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1.
J Deaf Stud Deaf Educ ; 25(1): 115-125, 2020 01 03.
Article in English | MEDLINE | ID: mdl-31782774

ABSTRACT

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.


Subject(s)
Community Participation , Deafness/psychology , Informed Consent , Adult , Biomedical Research/ethics , Biomedical Research/methods , Community Participation/methods , Community Participation/psychology , Female , Focus Groups , Humans , Informed Consent/psychology , Male , Middle Aged , Patient Selection/ethics , Pilot Projects , Research Personnel/education
2.
Qual Health Res ; 28(11): 1813-1824, 2018 09.
Article in English | MEDLINE | ID: mdl-29890891

ABSTRACT

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.


Subject(s)
Community-Based Participatory Research/organization & administration , Persons With Hearing Impairments , Qualitative Research , Research Design , Cultural Competency , Health Literacy , Humans , Politics , Sign Language , Socioeconomic Factors , United States
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