Empowering caregivers of children with disabilities
Our research is concerned with the development of sustainable interventions for children with developmental disabilities in low-income countries.
When resources are limited, children with functional impairments underlying disability are often disadvantaged. Working with our Kenyan partner, the Kenyan Medical Research Institute (Coast), through a series of studies in Kenya, we found evidence of workforce deficiencies, poor coverage and limited capacities in health and educational provision, with poor service usage the distance between services.
Initially, we piloted a low-cost, home-based communication intervention for children with a range of developmental disabilities. Using caregivers as agents for change avoided dependence on the inadequate external services. While the project showed some positive outcomes, it was still restricted in its coverage.
Next we focused on transforming the attitudes to, and understanding of, disabilities within local communities by using those with experience of disabilities to train people in disability awareness. This informed our current project, SEEK, a locally supported enterprise that focuses on caregiver self-help. Using the ‘empowerment’ component of the inclusive development/community-based rehabilitation matrix (World Health Organisation, 2010), we aim to:
- improve access to education and healthcare for children and young people with disabilities
- expand community participation
- improve social support for caregivers.
Participating groups and their members report economic success, for example by securing bank accounts and making profits from income-generation activities. We also expect growing portfolios for community-based and non-government funded organisations in this area.
The impact in terms of service provision is expected to target Kenya’s county health and education ministries, with self-help groups gradually registering with their county government.
Because of its cultural relevance, low-cost and sustainability, SEEK could be replicated in other African countries and linked to community-based rehabilitation initiatives worldwide.
As a result of facilitating the development and evaluation process across the self-help groups, a set of illustrated guidelines is being developed that can be distributed more widely. We aim to launch these guidelines at the next Afri-CAN CBR network conference in Zambia (2018) for use in other low-income countries in Africa and beyond.