disadvantages to the guide. Cycle 2: Overall, the caregivers and health administrators who evaluated the prototype (n = 10) were positive. In response to their suggestions, we deleted some elements (overview of pros, cons, and consequences of the options) that were necessary to qualify the tool as a DA and renamed it a "decision guide". Cycle 3: We developed French and English versions of the guide, readable at a primary school level. The elderly judged the guide as acceptable. Conclusion We developed a decision guide to support elderly people and their caregivers in decision making about location of care. This paper is one of few to report on a fully collaborative approach to decision guide development that involves end-users at every stage (caregivers and health administrators early on, the frail elderly in the final stages). The guide is currently being evaluated in a cluster randomized trial. Trial registration: NCT02244359.

中文翻译:

制定决策指南以支持老年人做出有关护理地点的决策:以用户为中心的迭代设计。

普通英语摘要为了使老年人获得他们所需的照料和服务,他们可能需要做出艰难的决定,即留在家中或搬到另一个家。许多其他人(朋友,家人和医疗保健提供者)也可能参与他们的护理,并可以支持他们做出决定。我们要求老年人的非正式照料者帮助我们制定决策指南,以支持他们和他们的亲人做出这一决定。本指南将由受过训练以帮助人们做出决策的家庭护理保健提供者使用。该指南以法语和英语提供。为了设计和测试此决策指南,我们让老年人,他们的照料者和卫生管理人员参与进来。我们首先询问他们做出决定所需的条件,然后设计了该指南的第一版。然后,我们要求他们查看并提供反馈,该反馈用于制作最终版本。然后,我们使用科学标准来检查其内容和使用的语言。最终的决定指南对看护者,其年长的亲人和卫生管理人员是可接受的。目前,该指南正在魁北克省的一个大型研究项目中与家庭护理团队一起进行评估。摘要背景随着年龄的增长,许多老年人面临着艰难而又偏爱偏好的决定,即要留在家中或搬到更适合其不断变化的护理需求的住所。我们旨在为面临这一决定的老年人开发英语和法语决策帮助(DA),并使最终用户参与开发过程的所有阶段。方法在魁北克进行最终用户参与的三周期设计。最终用户为老年人(n = 4),老年人(n = 5)的照顾者,参与家庭护理服务提供或政策的卫生管理人员(n = 6)以及跨专业研究团队(n = 19)。周期1:基于现有工具和最终用户的输入,决策需求评估和第一个原型的开发;审查的概述,审查了护理地点对老年人健康结果的影响。周期2:与最终用户进行可用性测试,改编原型。周期3:与语言学家,图形设计师和最终用户一起完善原型。最后的原型经过可读性测试和国际患者决策辅助工具(IPDAS)标准兼容性评估,以验证对决策辅助工具的最低要求,并经过老年人的可用性测试。结果周期1:我们使用《渥太华个人决策指南》设计了第一个原型。由于评论概述未找到有关老年人最佳护理位置的确切证据,因此我们无法在指南中添加基于证据的优缺点。周期2:总体而言,评估原型(n = 10)的看护者和健康管理者是积极的。根据他们的建议,我们删除了一些必要的要素(优点的优缺点和选择的后果),以使该工具具有DA资格,并将其重命名为“决策指南”。周期3:我们开发了法语和英语版本的指南,可在小学阶段阅读。老人认为该指南可以接受。结论我们制定了一项决策指南,以支持老年人及其照顾者进行有关医疗地点的决策。本文是报告决策制定的完全协作方法的少数报告之一,决策方法的制定涉及每个阶段的最终用户(早期的护理人员和卫生管理人员,最后阶段的年老体弱者)。该指南目前正在整群随机试验中进行评估。试用注册:NCT02244359。本文是报告采用完全协作方法进行决策指南开发的少数​​报告之一,该决策指南的制定涉及每个阶段的最终用户(早期的护理人员和健康管理人员,最后阶段的年老体弱者)。该指南目前正在整群随机试验中进行评估。试用注册:NCT02244359。本文是报告决策制定的完全协作方法的少数报告之一,决策方法的制定涉及每个阶段的最终用户(早期的护理人员和卫生管理人员,最后阶段的年老体弱者)。该指南目前正在整群随机试验中进行评估。试用注册:NCT02244359。
更新日期:2019-11-01
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