Abstract
Background
Older adults and their family caregivers may choose to stay home during end-of-life rather than move into facilities. Members of health care teams strive to create peaceful, fulfilling experiences of families caring for older adults who die at home.
Purpose
To examine the literature regarding our research question guiding our review: What are the experiences and knowledge gaps of family caregivers caring for the older adult at the end of life at home?.
Methods
Using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-SR), a scoping review was conducted. The search was through PubMed, CINAHL, and PsycINFO between 2010 and 2025; and 731 articles were screened further.
Results
Twelve studies were analyzed. Data was organized around the knowledge gaps and experiences of family caregivers had while caring for their loved ones at home at end-of-life. There were 4 themes: (1) lack of information for caregivers about hospice care, (2) difficult communication with providers and members of the healthcare team, (3) financial and schedule burden were reported by caregivers caring for an older adult at the end-of-life, (4) caregivers experienced burden when not communicated about symptom management.
Conclusion
This scoping review highlighted the need for increased information for family caregivers regarding end-of-life care to reduce the challenges and burden for families caring for their older adult at home at end-of-life. Areas for improvement include increased support from family and friends, caregiver respite, increased education about caregiving, and improved communication between hospice programs and home caregivers.
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