By Brooke Magnusson, Global Health Partnerships Manager, Adara Development
Imagine realising your six-month old baby has a disability. Though it can sometimes take many months– even years – for an official diagnosis, you know something is wrong. Now imagine you live in a community where local customs may interpret a disability as the result of evil spirits or curses. For some families around the world, the recognition that a baby is disabled can be catastrophic.
In some instances, a mother and her child living with a disability could be ostracised from the community or the father might desert them. The financial and emotional consequences of this can be devastating.
It is challenging for a parent in the developed world to find the best resources for their child living with a disability. However, when the child lives in a community such as Nakaseke, Uganda, the lack of resources, social isolation and stigmatisation can severely impact the child and their family.
We know some medical conditions survived at birth result in a greater risk of a disability. For 2.5 million Ugandan children (12.5% of the population) the uphill struggle they will face in their lives is truly heartbreaking.
For many years, Adara has been keen to establish a system to seek out children at risk of a disability and connect them with resources so they can thrive. Today, we are excited to announce the realisation of that dream with a recent grant to improve early brain and child development globally. We are thrilled to be collaborating with Cally Tann from the London School of Hygiene and Tropical Medicine and Maggie Nampijja from Uganda Virus Research Institute (UVRI) / Medical Research Council (MRC) on this important work.
The grant will fund a research study to help us evaluate whether a unique early-intervention programme can improve the quality of life for babies at risk of disability and their families. Little research has been done on providing follow-up care to infants with disabilities in low-resource settings. In fact, little work has been done in high-resource settings, making this a very emergent issue.
Cally and Maggie have developed the ABAaNA Early Intervention Programme to help improve quality of life for babies at risk of disability and their families.
Early intervention with these babies is critical. Many parents of children with impaired development lack the knowledge and confidence to care for their child. Also, malnutrition is common because of the feeding difficulties often experienced by children with a disability. The Early Intervention Programme provides a holistic solution to care for these children and improve their functioning. It also helps the parents gain more understanding and confidence.
The study will begin this year and take two years to complete. After that, we will publish our findings. We are optimistic the results will provide hope and help to the millions of children living with a disability in Uganda and across the world.