Caring for a child with cerebral palsy in rural Malawi: A mixed-methods study of caregiver experiences and support needs.

Aims

To explore the emotional, physical, social, and economic demands experienced by caregivers of children with cerebral palsy in Mangochi District and identify coping mechanisms and sources of support.

Method

A convergent, parallel, mixed-methods design was used. Six focus group discussions with primary caregivers (n = 42) were analysed with thematic analysis. A modified 9-item Burden Scale for Family Caregivers was administered to the same 42 caregivers and summarized using descriptive analysis.

Results

Caregivers were predominantly mothers or grandmothers. The Burden Scale for Family Caregivers indicated substantial burden: mean 14.95 (SD = 5.0), with 64.3% classified as high burden and 35.7% as moderate burden. Thematic analysis revealed nine interlinked themes: physical demand, including exhaustion and chronic pain; financial impact, with loss of livelihoods; career and educational opportunities; (fragile) support systems; social participation and relationships; social exclusion; emotional impact; diverse coping mechanisms and resilience including faith and acceptance. Facilitators mentioned were access to support (psychosocial and financial support) and resources such as respite care and assistive devices.

Interpretation

In low-resource settings, families of children with cerebral palsy take on extensive caregiving roles that are deeply influenced by social, economic, and health system contexts. In rural Malawi, caregivers' lived experiences remain underdocumented. Caregiving for children with cerebral palsy in rural Malawi involves pervasive, multidimensional burden, intensified by poverty and stigma but tempered by resilience. Strengthening community-based rehabilitation, assistive technology access, and psychosocial and financial support is essential.