Care burden for people with palliative needs in rural Nepal: mixed method study

OBJECTIVES: To explore the level and nature of burden among primary caregivers of people with palliative care needs living in rural Nepal and to understand the sources of support available to them. METHOD: An explanatory sequential mixed-method design was used. A house-to-house survey in two rural districts identified people with palliative care needs. Primary caregivers were invited to complete a structured questionnaire including a modified Caregivers' Burden Scale in End-of-Life Care. A purposive subsample then took part in semi-structured interviews exploring caregiving experiences. Quantitative data were analysed descriptively; qualitative data were analysed thematically. Finally, both data sets were integrated and triangulated to gain deeper insights. RESULTS: 52 caregivers of 58 people with palliative care needs participated; 42 (81%) were women, most commonly daughters-in-law (44%) and wives (23%). 83% reported high levels of emotional, physical and social burden, often feeling isolated and exhausted. Families provided most support, followed by neighbours. Only 38% reported any support from health professionals and 69% had little or no knowledge of the cared-for person's clinical condition. CONCLUSIONS: Primary caregivers in rural Nepal are predominantly women who experience multidimensional burden, with limited information and formal support. Palliative care services should recognise and respond to caregiver needs, building on family and community resources and empowering caregivers within primary care-based models of palliative care.