The CZS support innovation investigates whether a community-based training program for carers of babies affected by CZS can improve the quality of life, functional ability and nutritional status of children with CZS and the quality of life of their carers. The innovation integrates a facilitated, participatory, community-based modular program to empower care-givers to maximize their child’s development and health. The model of empowerment, through peer-support and information sharing, aims to minimize the social, emotional and financial impacts on the babies and their families and to address stigma within the community. The use of not only therapists but ‘expert care-givers’, themselves parents of children with CZS, in the role of facilitators helps to address stigma within the community and promotes safeguarding in this vulnerable population.
The CZS support innovation is modeled on the “Getting to Know Cerebral Palsy” program that 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. To date, this program has been downloaded more than 2000 times, and is being used globally.
The adaptations in the present innovation include a focus on early stimulation, specific health needs (vision, epilepsy), and importantly, integration of a psychosocial support component. Integration of this component into each session was preferred to adding a separate session on mental health, as this session could be quite difficult, especially since sessions are not led by clinicians.