Health literacy of primary caregivers of children with cerebral palsy in low- and middle-income countries: a systematic review

Objective We aimed to synthesise existing literature on the health literacy of primary caregivers (PCGs) of children with cerebral palsy (CP) in low- and middle-income countries (LMICs). Design Systematic review informed by Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Data sources Ovid MEDLINE, Ovid EMBASE, CINAHL via EBSCO, Scopus and Web of Science were searched from inception to January 2024. Eligibility criteria Original studies including observational or experimental data, examining health literacy and/or health literacy proxies using Optimising Health Literacy and Access domains as indicators (eg, education, social support, self-efficacy, health attitudes, reading and writing skills) in primary caregivers of children with CP in LMICs. Data extraction and synthesis Data from included studies were systematically recorded using an Excel template, with information extracted independently by two reviewers. We used the Study Quality Assessment Tool developed by the National Health, Lung, and Blood Institute. Results The systematic review yielded 2734 articles, with 15 eligible for inclusion. None used health literacy (HL) measurement tools, and there was limited reporting on specific HL domains. Studies spanned 11 LMICs across 5 major regions. PCGs, predominantly mothers, exhibited varying levels of service awareness, service utilisation and social support. Literacy levels significantly impacted HL proficiency, exposing a notable research gap in LMICs. Conclusions This study presents the first comprehensive analysis of health literacy among PCGs of children with CP in LMICs. Findings reveal a striking absence of tailored health literacy literature, impacting current considerations of PCGs' understanding and management of their child's condition. Additionally, challenges in social support, healthcare navigation and low literacy levels further hinder effective caregiving in LMICs.