Journal article
Experiences and Knowledge of Family Caregivers Providing End of Life Care to Older Adults at Home
American journal of hospice & palliative medicine, PMID 9008229
01/28/2026
DOI: 10.1177/10499091261419499
PMID: 41604594
Abstract
BackgroundOlder 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.PurposeTo 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?.MethodsUsing 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.ResultsTwelve 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.ConclusionThis 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.
Details
- Title: Subtitle
- Experiences and Knowledge of Family Caregivers Providing End of Life Care to Older Adults at Home
- Creators
- Delaney E Knutson - University of IowaBarbara St Marie - University of Iowa
- Resource Type
- Journal article
- Publication Details
- American journal of hospice & palliative medicine, PMID 9008229
- DOI
- 10.1177/10499091261419499
- PMID
- 41604594
- ISSN
- 1938-2715
- eISSN
- 1938-2715
- Publisher
- Sage
- Grant note
- Nancy Creason Award College of Nursing: NA National Center for Injury Prevention and Control: #R49CE003710
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: National Center for Injury Prevention and Control was received by Barbara St Marie; #R49CE003710; Nancy Creason Award College of Nursing was received by Delaney Knutson; NA.
- Language
- English
- Electronic publication date
- 01/28/2026
- Academic Unit
- Addiction Medicine; Nursing; Injury Prevention Research Center
- Record Identifier
- 9985132207902771
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