One of the most understudied health disparity populations in the United States is the Deaf community-a sociolinguistic minority group of at least 500,000 individuals who communicate using American Sign Language. Research within this population is lacking, in part, due to researchers' use of methodologies that are inaccessible to Deaf sign language users. Traditional qualitative methods were developed to collect and analyze participants' spoken language. There is, therefore, a paradigm shift that must occur to move from an auditory data schema to one that prioritizes the collection and analysis of visual data. To effectively navigate this shift when working with Deaf sign language users, there are unique linguistic and sociopolitical considerations that should be taken into account. The current article explores these considerations and outlines an emerging method of conducting qualitative analysis that, we argue, has the potential to enhance qualitative researchers' work regardless of the population of focus.
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.
Objectives: One of the most underrepresented public health populations is the U.S. Deaf community-a minority group of 500,000+ individuals who communicate using American Sign Language (ASL). Research on Deaf health outcomes is significantly lacking due to inaccessible research procedures and mistrust of researchers that stems from historical mistreatment of Deaf people (i.e., Audism). Methods: Following the Truth and Reconciliation Model, we hosted three Deaf community forums between October and November 2016 across New England. We invited attendees to share their experiences in the research world and make recommendations about how researchers can better include Deaf people in their studies. A select group of hearing researchers served as representatives of the research community and to issue a formal apology on behalf of this community. Results: Forum attendees (n = 22; 5% racial/ethnic minority; 59% female) emphasized the following themes: Research conducted within general population samples is not an activity in which Deaf people can or will be included; a general mistrust of hearing people, including hearing researchers; researchers' frequent failure to communicate study results back to the Deaf community or the community-at-large; and a tendency of researchers to directly benefit from data provided by Deaf participants, without making any subsequent efforts to return to the community to give back or provide useful intervention. Conclusions: Many injustices and forms of mistreatment are still ongoing; therefore, we recognize that our team's efforts to foster an open dialogue between the research community and the Deaf community must be an ongoing, iterative practice. Public Significance StatementDeaf sign language users are often hesitant to participate in public health studies due to mistrust of researchers. The Truth and Reconciliation Model has been used to improve relationships between researchers and members of sociolinguistic minority groups. We used this model as part of our initial research activities to begin to develop trust between our research team and the local Deaf community.
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