Understanding the lives of caregivers and evaluating a support programme for caregivers of children with disabilities: lessons learnt from Ghana

Background: Four fifths of the estimated 150 million children with disability in the world live in resource-poor settings where the role of the family is crucial in ensuring that these children survive and thrive. Despite their critical role, evidence is lacking on how to provide optimal support to these families. Study aims: This study explores the lives of caregivers of children with cerebral palsy in Ghana, and the impact and underlying processes of a participatory training support programme. Methods: A mixed methods study was conducted. This consisted of a pre-post survey conducted before (baseline) and after (endline) the training programme, with 75 caregivers enrolled from across eight districts in Ghana. A qualitative longitudinal study was conducted with 18 caregivers from four districts. Key findings: Low levels of caregiver knowledge, pervasive stigma, and physical and emotional exhaustion, were all common themes at the outset. In terms of the programme impact, there were significant improvements in caregiver quality of life. Knowledge levels about their child’s condition increased, and confidence levels increased in how to care for their child, including some aspects of improved care practices. Child outcomes were mixed, with some improvements in the child’s health, but levels of malnutrition remained high. The support group mechanism appeared to foster improved caregiver wellbeing and elements of caregiver empowerment through the acquisition of new skills, feeling valued by the group membership, and having a social support from this network. The latter included a realisation by caregivers that they were not alone, with a reduction in self-stigma, as well as having a safe space for problem-solving. Importantly, through sharing the experience of other caregivers, this engendered a sense of hope that their child’s life can improve. The complexity and non-linearity of the caregiver empowerment journey was illuminated. There were important gains in individual dimensions of power and the nascent emergence of collective power with other group members, but macro and structural issues limited possibilities for change. The study illustrated the pervasiveness of disability-related stigma in the Ghana context for caregivers with a child with cerebral palsy. Stigma is multi-layered, and a range of factors interact with disability-related stigma, including gender and poverty. The evidence indicates that the caregivers in this study in Ghana can experience a form of disablism, which both impacts upon themselves, but also has repercussions on caregiving. Conclusion: The findings illuminate the multi-faceted and interacting factors that directly and indirectly affect the lives of caregivers, and that a better understanding of the context of the caregiver-child dyad context is needed. A model of childhood disability requires that caregivers, and the gendered nature of caregiving, needs greater consideration, for a more transformative approach to childhood disability.