Designing inclusive research: four key learnings from engaging neurodivergent communities

Sam Shaw shares insights on how to design research that is inclusive of the needs of neurodivergent participants.

Effective research doesn’t just collect data; it listens to people. By building inclusivity into research from the start, we not only make participation easier, but we also ensure communities are truly heard, leading to findings which can be harnessed to drive meaningful change.

If you’re looking to design inclusive research, this article will share key learnings from a research project we conducted on behalf of StepChange, a national debt advice charity, and Equifax, a credit reporting agency. The research aimed to understand the challenges neurodivergent people face when accessing the help they need with their debt, and to identify how services could be designed to better meet their needs. This was a mixed-methods project involving an online survey and qualitative interviews with neurodivergent people who were struggling with debt.

So, firstly, what is neurodivergence? It is a term used to describe people whose brain functions differently to what is considered typical. In the UK, it is estimated that around 1 in 7 people are neurodivergent. Neurodivergence is an umbrella term, which includes people with ADHD, autism, dyslexia, dyscalculia and other differences that affect how the brain processes information. Inclusive research should aim to be considerate of these cognitive differences, supporting full and fair participation for all.

From the outset, we recognised that taking a fully inclusive approach would empower participants to share their personal experiences and challenges. This not only made participation easier; it led to richer, more representative insights.

Here are four key things to consider when designing inclusive research for neurodivergent participants:

 

1. Embed lived experience input throughout

Beyond the survey and interviews, we sought the involvement of people with lived experience of neurodivergence at every possible stage – from designing our method right through to analysis and reporting.

We gathered input in a number of different ways, allowing ‘experts by experience’ to feed back in a way that suited them. At one end of the scale, we gave people the chance to provide bitesize input, like asking interview participants for their perspectives on how we should present our research findings. This led us to produce an additional short report and an animated video summarising the research. We also asked neurodivergent colleague networks to review our research materials and ensure they were accessible and worded appropriately.

For more detailed lived experience input, we built in time to cognitively test the survey with neurodivergent participants before launch. The feedback from this approach was invaluable and identified improvements that we otherwise wouldn’t have detected. For example, we found that open response text boxes needed clear instructions on what was expected from those completing the survey, along with reassurance that participants shouldn’t worry about spelling or grammar.

Getting meaningful lived experience input can require careful planning and time, but there are always ways to incorporate it, and it enables richer, more grounded insights.

 

2. Provide choice and flexibility

Neurodivergent people can present in many different ways. This includes people with the same cognitive differences, such as ADHD or autism. Therefore, what works for one neurodivergent person may not necessarily work for someone else.

A truly inclusive approach therefore should aim to consider individuals’ diverse needs. For example, we designed the interviews to be flexible, as we knew participants may find certain types of communication more suitable than others. Participants had the choice of speaking to a researcher over the telephone, online, or via a live chat function. They also had the opportunity to preview the research questions to help provide reassurance ahead of the interview, as well as the ability to take breaks, as an hour-long interview can be demanding.  Providing this choice made the research accessible, meaning people were able to participate in the way that best suited them.

 

3. Be proactive in offering support

During this project, we found that stigma and fear of misunderstanding can prevent people from asking for support during debt advice interactions. This experience can also apply to participating in research.

Therefore, when it came to the recruitment of interview participants, instead of simply asking if they needed support to be able to fully participate, we listed examples of what was available and reassured them that additional accommodations could be easily arranged. This proactive approach gave participants the confidence to ask for support, with the knowledge that we were truly able to support them. Having their support needs met meant that participants felt valued, comfortable, and able to contribute to the research.

 

4. Use direct, everyday language

Research materials should aim to be clear and direct, using plain language that is easy to understand for all participants. When technical terms or specialist concepts are necessary, they ought to be explained in simple, accessible ways. Ideally, this could include visuals, such as a diagram, to support different modes of cognitive processing. This approach ensures participants know exactly what is expected of them and can engage confidently with the research.

It’s important not to assume that everyone shares the same level of understanding. This is where lived experience input becomes invaluable. For example, when we tested our survey with people who had ADHD and autism, we discovered that not all participants were familiar with the term ‘neurodivergence’. By explaining the term and placing it in context, we made the survey more accessible and ensured participants did not feel excluded by unfamiliar language.

 

Conclusion

Although this project was designed specifically for neurodivergent participants, the lessons we learned are universal. What makes research more accessible for neurodivergent people also makes it more accessible for everyone. Direct language, flexibility, proactive support, and lived experience input benefit all participants and lead to higher-quality, more representative insights.

Inclusive research is not only good practice; it is essential for generating findings that truly represent those we engage.

Find more about our research with StepChange and Equifax here: Different Minds, Shared Challenges. StepChange

The animated video below was produced to introduce the key research findings:

 

If you would like to know more about our inclusive research practices, contact sam.shaw@qaresearch.co.uk