Global project to address major gap in disability research for South Asian families
By: Communications
UEA researchers have launched a major international study to better-understand the experiences of South Asian families caring for relatives with intellectual and developmental disabilities.
The study will uncover the often-hidden pressures these families face when supporting relatives with disabilities such as Down’s syndrome, autism, cerebral palsy and Prader-Willi syndrome.
Now, the team are looking for parents, family carers, and adult siblings of those affected to take part in the UK, US, India and Sri Lanka.
Facing stigmas
The team say these families are largely “missing” from global disability research.
As a result, many are facing stigma, financial pressure and major barriers to getting support.
The study is one of the first international efforts to put South Asian families’ experiences at the centre of disability research.
Dr Meghana Wadnerkar Kamble, from UEA’s School of Health Sciences, said: “Intellectual and developmental disabilities are a broad group of conditions, present from birth, that affect a person's physical, intellectual, or emotional growth, impacting learning, reasoning, social skills, and daily living.
“We know that South Asian families supporting relatives with intellectual disabilities may have unmet needs, and face barriers to accessing support.
“Yet their lived experiences remain disproportionately absent from research and service design.
“We want to change that.”
To bridge this gap, the UEA project will centre the voices of South Asian families in a cross country effort to drive change and improve understanding.
“We have identified a major gap in understanding the lived experiences and support needs of South Asian families, who are caring for loved ones with intellectual disabilities.
“These families often face significant personal, financial, social and wellbeing challenges - pressures that are particularly acute in countries such as India and Sri Lanka, as well as within South Asian communities in the UK and beyond.”
Unique perspectives
Participants will be asked to take part in online surveys, focus groups and interviews – with each group offering a unique perspective on their lived experience.
By gathering perspectives across generations and family roles, the project will highlight long term support needs and the often hidden pressures experienced by families.
Dr Wadnerkar Kamble said: “We want parents, carers and adult siblings of South Asian descent to get involved.
“This is a vital opportunity to help shape better, more culturally aware support for families worldwide.”
Researchers will also examine the perspectives of service providers, exploring how they understand and implement culturally sensitive, family centred practices when working with children and adults with intellectual and developmental disabilities.
Their involvement will help shape more culturally responsive and effective support for families.
For more information about taking part, visit https://www.uea.ac.uk/groups-and-centres/projects/focus-project
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