Overcoming barriers to the involvement of deafblind people in conversations about research: recommendations from individuals with Usher syndrome

PLAIN ENGLISH SUMMARY: Usher syndrome is the most common cause of deafblindness worldwide and is estimated to affect between 3 and 6 people in every 100,000. Children are born with hearing loss and develop sight loss in their early years of life. A barrier to the involvement and participation of deafblind people in research is access to information in appropriate formats. The degree of sight and hearing impairment experienced by individuals is variable, so there is not a one size fits all solution. We held a research discussion group, that included five people with Usher syndrome, to consider people’s accessibility needs for an upcoming research project involving this condition. We have identified a number of considerations for including deafblind people in conversations about research: i) using appropriately sized meeting rooms which offer control over lighting, layout and sound; ii) where appropriate, ensuring written/printed materials are high contrast (e.g. black text with a yellow background) and in large (18 point and above), sans-serif fonts (e.g. Arial); iii) identifying the relevant communication support for the individual whether that be sign language interpretation, lip reading, hearing loop, speech to text reporting or a combination; iv) ensuring that there is access to emotional support for both people who are deafblind and their families before, during and after the research. The outcome of this work is a checklist of considerations when planning to hold a research conversation with someone who is deafblind and hinges on earlier interactions to identify the appropriate support needs for the individual. ABSTRACT: Background Usher syndrome is the most common cause of deafblindness worldwide. Children are born with hearing loss and develop sight loss in their early years of life. It is estimated to affect between 3 and 6 people in every 100,000. A barrier to the involvement and participation of deafblind people in research is access to information in appropriate formats. Individuals have varying degrees of sight and hearing impairment meaning there is not a singular solution to supporting all people’s communication needs. There is evidence that severe sight and hearing impairments are used as exclusion criteria in some research studies. This exclusion may extend into involvement activities. Methods Eight people, including five people with Usher syndrome, attended a research discussion group. Through this activity, we identified what to consider when looking to improve the experience of taking part in a discussion about research for deafblind individuals. Results Among contributors two people made use of standard British Sign Language interpretation and one communicated using hands-on signing. Contributors highlighted the limitations associated with signing and lip reading such as exhaustion and clear lines of sight as well as the need for additional formats such as speech to text reporting, and high contrast (e.g. black text with a yellow background) printouts with large (18 point and above), sans-serif fonts (e.g. Arial). A large proportion of discussions were on the importance of wrap around emotional support for people who are deafblind and their family throughout the research pathway. This includes counselling, peer support and sensitive and mindful facilitators of involvement activities. Conclusions The range and specific nature of the communication methods and support offerings that deafblind people depend on are broad and require researchers and involvement practitioners to reach out to deafblind contributors earlier on, in order to appropriately tailor approaches and put the most suitable support in place. Informed by this discussion group, we have developed a checklist of key considerations to support the inclusion of deafblind individuals in research conversations, supplemented with input from the sensory disability charity Sense.