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Lenka on including deaf people in south London research

We spoke to CRN South London's Inclusivity Panel Member, Lenka Novak. Lenka is a Deaf Advisor for South West London and St George's Mental Health NHS Trust. As part of Deaf Awareness Month, Lenka has shared her thoughts about how researchers can make their research more inclusive for the deaf community.

How can researchers make their research more inclusive to people who are deaf?

Research study information needs to be accessible, such as produced in plain English, in British Sign Language (BSL) and with visual representations. Researchers should collaborate with the deaf community by setting up a joint panel with deaf members or holding a training event or workshop. Depending on the type of research, for example, a visual demonstration could help deaf participants understand your aims better.

Why is it important that researchers consider the needs of people who are deaf?

For deaf people to take part in and contribute to research, researchers need to ensure that needs are met, such as booking BSL or English language interpreters for information provision, training activities, and panel discussions and translating any study information into BSL.

How can research teams support someone who is deaf during a research trial?

Research teams must provide very clear information about what will happen, what can happen, and how they will support deaf people during the process if things go wrong.

Researchers need to ensure that all of the key information about the study is translated into BSL and repeated for clarification. Interpreters need to be booked for each session. Interpreters also need information before the appointment to familiarise themselves with the context of the research and sessions.

What is your message to the research community about the importance of including the deaf community in the research process?

Include deaf participants in your research, and if you are not sure, ask deaf researchers for any advice and work collaboratively with them. Other things to consider include:

  • connect with the deaf community to establish a good rapport
  • ensure that you communicate through the process with deaf people
  • seek feedback for improvement
  • when seeking a budget, researchers should explore the cost of interpreters and any other related issues before they apply for funding

Is there anything else you'd like to add?

Researchers should understand cultural and societal barriers when conducting research. Language use is often "put off" for many participants, including hearing, which creates a divide within the system. Community involvement is crucial for better research recruitment and, therefore, for better outcomes for everyone. Importantly, I urge researchers not to be afraid to recruit deaf participants in their research!

The views and opinions expressed in this blog are those of the authors and do not necessarily reflect those of the NIHR or the Department of Health and Social Care.