Understanding Health Needs of the Deaf Community: New York State Deaf Health Survey

Surveys are commonly used to understand the health needs of communities, but are often conducted by telephone, rendering them inaccessible or inappropriate for Deaf people. The Rochester Prevention Research Center (RPRC) and the National Center for Deaf Health Research (NCDHR) have just launched the third round of their Deaf Health Survey, a culturally and linguistically accessible health survey that was designed by Deaf people for Deaf people.

Deaf communities face unique challenges in managing their health and accessing health care due to language and cultural barriers. This group is often overlooked, excluded, and underserved in health care, health research, and public health programs, and phone-based health surveys are a prime example of this.

RPRC/NCDHR, which are part of the University of Rochester Clinical and Translational Science Institute, have developed and refined new techniques to translate English into American Sign Language (ASL) to conduct video-based surveys with Deaf communities. Participants cancan choose between video in ASL or English-based sign language, cancan turn captioning on or off, and can choose from a diverse array of sign language models.

The survey, which was previously released in 2008 and 2013 to the Rochester Deaf community, will be available across New York State for the first time this year. The goal is to collect public health data from Deaf communities throughout the state and develop relationships between these communities and public health officials. The data will help identify the communities’ health priorities, show the need for services, and obtain funding for associated services and research projects.

“The NCDHR was able to successfully obtain funding to further research on three community-chosen health priorities: obesity, suicide risk, and intimate partner violence,” said Kelly Matthews, research coordinator for NCDHR. “The New York State Deaf Health Survey is the first opportunity for Deaf communities outside of Rochester to participate in culturally (Deaf) and linguistically (ASL) accessible public health surveillance. We are excited to strengthen our Deaf community connections throughout the State.”

The data will also be presented to the NYS Department of Health for the first time, showing the health and well-being of Deaf communities throughout the state and what they need. Results and next steps will be shared with the communities who participated in the survey.

Members of the team heading up the survey include Earl Allen, project assistant; Kelly Matthews, research coordinator; Jenna Stewardson, research coordinator; and Christina Whetsel, project assistant.

For questions or comments, call 585-286-2776 (video phone) or email NCDHR.

Michael Hazard | 6/1/2018

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