Navigating the caregiving abyss: A metasynthesis of how family caregivers manage end-of-life care for older adults at home

Background: Demographic changes (global aging, decreased fertility, increased home deaths) will present a critical need for end-of-life family caregivers of older adults at home. In order to support these family caregivers, we need to better understand their experiences, struggles, and needs. Aim: To describe and explain the process of end-of-life caregiving as experienced by family caregivers of older adults residing in the home setting. Design: The Preferred Reporting Items for Systematic Reviews and Metaanalysis (PRISMA) guidelines and Sandelowski and Barroso’s procedural steps for a metasynthesis review guided this study. Data sources: Qualitative and mixed methods literature from CINAHL, Medline, PsycINFO, and EMBASE databases and information from professional organizations were reviewed for studies that focused on family caregivers providing end-of-life care to older adults residing in the home setting. Results: A total of 24 studies were identified. Family caregivers engaged in the process of “navigating a caregiving abyss” when providing and managing end-of-life-care for older adults at home. The “caregiving abyss” consisted of four phases: (1) managing multiple roles, (2) encountering challenges, (3) mobilizing resources, and (4) acknowledging death is near. During the process family caregivers strived to “live day by day” and “maintain normalcy” to achieve the goals of honoring life’s final wishes and provide home death. Conclusion: Family caregivers of older adults at the end of life navigate a variety of challenges. The findings provide a conceptual framework to help guide the development of education, interventions, and health policy to meet family caregivers’ needs in providing quality end-of-life care.