Strategies for Including Deaf and Hard of Hearing Participants in Research

Research shows that people who identify as Deaf, deaf, and Hard of Hearing (D/d/HOH) report higher rates of domestic violence. However, a lack of American Sign Language (ASL)–accessible, trauma-informed supports and service workers inhibit D/d/HOH survivors from reporting crimes and accessing services.

Moreover, a lack of research on victimization in the D/d/HOH community keeps policymakers and service providers largely unaware of D/d/HOH survivors’ unique needs. This leaves D/d/HOH survivors with few adequate services.

In response, the District Attorney of New York County funded Barrier Free Living’s (BFL) Deaf Services program through a competitive solicitation in 2017 to increase access to services in New York City for D/d/HOH victims of domestic violence and educate service providers and criminal justice actors about the needs of D/d/HOH survivors.

Since 2019, the Urban Institute, in collaboration with Gallaudet University, has been evaluating this program’s implementation. The following lessons can help ensure D/d/HOH people are equitably included in research.

1. Ensure researchers collecting data from D/d/HOH people have sociocultural and linguistic expertise.
   
   Projects with D/d/HOH participants should have at least one researcher knowledgeable about D/d/HOH culture and fluent in ASL. Qualified researchers recognize signing nuances, understand social mores and norms of the Deaf community, and know that communication, understanding, and expression differ across D/d/HOH people. This researcher for our evaluation is a practicing social worker and researcher through Gallaudet University with ASL fluency and 33 years of professional experience in the D/d/HOH community.
2. Build trust between the research team and the community.
   
   Because of the insular nature of the Deaf community and the mistrust D/d/HOH people may have for external, hearing researchers, research teams must prioritize building trust and rapport with project partners. 
   
   To facilitate open and clear communication, set aside time up front and over the course of the project for researchers and project stakeholders to discuss project goals and progress and to ask and answer questions. For example, our team participated in a formal training on Deaf culture during our first visit to BFL. Over the course of the project, we met quarterly with the BFL Deaf Services staff to discuss the study, our progress and challenges, and staff concerns.
3. Ensure D/d/HOH participants represent diverse racial, ethnic, linguistic, and cultural groups.
   
   There are approximately 300 distinct sign languages around the world. As such, D/d/HOH people born outside the United States may not be familiar with or rely on ASL as their primary mode of communication, and their experiences as refugees or immigrants will likely be different than US-born D/d/HOH people.
   
   Further, D/d/HOH people with additional disabilities, such as people who are DeafBlind or have mobility challenges, as well as D/d/HOH people of color, may have different experiences and face additional challenges—including double oppression, lack of culturally appropriate services, communication barriers, and societal prejudice. Research projects with D/d/HOH participants should prioritize diversity among their sample to ensure findings are inclusive and representative of the D/d/HOH population.
4. Provide accessible and diverse forms of communication.
   
   Multiple, accessible forms of communication are key to ensuring research with D/d/HOH people is successful and respectful. When possible, certified interpreters should be arranged for interviews, focus groups, and other qualitative data collection efforts. In cases when interpreters cannot be arranged, or are not practical, technologies that support visual communication, such as video remote interpreting, video relay services, and videophones, should be used.
   
   Over the course of our study, we relied on a combination of interpreters and technology to facilitate interviews with D/d/HOH people. We worked with interpreters when hearing researchers or other people were included in the conversation or interview and videophone when both the researcher and respondent were fluent in ASL.
5. Think creatively and comprehensively about developing suitable research tools and protocols.
   
   Recruitment and data collection for general research often does not consider the unique research needs of D/d/HOH people. In many cases, D/d/HOH people are excluded because study materials and data collection tools are not accessible to them, and researchers are not trained to modify materials to include D/d/HOH people in their study population.
   
   In our study, we drafted written materials—including outreach emails and flyers, informed consents, and surveys—using clear, concise wording. BFL staff reviewed the interview and survey questions to ensure they were accessible to D/d/HOH clients and that staff would be comfortable recruiting their clients. As needed, we adapted the tools and recruiting strategies based on feedback from BFL.
   
   We embedded ASL videos in our online survey to ensure D/d/HOH respondents could see the consent, questions, and responses. Our ASL-fluent researcher recorded a video introducing herself and the study in a survey outreach email. We also created a simple flyer with a QR code to the survey that could be physically handed to respondents.

All studies are stronger when researchers establish mutual understanding, collaboration, and effective communication among themselves, project stakeholders, and the study population. This is even truer for research involving D/d/HOH people because of their unique needs and additional barriers to participation in research.

These strategies helped us secure buy-in and support from stakeholder partners and conduct a study centered on the perspectives of D/d/HOH staff and survivors. We hope these recommendations help other researchers include D/d/HOH participants in their studies and begin to close the significant research gaps that affect the availability and accessibility of programs and policy.

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