More than 7.3 million older adults in the United States have difficulty leaving their homes or are completely homebound, yet little data exist on the experiences of homebound older adults and their caregivers. We conducted 30 semi-structured qualitative interviews with homebound older adults and caregivers recruited through home-based medical care practices in Baltimore and San Francisco. Thematic template analyses revealed that homebound older adults experience varying degrees of independence in activities of daily living, although their degree of dependence increases over time. Caregivers have a multifaceted, round-the-clock role. Both patients and caregivers experience burdens including social isolation and guilt. Navigating medical care and caregiving was further complicated by the complexity of the U.S. health care system; however, home-based medical care was viewed as a high-quality alternative to hospitals or nursing homes. Our findings suggest that providers and health care systems should expand the availability and accessibility of home-based care and improve caregiver support opportunities.

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.