Invisible Pillars With Hidden Burdens: A Scoping Review on the Challenges of Informal Caregivers for Older Adults in Home-Based Palliative Care.

Objective

This study aimed to show evidence from existing literature about the experiences and challenges managed by informal caregivers of older adults in home-based palliative care.

Methods

A scoping review was conducted using Arksey and O'Malley's framework. Eight electronic databases, Academic Search Complete, AgeLine, APAPsycArticles, Cumulative Index to Nursing and Allied Health Literature (CINAHL) Complete, Global Health, Medline, PsycINFO, Social Work Abstracts, and Web of Science from the EBSCO platform were searched. After full text review, data were extracted and charted. Major themes were established following thematic content analysis.

Results

A total of 3859 records were yielded through the electronic database search. After duplicate removal and screening of titles/abstracts and full-texts, a total of 11 studies were included. From these 11 studies, themes were identified: (1) exhaustion and health deterioration, (2) the strain of multifaceted obligations, (3) insufficient medical support and training for caregivers, (4) lack of respite care, and (5) financial strain in caregiving. There is a need for large-scale evaluations of interventions and informal caregivers should be engaged in this process.

Conclusions

There is a need to recognize and support a wide array of informal caregivers socially and financially to help them obtain more services and resources. Policymakers need to make more accessible resources and the existing benefits more customized to the unique needs of the informal caregivers of home-based palliative patients.