Experiences of Informal Caregivers of Terminally Ill Patients in Palliative Care: A Systematic Review

Abstract

Informal caregivers play a vital role in palliative and end-of-life care. However, their experiences are rarely acknowledged or recognized formally within health care delivery systems. This systematic review examined the most recently available peer reviewed literature examining the experiences of informal caregivers caring for terminally ill patients in palliative care focusing on burden, challenges, coping, psychosocial reactions and lived experiences. Eligible studies published from 2021 forward were located via a structured search through PubMed and Google Scholar. Twenty-one studies were ultimately selected for inclusion in this synthesis. Thematic analysis was used to analyze data resulting in the identification of six themes: (1) caregiving as complex work; (2) caregiving under constraint; (3) emotional burden and psychological distress; (4) coping, meaning-making and positive adaptation; (5) role transformation and caregiver expertise; and (6) navigating uncertainty and preparing for dying. These results clearly indicate that caregiving during palliative care is multi-dimensional and influenced by practical, emotional, structural limitations and uncertainty associated with an individual's death. While many caregivers will suffer from burden and lack of adequate support, caregivers have shown the ability to develop resiliency, meaning and expertise in their caregiving roles. Overall, this systematic review supports the recognition of caregivers as both care partners and care recipients within palliative care delivery systems.