Health Literacy among primary caregivers of Children with Cerebral Palsy (CP) in Low- and Middle-Income Countries (LMIC): findings from the Global LMIC CP Register

Abstract

Health literacy is a critical determinant of health outcomes, particularly in low- and middle-income countries, where caregivers of children with cerebral palsy face significant challenges in managing their child’s condition. This thesis investigates the health literacy of primary caregivers of children with cerebral palsy in low- and middle-income countries, focusing on key determinants, socio-cultural influences, and the potential for peer-led interventions.

The study is structured around three aims: (1) to describe the levels, characteristics, and key determinants of health literacy among primary caregivers in low- and middle-income countries; (2) to profile health literacy in Bangladesh, exploring socio-cultural, economic, and environmental influences; and (3) to evaluate a peer-led intervention to address gaps in health literacy and improve caregiving practices and child health outcomes.

A systematic review identified a major gap in the global literature, with no studies using validated health literacy tools or focusing on cerebral palsy. Maternal education and empowerment emerged as critical determinants. Fieldwork in Malawi and South Africa, along with data from the Bangladesh Cerebral Palsy Register, informed the design of mPower (Mother’s Power), a peer-led initiative aimed at improving health literacy through knowledge-sharing, skill-building, and community support.

Secondary data analysis demonstrated that mPower improved health literacy, caregiving behaviours, and health outcomes for children with cerebral palsy in Bangladesh. This thesis contributes to the growing understanding of health literacy in low- and middle-income countries and proposes a scalable, context-specific model to empower caregivers and improve child health.

The findings underscore the need for research and policy action to close health literacy gaps in resource-limited settings and offer a roadmap for integrating health literacy into public health strategies globally.