Coping of informal caregivers for people with terminal illnesses: A systematic review and metasynthesis

Abstract

Background:

Informal caregivers are vital in providing end-of-life care to their loved ones. However, there is a lack of systematic understanding of their coping strategies during the caregiving process.

Aim:

To synthesize qualitative data about coping strategies of informal caregivers of people with non-dementia terminal illnesses with a prognosis of less than 12 months.

Design:

Systematic review and thematic synthesis of qualitative studies and qualitative components of mixed-methods studies, appraised using the Mixed Methods Appraisal Tool.

Data sources:

Seven electronic databases (Airiti Library, CINAHL Plus, PsycINFO, PubMed, Scopus, Wanfang, and Web of Science) were searched from inception to August 2025.

Results:

Analysis of 44 studies involving 691 caregivers generated five themes revealing that caregivers employ both adaptive and avoidance strategies. Caregivers managed distress by avoiding acknowledgment of death and decline, mobilizing professional and social support networks, cognitively reframing their situations through positive reappraisal and acceptance, deriving meaning through fulfilling relational obligations and spiritual beliefs, and maintaining normalcy by continuing personal routines and shared activities with care recipients. Coping emerged as a complex, fluid process wherein caregivers shifted between strategies to manage dual stressors: caregiving responsibilities and pre-death grief encompassing losses of identity, time, and anticipation of death.

Conclusion:

Caregivers dynamically navigate simultaneous stressors of caregiving demands and pre-death grief through multiple strategies. Palliative care services should integrate routine caregiver grief assessment throughout the illness trajectory and implement early interventions addressing both caregiving stress and pre-death grief, rather than only addressing caregiving burden and bereavement.