Working with Autistic Adults to Widen Research Participation

Introduction and aims 

Making sure that a wide range of people can take part in research is important so the results are relevant to everyone. However, some people, like those who are neurodivergent, face challenges when trying to join research studies. Some of the reasons for this are; 

• Recruitment methods that are complicated 

• Forms that are hard to read and understand 

• Instructions that are difficult to follow 

To address these issues, we need to develop new, simpler and more inclusive ways to encourage participation.  We will be working with autistic people to tackle these challenges and believe the findings will be relevant to other neurodivergent people too. In Southampton, the PPIE and ‘Finding out Together’ team has created a successful approach called ‘Listening Cafes’. These are informal gatherings where they chat, do craft activities together, and build relationships with communities who are often not heard from. They have used this method successfully with individuals from different backgrounds, including those with lower incomes or diverse ethnicities. We believe this approach can be adapted to engage with autistic people by thinking about where the cafes will be held, how they will be run, and finding out what people prefer.   

This project aims to: 

• Establish specialised Listening Cafes designed to suit the needs of autistic people, making them feel more included and engaged in research activities.  

• Identify the main reasons why autistic people face difficulties in participating in research studies, using NIHR-HSDR-funded Phased-In study as an example. 

• Develop improved methods so that more people from these groups can participate in Phased-In and other primary care research studies. 

Approach 

We will contact a community group who supports autistic people to understand what barriers they face to taking part in research. We will adapt the Listening Cafe model.  Our approach will involve hosting up to four meetings/café events organised by the community group at their preferred locations. These events will focus on: 

1. Building relationships and getting to know each other. 

2. Finding out the best ways to work together.  

3. Recognising the specific reasons why people do not take part in research. 

4. Working together to find solutions to encourage people to take part in research.  

Drawing insights from the NIHR-HSDR Phased-In study, we'll improve our recruitment materials, such as creating easy-to-read documents, short videos, and infographics to make information more accessible.