The innovation investigates whether a community-based training programme for carers of babies affected by CZS can improve the quality of life, health and well-being of children with CZS and the quality of life of their carers. The innovation integrates a facilitated, participatory, community-based modular programme to empower care-givers in supporting their child’s development and health. The model of empowerment, through peer-support and information sharing, aims to minimise the social, emotional and financial impacts on the children and their families, and to address exclusion and negative attitudes within the community. The use of parents of children with CZS or ‘expert care-givers’ in the role of facilitators helped to address negative attitudes and stigma within the community.
The CZS support innovation is modelled on the “Getting to Know Cerebral Palsy” programme that researchers at the London School of Hygiene & Tropical Medicine (LSHTM) have been instrumental in developing. It is a participatory intervention aimed at increasing the knowledge and skills of the parents at caring for a child with cerebral palsy. Research to date has highlighted the positive impact of the intervention with a provisional evaluation demonstrating a significant improvement in the quality of life of caregivers. This programme has been downloaded more than 2000 times, and is being used globally.
Adaptations made to the CZS support innovation includes a focus on early stimulation, specific health needs (vision, epilepsy), and importantly, the integration of a psychosocial support component. Integration of this component into each session was preferred by both participants and facilitators, as compared to adding a separate session on mental health. This allowed time to build trust and share thoughts and feelings over time.