EXPAND
Research type
Research Study
Full title
Exploring the EXPeriences of Accessing services and understanding Neurodevelopmental Disorders for ethnic minorities in England (EXPAND)
IRAS ID
331088
Contact name
Charlotte Hall
Contact email
Sponsor organisation
University of Nottingham
Duration of Study in the UK
1 years, 6 months, 1 days
Research summary
Aim and background: Neurodevelopmental disorders, including autism spectrum disorder, attention-deficit/hyperactivity disorder, tic disorder, begin in childhood but continue to affect people throughout life. They have a negative impact on children, affecting schoolwork, friendships, and mental health. It is important children can access appropriate neurodevelopmental support which is offered within child mental health services. However, ethnic minority groups are not using these services and we don’t know why. This study aims to understand why not and find out how to help them access services. Our long-term aim is to develop interventions to make it easier for ethnic minority groups to access child mental health services.
Design/methods: Our team includes people with lived experiences and healthcare professionals. Our lived experience members and partner charities will form a Patient and Public Involvement and Engagement (PPIE) group from ethnic minority groups in England. This PPIE group will co-deliver the study. Online focus groups will be conducted with parents of young people from ethnic minority groups who have a possible neurodevelopmental disorder to understand difficulties they have had accessing care. Interviews will be conducted with the young people. Online surveys, interviews/focus groups with health and education professionals will be completed to understand their experiences of supporting ethnic minority groups who are worried they/their child might have a neurodevelopmental disorder.
We will recruit participants from GP practices, specialist mental health services, schools/education, social media, and local community groups. We will look at the findings from these interviews, focus groups and surveys with our wider team and we will use the findings to develop ideas for how to improve access to services for ethnic minority groups. The findings will also be presented using simple visual summaries called infographics. These infographics will be created with our lived experience members, and translated into different languages aimed at families, professionals and policymakers.REC name
West Midlands - Edgbaston Research Ethics Committee
REC reference
24/WM/0063
Date of REC Opinion
14 May 2024
REC opinion
Further Information Favourable Opinion