Peer-reviewed article
Caring for a child with cerebral palsy in rural Malawi: A mixed-methods study of caregiver experiences and support needs.
van der Meijden B, Wedda HJ, Njewa A, Kusate AC, Reis R et al. ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This study explored the experiences of 42 caregivers of children with cerebral palsy in rural Malawi, predominantly mothers and grandmothers. Caregivers experienced substantial burden across physical, emotional, financial, and social dimensions, with 64% reporting high burden levels. The research identified that caregiving was intensified by poverty and stigma but was sustained through resilience, faith, and acceptance. Support needs included psychosocial help, financial assistance, respite care, and access to assistive devices.
Key points
- 64.3% of caregivers were classified as having high burden and 35.7% moderate burden, with a mean Burden Scale score of 14.95 (SD = 5.0)
- Caregivers faced nine interlinked challenges: physical exhaustion and chronic pain, financial loss and lost livelihoods, lost career and educational opportunities, fragile support systems, social exclusion, and emotional impact
- Primary caregivers were predominantly mothers or grandmothers
- Caregivers employed diverse coping mechanisms including faith and acceptance to manage the burden
- Key facilitators of support included access to psychosocial and financial support, respite care, and assistive devices
Limitations
The study was conducted in one district (Mangochi) in rural Malawi and may not be representative of urban areas or other regions. The cross-sectional design cannot establish causal relationships or track changes in caregiver burden over time.
Abstract
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.