Many research studies have failed to fully engage the Deaf community, leading to confusion, mistrust, and refusal to participate in the research process²² and a cross-cultural conflict between the Deaf and research communities (Figure 2). Many Deaf individuals lack understanding of the risks and benefits of research participation and how their participation can help reduce disparities in their communities.

The NCDHR partnered with the DHCC to raise research knowledge and interest among Deaf community members. DHCC members were encouraged to pass an Ethical Principles in Research Program examination before they could become involved with the research process. The high level of written English proficiency required by the examination posed a barrier for many Deaf members. The DHCC, with NCDHR’s support, created a research ethics training class in ASL that reviewed the contents of the Ethical Principles in Research Program for all DHCC members.³⁴ The process of delivering accessible research materials not only allowed community members to become active collaborators with the researchers, it also increased their understanding of the academic research environment.

To minimize mistrust, the NCDHR met monthly with the DHCC and provided a series of ASL-accessible town hall meetings and video-based blogs (vlogs; Table 2). Deaf individuals, regardless of age or background, are frequently savvy with new technology, including the use of “smartphones,” social media, and videophones (i.e., video-based phones that use a TV and Internet connection). These tools help to remove communication barriers and provide a way to disseminate information quickly and effectively. Social media tools, primarily Twitter and Facebook, helped to inform and recruit participants for existing research projects based on findings from the DHS. For example, a staff member used Facebook and Twitter to share information and send weekly “tweets” educating Deaf individuals on a variety of health topics, including obesity awareness and healthy eating.^35,36 The “shared” information and “tweets” engaged Deaf individuals to learn more about their health and ability to join in a randomized weight loss study designed for Deaf individuals.

Engaging Deaf individuals in research was also critical for NCDHR to ensure effective survey adaptation and translation. The English-based BRFSS, designed for telephone use, required extensive translation and adaptation through the Translational Work Group (TWG) to develop the DHS. Deaf ASL users, familiar with translation work, formed a core group of the TWG. A common translation challenge was trying to seek meaning equivalence with the English survey question material, not “word-for-word parallelism.”³³ One of the BRFSS questions asked the participant if they undergone either a “colonoscopy” or a “sigmoidoscopy.” Because ASL lacks specific signs that mean “colonoscopy” or “sigmoidoscopy,” the TWG focused on the concept involving insertion of a scope into the rectum, but did not differentiate in their sign selection.³³ This avoided finger spelling the procedure’s name, which could jeopardize the cognitive recognition of the medical terminology.

Medical researchers involved with deafness-related research frequently focus on eliminating deafness through the use of medical technologies and genetic engineering, despite the increasing recognition of the importance of cultural and genetic diversity¹² and the apprehension of Deaf individuals who fear genetic engineering and cochlear implantation techniques will diminish deafness.^37,38

The cultural and community threat is not a new experience. Deaf individuals have historically experienced negative effects from the medical community’s efforts to correct deafness, particularly the practice of eugenics and sterilization of Deaf individuals in the late nineteenth century and the early twentieth centuries (e.g., Nazi Germany). Even today, there are government bills in Europe and Australia that interpret deafness as a defective condition, amenable to genetic screening, elimination, or correction.³⁷

To address this distrust, the NCDHR worked closely with the DHCC to reassure and demonstrate to the Deaf community that the research focus was on the acquisition of scientific knowledge to improve Deaf people’s health, not on the elimination of deafness. The hiring of Deaf researchers and staff, and cross-cultural education of the hearing research team also helped to alleviate some of the mistrust. The close-knit Deaf community relies on a strong network of peer information exchange to learn about a variety of topics. One Deaf individual obtaining inaccurate information about a research project can negatively affect the community’s perspective on the project.³⁹ The use of Facebook, Twitter, ASL films on research processes,^40–43 and persistent community involvement by NCDHR helped to establish a sense of “connectedness” with the Deaf community and helped to increase trust and transparency with NCDHR.

CBPR allows the Deaf community to voice their desires and concerns in a nonthreatening research environment, while selecting the research agenda. To provide a safe and accessible research environment, Deaf community members were hired to teach ASL to the non-fluent hearing researchers and staff members. Each week, these hearing individuals met one-on-one with a Deaf ASL teacher to learn ASL and about the Deaf culture. The use of ASL interpreters also provided greater communication access between signers and non-signers.

Recruitment with challenging-to-reach populations, including the Deaf community, requires substantial effort and resources. Deaf individuals often are socially marginalized owing to language and communication barriers, poverty, and low educational achievement.^24,44 Traditional recruitment efforts often fail to engage the Deaf community, partly owing to many researchers’ reliance on non-culturally or -linguistically appropriate recruitment strategies (e.g., random digit dialing or radio advertisements).

To overcome recruitment barriers, the NCDHR research team worked diligently to develop strong relationships with a variety of Deaf community and service organizations. Gatekeepers were recognized as key recruiters because they generate an element of trust for many community members and provide valuable insight on the feasibility and relevancy of a research project.

Recruitment with challenging-to-reach populations can be a trial and error process. In the early phases of the DHS recruitment, strategies focused on providing information on the DHS to the partnering organizations, open house presentations at the research center, and the use of web, email, and video blog-based flyers. Community members who were enthusiastic advocates of the mission and goals of the research project became the most effective recruiters in the community.

Many recruited individuals were well known by many of the research members, resulting in convenience sampling biases. Recruitment strategies needed to be improvised to achieve a more representative sample, even though DHS recruitment goals were attained. To avoid sampling biases with many challenging-to-reach populations, respondent-driven sampling may be the ideal approach to recruiting a representative sample.⁴⁵ To achieve representative samples, current research recruitment efforts at NCDHR now plan or use respondent-driven sampling methods.

Maintaining and building relationships with partners and community leaders requires significant commitments of time and resources on behalf of the research team. Research staff and faculty members should be enthusiastic participants in community and organizational events. The NCDHR research team maintained high visibility at community events, helping to understand the community’s health needs and members’ perspectives toward research and health care. This facilitated greater trust, visibility, and rapport with other community members to be able to share opinions, ideas, and even concerns with the NCDHR.

Research capacity in underserved and underrepresented community projects can be difficult to sustain without the involvement of community members in project leadership and development roles. Many linguistic minorities and hard-to-reach communities are poorly represented among research teams, especially at the research faculty level.⁴⁶ Educational pipelines are becoming an important way to increase interested and diverse applicants into health research careers.

Few, if any, such pipelines previously existed for Deaf students in the healthcare or research field. Each summer, several Deaf and hard-of-hearing students are given the opportunity to develop their research skills and gain knowledge in community health through the NCDHR internship program. In addition, an NIH-supported fellowship program at the UR offers opportunities for Deaf post-doctoral candidates to engage in community health research related to cardiovascular disease. Two current Deaf junior faculty members were trained through this pathway. To increase interest on a national level, the NCDHR collaborates with partnering organizations in a Task Force for Health Care Careers for the Deaf and Hard of Hearing Community to provide ideas on how to increase diversity in the health care workforce.

Sustainability, in light of funding and budget restraints at the federal and state levels, has been threatened for a number of community health projects. The NCDHR has tried to increase sustainability by diversifying research grants. During the first grant cycle, the NCDHR received funds solely from the CDC. Currently, the NCDHR is a center in which resources are being shared through multiple research projects (Table 3). Diversity in funding helps to not only expand community partnerships, but also better serve the community’s needs and priorities.