Conducting low-cost community-engaged health research with Deaf American Sign Language users

Abstract

Background. Deaf American Sign Language (ASL) users represent an understudied linguistic/cultural minority group experiencing social disenfranchisement leading to a myriad of health inequities. Community-engaged and community-based participatory research is a best practice when working with Deaf ASL-users; yet, prior research using large funding mechanisms from governmental organizations is mostly unattainable by community organizations. The purpose of this study was to conduct a pilot survey assessing the feasibility of community-engagement methods to administer a low cost, community-oriented, accessible health survey among Deaf ASL-users in Florida. Methods. We established a community advisory workgroup of representatives from major Deaf-serving organizations and higher density localities. The community-academic partnership developed an accessible health survey available in ASL and English. The pilot survey was administered over a three-month period in summer 2018 using convenience sampling strategies including in-person recruitment at community events, and advertisements through Facebook and community e-mail lists. Results. Our recruitment strategy yielded 92 eligible, and diverse, respondents from across the state of Florida. We provide lessons learned from our strategy including considerations for including community members as translation reviewers; recruiting participants across a large geographic area with limited time; and, informed consent strategies. Conclusions. Limited resource environments are pervasive in public health practice and in the communities we serve. Using data from this pilot survey, we identified recommendations for future study methodology to improve community-orientation and participant recruitment among this priority population.

Publication
PsyArXiv

What is this paper about?

This paper describes our process of working with the Deaf community in Florida to develop a health survey in American Sign Language.

How does this paper improve public health?

There is a lack of research on the health of Deaf people in the United States. Most of the existing research is funded by large grants. This project informed us how to conduct health research with the Deaf community in Florida without large grants. This included (1) how to work with non-profit organizations, and (2) how to recruit Deaf people in research.

How was the community involved?

Members of the Florida Deaf community helped make decisions about this project. We had a team of Deaf community members, Deaf researchers, and non-Deaf researchers. Deaf community members helped us decide survey questions, translate the survey, recruit participants, and write manuscripts.

Disclosures

  • Is this paper peer reviewed? This paper is not peer reviewed. This paper is a pre-print, which is a research paper shared before peer review.

  • Who paid for this project? This project was paid for with personal funds by the primary author, Tyler G. James.

  • Are there any conflicts of interest? There are no conflicts of interest.

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