A global need
Across the world, over 50 million children live with developmental disabilities, such as congenital zika syndrome and cerebral palsy. Usually, the main carers for children with disabilities is the family, who often have access to very few services able to provide family and clinical support. This puts these families under enormous strain. There is a large and growing need to empower and strengthen families of children with disabilities, in order to help them maximise health and well-being of their children. This is our aim.
How we help
We start by identifying themes for research that will help to give children with developmental disabilities, and their families, an increased opportunity to thrive.
We then conduct innovative research programmes with caregiver groups, and put the results into practice at community, health service and health system levels. Through the International Centre of Evidence in Disability, we have developed strong collaborative research partnerships, bringing together world-class scientists, families in low-resource settings and established research organisations in Bangladesh, Brazil, Colombia, Ghana, Uganda and Rwanda.
An international and multidisciplinary team
Our team includes researchers in health and disability, doctors specialising in child and new-born health, physiotherapy, occupational therapy, speech therapy and audiology, social sciences, psychology, epidemiology, and biostatistics. We also supervise Masters students, and mentor junior researchers, to help them gain experience in research design, methods and analysis within Ubuntu, ABaANA and Juntos.
What are Ubuntu, ABaANA and Juntos?
These three programmes harness peer psychosocial support to help improve carers’ skills in caring for their child. They achieve this through a modular session programme, which offers practical advice for care (e.g. feeding, movement), and which helps the carer understand issues such as early stimulation and disability rights. Each session is 3 – 4 hours long, and trained facilitators encourage the learning process through the use of a participatory approach. When we talk about a ‘participatory approach’ to learning, we mean that the facilitators and carers work together, and carers’ learn through sharing their own experiences and realities about topics that are important to them. Each group includes around 10 children and their carers – these are often mothers, but fathers and other family members are also encouraged to take part. The groups are often held in the local community to reduce the travel burden and support the formation of local care networks, and others may be held in a local health facility, school or other convenient place of the groups choosing .