Caregiving burden in palliative care: exploratory mixed-method study

Informal family caregivers are often the primary providers of care for patients with life-limiting illnesses. Although supporting these caregivers is a core component of palliative care, there is a notable lack of context-specific research on caregiver burden from Southeast Asia. This study aimed to examine the experience of caregiving in a tertiary hospital in Malaysia with consultative palliative care services, exploring both the burden experienced and the factors that mitigate or exacerbate it.

A qualitative-dominant mixed-method study using an explanatory sequential design was conducted in a Malaysian tertiary hospital. Sixteen informal family caregivers were purposively sampled. The 12-item Zarit Burden Interview (ZBI-12) was used to assess caregiver burden, followed by semistructured interviews. Data were thematically analysed, and findings from both phases were synthesised.

ZBI-12 scores indicated low to moderate burden: 50% low, 31% moderate and 19% high. Eight key themes emerged. The four contributing factors were impact on personal life and identity, emotional and psychological strain, physical challenges due to direct care responsibilities and financial burden with resource limitations. Protective factors included coping strategies and resilience, having support systems, access to training and resources, and spiritual coping. Caregivers reporting lower burden levels demonstrated more protective than contributing factors.

Informal family caregivers of palliative care patients often experience significant caregiving burden due to multiple contributing factors. The presence of protective factors can help mitigate its effects. Interventions that enhance caregiver training, provide psychosocial support and improve access to resources may help reduce this burden.