Development of a decision guide to support the elderly in decision making about location of care: An iterative, user-centered design

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. Results Cycle 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.