The FOCUS project

Families with a member who has intellectual and developmental disabilities face many challenges, including personal, financial, social, and wellbeing issues. The needs of one person can affect the whole family. These challenges are often worse in countries like India and Sri Lanka, and for South Asian families living in other countries. Parents of South Asian descent often have big concerns, unmet needs, and face community stigma related to a child with intellectual and developmental disabilities. Despite this, these families are often not well represented in disability research.

Understanding the experiences and support needs of South Asian families can help create better family-centred interventions for intellectual and developmental disabilities. This international study, conducted in the UK, US, India, and Sri Lanka, aims to (a) explore the wellbeing and family life experiences of South Asian households with a member who has intellectual and developmental disabilities, and (b) investigate service providers' views on culturally sensitive, family-centred interventions. The study will be carried out through four distinct work packages.

Study information

The objectives of the FOCUS project are:

1. To investigate the psycho-social factors that contribute towards wellbeing in South Asian families with a family member with intellectual and developmental disabilities.

2. To investigate how service providers’ view family-oriented partnership practices when working with children with intellectual and developmental disabilities.

3. To examine the familial experiences, support needs, and narratives of parents, adults’ siblings and adults with intellectual and developmental disabilities.

To achieve these goals, the study will use four different methods: online surveys, online and face-to-face focus groups, and individual interviews. These will involve parents and adult siblings of people with intellectual and developmental disabilities, adults with intellectual and developmental disabilities, and service providers.

The study will be carried out through four different work packages:

Work package 1 and 3: This work package employs a three-part online survey and focus groups to explore the wellbeing and lived experiences of South Asian families who have a member with intellectual and developmental disabilities

Work package 2: This work package uses an online survey to examine the service provider’s view on family-oriented partnership practices.

Work package 4: This work package uses in-person interviews to explore the familial experiences of adults with intellectual and developmental disabilities.

Participate in the study

Participant inclusion criteria for work packages 1 and 3 for parents and adult siblings

• Are you of South Asian descent, meaning you/your parents/grandparents, or ancestors are from South Asian ethnic backgrounds (i.e. Indian/Bangladeshi/Sri Lankan/Pakistani/Bhutanese/Nepalese, or Maldivian)?

• Are you aged 18 years and above?

• Are you a parent / family carer or adult sibling of a person with intellectual and developmental disabilities of any age?

Participants living in the UK / USA / India / Sri Lanka who answered yes to all the above are welcome to participate in the FOCUS project work packages 1 and 3.

Project updates and outputs

We extend our heartfelt appreciation to our lived experience advisory panel for their invaluable time and insights in advising and reviewing various aspects of this project. A special thank you to Al-Imran Chowdhury, Occupational Therapist, Dhaka, Bangladesh, for his exceptional contributions.

Updates

Work package 1 is launched in the UK.

Work package 2 is launched in the UK.

Outputs

Wadnerkar Kamble, M. Bunning, K. (2024). Psychosocial impact, experiences and support needs of South Asian families of children with intellectual disabilities: An integrative systematic review. PROSPERO International prospective register of systematic reviews. CRD42024565317

Research Team

Principal Investigator

Dr Meghana Wadnerkar Kamble (UEA)

Research co-leads

Professor Karen Bunning (UEA)

Dr Mizanur Khondoker (UEA)

Project partners

United Kingdom

Ruth Patil and Anil Patil, Carers Worldwide

The United States of America

Dr Sumithra Murthy, University of Illinois at Chicago, Chicago, USA

India

1. Dr Ram Kumar, National Institute for the Empowerment of Persons with Intellectual Disabilities (NIEPID)

2. Professor Nilesh Thakre, SNDT University

3. Aarti Nair, Sandeep Khanna, and Jo Chopra-McGowan, Latika

Sri Lanka

1. Dr Dinusha Kanatiwela, International Institute of Health Sciences (IIHS)

2. Nayanalie Dassanayake, The Shiranee Joseph De Saram Foundation

Funder

Project partners

Contact us

For more information on the FOCUS project please email focus.project@uea.ac.uk or contact Dr Meghana Wadnerkar Kamble (Principal Investigator) m.kamble@uea.ac.uk