Breaking Barriers: Improving healthcare access for neurodiverse and disabled children in under-represented communities

3 mins read

Wednesday 13 March 2024

Tags: access to health care, neurodiverse children and young people

Last year, we told you about a research grant Contact has been awarded by National Institute for Health and Care Research (NIHR). We’re investigating what stops under-represented communities in the North West of England from accessing health care services.

Since then, we’ve been working in partnership with Alder Hey Children’s Trust, Edge Hill University and the North West National Network of Parent Carer forums ( NW NNPCF) to develop this work further.

We know that many disabled and neurodivergent children and young people from under-served communities such as Black, Asian and minority ethnic groups and Traveller communities have less access to healthcare and poorer health outcomes. They can face discrimination, disadvantage and exclusion and have less choice and control about their health care.

So far, research in this area has been limited. So this project offers a unique opportunity for us to work in partnership with community members to explore what could help improve access to healthcare for disabled and neurodivergent children, young people and their parent carers.

What progress have we made so far?

We are currently working with three communities – Gypsy, Roma and Traveller families, refugee and asylum-seeking families and parent carers with disabilities and neurodivergence – and community advisers to listen and learn more about their experiences of accessing health care for their children. So far, we have: 

  • Talked to parent carers with a disability and/or neurodivergence to plan how the research project will work within each community, including the best ways to collect information from them. We have co-produced a survey for parents with our parent advisory group.
  • Worked with young people and community advisors to help us develop our plans and hear more parent carers from Gypsy, Roma and Traveller families in Rochdale. This includes hearing from children and young people in the area, including two school-based ‘story telling’ activities.
  • Liaised with two charities in Liverpool who have linked us up with refugee families with disabled and neurodiverse children. The charities are now advising us on how we should work with families to gather data, including planning interview scripts and interpreters. A charity in Manchester and another in St Helens is linking us with young people with SEND and young people who are refugees, to advise on how we will hear young people’s views and experiences.

What have we learnt?

Although the project is still in it’s early stages we have already learnt that:

  • We should never assume different community groups all want to share their views and experiences in exactly the same way. We found that while some parent carers will be happy to complete a survey, for others a survey is not helpful. Some families would like us to talk to them in their own homes and others might be willing to take part in a group online discussion.
  • Culture and language need to be considered carefully because they can have a huge impact on how we should be asking questions and gathering views. For example, for the Roma Gypsy community, storytelling is important so we’re using storytelling approaches to support conversations. 
  • It’s important to learn about each community’s culture and circumstances before starting conversations. Working with community leads can help demonstrate our respect for communities and willingness to listen and develop culturally appropriate approaches.