Facilitators and barriers to the implementation of a caregiver-led training programme for caregivers of children with cerebral palsy in rural Malawi

Résumé fourni par la source

BACKGROUND: The implementation of caregiver-led training programmes for complex childhood-onset conditions like cerebral palsy is challenging as multiple factors influence outcomes, particularly in rural, resource-constrained settings. Understanding the perspectives of the caregivers and professionals implementing programmes is important to identify practical, cultural, and logistical factors that influence programme outcomes. This qualitative study explored the facilitators and barriers encountered during the implementation of a caregiver-led training programme in rural Mangochi, Malawi. METHODS: In-depth interviews were conducted with physiotherapists and caregivers of children with cerebral palsy who participated in a seven-week feasibility trial of the Malamulele Onward Carer-2-Carer Training programme in August 2023. Semi-structured interview guides informed by the Consolidated Framework for Implementation Research were used to conduct the interviews. The interviews were audio-recorded and transcribed verbatim. Data were managed using NVivo and analysed thematically. An abductive analytical approach was used, whereby themes were initially generated inductively and later interpreted deductively within the framework to enhance conceptual depth. RESULTS: Facilitators of programme implementation included the integration of training into daily caregiving routines, active caregiver engagement, and the logistical support provided by a community-based organisation. A key finding was the unique contribution of expert caregivers, who facilitated sessions using shared language, lived experience, and emotional connection, which enhanced caregiver participation and trust. The expert caregivers' ability to mobilise local resources further supported programme delivery. Barriers included time constraints for covering some modules, slow learning and particular skill acquisition challenges among older caregivers and external factors such as poor access to transportation and limited family support for home practice. While both expert caregivers and therapists effectively facilitated the programme, expert caregivers encountered occasional challenges with content presentation when delivering sessions. CONCLUSION: Reflections from caregivers and physiotherapists in rural Malawi highlighted the strengths of integrating lived experience into programme delivery. Expert caregivers fostered engagement and trust, helping to address participant learning challenges. However, continued mentorship, improving physical access and social support remain crucial for sustaining caregiver-led training programmes and maximising their impact on children with cerebral palsy and their families.

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