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

Posted on 2 September 2026 by Pippa McClounan

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A summary of a research study supported by TA

Children and young people from minoritised backgrounds gain access to neurodevelopmental disorder support services at lower rates and typically later than their white counterparts. Researchers from the University of Nottingham set out to explore why this is happening by speaking to:

• Caregivers from Indian, Pakistani and Black African backgrounds with children who have suspected or diagnosed neurodevelopmental disorders
• Young people from minoritised ethnicities with diagnosed or suspected neurodevelopmental disorders
• Healthcare and educational professionals that work with and support children, young people and their families from minoritised ethnic backgrounds with neurodevelopmental disorders.

This study aimed to explore the experiences of minoritised ethnic families seeking neurodevelopmental disorder healthcare services in England from multiple perspectives.

Lay summary of findings

The EXPAND study set out to explore why there is unequal access to NHS neurodevelopmental disorder services for children and young people from minoritised ethnic backgrounds. To do this we:

• Collaborated with a diverse public and patient involvement group throughout the study
• Interviewed 42 caregivers from Indian, Pakistani and Black African backgrounds
• Surveyed 254 healthcare professionals and held 2 focus groups
• Surveyed 142 educational professionals and held 1 focus group

From this we found that parents felt that:

• There is a lack of clear information early on. Available information can be hard to understand and hard to share with family
• Communication with professionals can be challenging. Language and cultural differences can make it hard to fully explain what is going on with their children. Parents and caregivers can be misunderstood, not taken seriously. This led to families feeling ignored or dismissed
• The System is complex. Families found navigating neurodevelopmental disorder support systems to be difficult. Language barriers, cultural difference and low trust made the system even harder to use.

We found professionals felt that:

• A lack of awareness of neurodevelopmental disorders hindered family's ability to recognise the signs and seek help.
• Stigma within some communities stopped some families from seeking help
• Discrimination was happening within families, communities and services
• Families did not always understand how and where to seek support.

We found that to help overcome this inequitable access to services we need to:

• Provide culturally tailored information that is easy to understand and share. This helps to break down stigma, raise awareness and help families recognise the signs earlier and know where and how to seek help for their children and young people.
• Provide community-based services that respect culture and beliefs. This helps to build trust and improves access to support.
• Provide professionals with cultural competency training, helping them better understand how families from minoritised background's views may differ from theirs and to work with them to support the children and young people.

Watch this animation which was created as a summary of the research findings

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