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Help Shape Research on the Experiences of South Asian Families Caring for a Loved One with Disabilities

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.

Ethnic mental health Carer Forum Update June 2025

By Matthew McKenzie – Carer activist, poet and author

Welcome to a brief update of my ethnic mental health carer group, held monthly.

The meeting began with introductions and technical discussions on connecting to zoom, followed by presentations on research related to mental health care and carer support, particularly focusing on minority communities and paranoia. The group discussed various initiatives including a community intervention study, a carer experience questionnaire, and progress updates on Patient Carer Race Equality Framework reporting across different NHS regions. The conversation ended with discussions on challenges faced by minority carers, including access to mental health services and the need for better support systems, with calls for national collaboration and improved respite services.

Summary

Carer Support Network Expansion Discussion

The meeting began with Matthew introducing the session and addressing technical issues faced by some participants, including a participants video problems, which were resolved. Matthew explained his recent laptop issues and mentioned his involvement with Carers Trust regarding Triangle of Care. The group discussed the expansion of their focus with minority carers and the importance of connecting and networking across the UK. Juliana, a researcher, provided an overview of her work, and participants introduced themselves, sharing their roles and experiences related to mental health care and carer support. The conversation ended with a brief overview of upcoming presentations and discussions.

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