Welcome to EXPAND

Exploring the EXPeriences of Accessing services and understanding Neurodevelopmental Disorders for ethnic minorities in England (EXPAND)

Who funds EXPAND?

EXPAND is funded by  the National Institute for Health and Care Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number NIHR206134). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

What is the aim of EXPAND?

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. 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.

What do we already know on this topic?

We do not know what prevents ethnic minority groups from accessing child mental health services for neurodevelopmental disorders in England. Research from other countries suggests parents from ethnic minority groups may have difficulty understanding and identifying symptoms of these disorders. Also, they might not know how and where to access services, or the services may not be culturally sensitive.

What will EXPAND do?

Our team includes people with lived experiences and healthcare professionals. Our lived experience members and partner charities will form a Patient and Public Involvement (PPI) group from ethnic minority groups in England. This PPI 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 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. Further funding will be sought to develop tools to design and test an intervention improve access to child mental health services for ethnic minority groups.