A Home-Based Care Research Agenda by and for Homebound Older Adults and Caregivers

Homebound older adults have not had a voice in establishing a research agenda relevant to their needs and perspectives. We engaged homebound older adults receiving home-based primary care and caregivers to serve as stakeholder advisors to develop a patient- and caregiver-centered research agenda for home-based care. Over 9 months, we facilitated eight tablet-enabled videoconference meetings. We oriented advisors to patient-centered outcome research and research question development. Advisors developed and prioritized a list of 14 research domains and 127 associated research questions. The top three prioritized research domains in descending rank order (number of associated research questions) were out-of-pocket costs of caregiving (10), access to home-based care and related policy issues (19), and relationship with doctors (15). This research agenda can guide researchers' efforts to focus on areas of importance to the ultimate end users of their research.