The FOCUS Project, an international research study exploring the experiences of South Asian families who have a family member with intellectual and developmental disabilities.

Researchers are seeking to hear from:

• South Asian parents and family carers
• Adult brothers and sisters of people with intellectual and developmental disabilities
• Professionals who work with South Asian families and children with disabilities
• Families interested in sharing their experiences through surveys and discussion groups

The study aims to improve understanding of the challenges, strengths, and support needs of South Asian families, helping to inform future services and policies.

Ways to Get Involved

Work Package 1 – Family Survey
Take part in an anonymous online survey exploring family experiences. Each section takes approximately 10–15 minutes, and participants can complete one, two, or all three parts.

Work Package 2 – Professional Survey
Professionals working with children and young people with intellectual and developmental disabilities from South Asian backgrounds are invited to share their views on family-oriented partnership practices.

Work Package 3 – Online Discussion Groups
South Asian parents and adult siblings are invited to join a small online discussion group lasting around one hour to share their experiences in more depth.

Your Voice Matters

Every family’s experience is unique. By taking part, you can help researchers better understand the realities of caring for a loved one with intellectual and developmental disabilities and contribute to improving support for future generations.

For more information about the FOCUS Project, please visit the study website or contact the research team at focus.project@uea.ac.uk.

To hear more about the project, they will present at my National ethnic mental health carers forum for the 26th of June. Book via my forum page.