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. 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.

中文翻译：

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克服聋盲人参与研究对话的障碍：来自 Usher 综合征患者的建议

Usher 综合征是全球最常见的耳聋原因，估计每 100,000 人中有 3 至 6 人受到影响。儿童天生就有听力损失，并在其生命的早期发展为视力丧失。聋盲人参与和参与研究的一个障碍是以适当的格式获取信息。个人所经历的视力和听力障碍程度是可变的，因此没有一刀切的解决方案。我们举行了一个研究讨论小组，其中包括五名 Usher 综合征患者，以考虑人们对即将开展的涉及这种情况的研究项目的可访问性需求。我们已经确定了将聋盲人纳入研究对话的一些考虑因素：i) 使用适当大小的会议室，可以控制照明，布局和声音；ii) 在适当的情况下，确保书面/印刷材料具有高对比度（例如黄色背景的黑色文本）和大号（18 点及以上）无衬线字体（例如 Arial）；iii) 确定个人的相关沟通支持，无论是手语翻译、唇读、听力循环、语音转文本报告还是组合；iv) 确保聋盲人及其家人在研究之前、期间和之后都能获得情感支持。这项工作的结果是在计划与聋盲人进行研究对话时的考虑清单，并取决于早期的互动以确定个人的适当支持需求。背景 Usher 综合征是全世界最常见的耳聋原因。儿童天生就有听力损失，并在其生命的早期发展为视力丧失。据估计，每 100,000 人中就有 3 到 6 人受到影响。聋盲人参与和参与研究的一个障碍是以适当的格式获取信息。个人有不同程度的视力和听力障碍，这意味着没有单一的解决方案来支持所有人的沟通需求。有证据表明，在一些研究中，严重的视力和听力障碍被用作排除标准。这种排除可能延伸到参与活动。方法 8 人，包括 5 名 Usher 综合征患者，参加了一个研究讨论组。通过这项活动，我们确定了在寻求改善参与聋盲人研究讨论的体验时需要考虑的事项。结果 在贡献者中，两人使用标准的英国手语翻译，一人使用手语进行交流。贡献者强调了与手语和唇读相关的限制，例如疲惫和清晰的视线，以及对其他格式的需求，例如语音转文本报告和高对比度（例如黄色背景的黑色文本）打印输出（18点及以上），无衬线字体（例如 Arial）。大部分讨论是关于在整个研究过程中为聋盲人及其家人提供情感支持的重要性。这包括咨询、同伴支持以及参与活动的敏感和有意识的促进者。结论 聋盲人所依赖的沟通方法和支持服务的范围和具体性质是广泛的，需要研究人员和参与从业者尽早接触聋盲人贡献者，以便适当地调整方法并提供最合适的支持。根据该讨论组的通知，我们制定了一份关键考虑因素清单，以支持将聋盲人纳入研究对话，