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One of the most understudied health disparity populations in the United States is the Deaf community, a sociolinguistic minority group of more than 500,000 individuals who communicate via American Sign Language. Research on Deaf health disparities is lacking due to inaccessible recruitment, sampling, and data collection procedures, as well as the fundamental disconnect between medical and cultural views of Deaf people. A potential starting place for addressing inaccessible research methods and mistrust of the biomedical research community is the careful reconsideration of the traditional informed consent process, often a Deaf individual's first point of contact with the research world. Yet, most Deaf individuals experience obstacles to engaging in informed consent due to differences in language and development compared to hearing individuals. In response to these issues, our team led a three-phase, formative, community-engaged approach to adapt the informed consent process and train research staff in the updated method so that all required components are properly communicated and understood. The goals of our work were to promote Deaf engagement in research about the Deaf community, increase the number of Deaf individuals who participate in general population biomedical research, and generalize our findings to improve research accessibility for the general population.

Deaf individuals experience significant obstacles to participating in behavioral health research when careful consideration is not given to accessibility during the design of study methodology. To inform such considerations, we conducted an exploratory secondary analysis of a mixed-methods study that originally explored 16 Deaf trauma survivors' help-seeking experiences. Our objective was to identify key findings and qualitative themes from consumers' own words that could be applied to the design of behavioral clinical trials methodology. In many ways, the themes that emerged were not wholly dissimilar from the general preferences of members of other sociolinguistic minority groups--a need for communication access, empathy, respect, strict confidentiality procedures, trust, and transparency of the research process. Yet, how these themes are "applied" to the inclusion of Deaf research participants is distinct from any other sociolinguistic minority population, given Deaf people's unique sensory and linguistic characteristics. We summarize our findings in a preliminary "Checklist for Designing Deaf Behavioral Clinical Trials" to operationalize the steps researchers can take to apply Deaf-friendly approaches in their empirical work.

Objective: Deaf trauma survivors are one of the more underserved populations in behavioral health care and experience significant obstacles to seeking help. Repeated encounters with these barriers fuel negative perceptions and avoidance of behavioral health treatment. The current study sought to explore Deaf trauma survivors' help-seeking experiences and elicit their recommendations for improving Deaf behavioral health services in Massachusetts., Method: We conducted semistructured American Sign Language interviews with 16 trauma-exposed Deaf individuals that included questions from the Life Events Checklist and the PTSD Symptom Scale Interview and questions about Deaf individuals' help-seeking behaviors. Qualitative responses regarding help-seeking experiences were analyzed using a grounded theory approach., Results: In the aftermath of trauma, our participants emphasized a desire to work with a signing provider who is highly knowledgeable about Deaf culture, history, and experience and to interact with clinic staff who possess basic sign language skills and training in Deaf awareness. Most stressed the need for providers to better outreach into the Deaf community-to provide education about trauma, to describe available treatment resources, and to prove one's qualifications. Participants also provided suggestions for how behavioral health clinics can better protect Deaf survivors' confidentiality in a small-community context., Conclusions: Deaf-friendly trauma treatment should incorporate the components of trauma-informed care but also carefully consider key criteria expressed by our participants: direct signed communication, understanding of Deaf history and experience, stringent practices to protect confidentiality, provider visibility in the community, and reliance on peer support and Deaf role models in treatment interventions. (PsycINFO Database Record, ((c) 2017 APA, all rights reserved).)