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Deaf Health Survey 2008:
Determinants of Health Risk in the Deaf Population
The Deaf Health Survey 2008 was the first core research projects occurring in RPRC:NCDHR. RPRC:NCDHR developed the Deaf Health Survey 2008 to assess the levels and determinants of risk behaviors and disease in the Deaf population. The computer-based survey interface was developed to work on a touch-screen computer kiosk. RPRC:NCDHR designed this sign language survey to be accessible to a broad segment of the population. The Deaf Health Survey 2008 allows RPRC:NCDHR to establish comparisons with local and national surveillance studies, and with Healthy People 2010 objectives, in order to better define health and health disparities in the Rochester Deaf population. RPRC:NCDHR also developed generalizable measures and methods that can be used in research and health surveillance with Deaf populations in other locations.
The Deaf Health Survey is being administered now. Click here for more information on the DHS 2013.
The Deaf Health Survey 2008 included questions from other national surveys such as the Behavioral Risk Factor Surveillance System (BRFSS), Youth Risk Behavior Survey(YRBS), and the National College Health Assessment(NCHA). These surveillance questions are now accessible to various populations of Deaf people such as those who use American Sign Language (ASL) and those who use English as a Second Language.
To create the RPRC:NCDHR Deaf Health Survey, RPRC:NCDHR:
- Translated and back-translated the English BRFSS items into sign language
- Adapted the English for captions
- Added deaf-specific items
- Worked with community partners to prioritize survey topics
- Designed a computer-based survey
- Developed a survey dictionary for some medical terms
- Conducted in-depth individual cognitive interviews to evaluate the survey
- Developed and assessed a variety of recruitment strategies
The computer-based survey interface was developed to work on a touch-screen computer kiosk. RPRC:NCDHR designed the survey to be accessible to a broad segment of the population, and tested the survey design with members of the Deaf community. RPRC:NCDHR adjusted the survey design based on feedback from cognitive testing. The final RPRC:NCDHR Deaf Health Survey has 98 items.
To date, over 500 people have taken the Deaf Health Survey 2008 (DHS 2008), including 339 from the Rochester area. The majority of DHS 2008 participants were deaf since birth or early childhood. Deaf adults reported low rates of current smoking, and higher rates of overweight/obesity, recent suicide attempts and experiences of interpersonal violence.
RPRC:NCDHR wanted a second sample of deaf adults to assess the DHS 2008. We surveyed adults attending the National Technical Institute for the Deaf (NTID) 40th Reunion celebration. Compared to Rochester Deaf Health Survey 2008 respondents, fewer reunion non-Rochester Deaf Health Survey participants reported graduate degrees but the median income was higher. Important health issues were consistent across the two Deaf Health Survey 2008 populations (low current smoking rates, high overweight/obesity and high rates of partner violence). These findings also showed that health disparities exist in deaf groups with high educational attainment.
Adults deaf since birth/early childhood appear to be at increased risk for several health conditions. Accessible surveys can identify health risks amenable to intervention, including interventions with families with a deaf child. Deaf people, as members of medically underserved and understudied linguistic and cultural minority group, can now be successfully included in health data collection (and eventually in health promotion research) through the use of computer-based surveys in sign language, their primary language.
McKee M, McKee K, Winters P, Sutter E, Pearson T. Higher education but not higher income is protective for cardiovascular risk in Deaf American Sign Language users (Article) . Disability and Health Journal 2014;7(1):49-55.
Pollard R, Sutter E, Cerulli.Intimate Partner Violence Reported by Two Samples of Deaf Adults via a Computerized American Sign Language Survey. (Abstract) Journal of Interpersonal Violence 2014:29(5), 948-965.
Samar V, Barnett S, Oyzon E, Mowl C, Sutter E. Modality-Independent Survey Tool (MIST): Imagine the Potential. NTID Research Bulletin Winter 2012; 15(1):1-4.
McKee MM, Barnett S, Block RC, Pearson TA. (2011). Impact of communication on preventive services among deaf American Sign Language users (Abstract). American Journal of Preventive Medicine 41(1): 75-79.
Barnett S, Klein JD, Pollard RQ, Samar VJ, Schlehofer D, Starr MJ, Sutter E, Yang H, Pearson TA. (2011). Community participatory research to identify health inequities with deaf sign language users (Abstract). American Journal of Public Health, 2011 Dec; 101(12):2235-8. Epub 2011 Oct 20. , ASL Video(please scroll to the bottom of the page for the video)
Graybill P, Aggas J, Dean RK, Demers S, Finigan E, Pollard RQ. (2010). A community participatory approach to adapting survey items for Deaf individuals and American Sign Language (Abstract). Field Methods 2010; 22(4); 429-448.
Pollard RQ, Dean RK, O’Hearn A, Haynes SL. Adapting health education materials for deaf audiences. (Pub Med Citation) Rehabilitation Psychology 2009; 54(2): 232-238.
Barnett S, Chin N, Kelstone K, Hackbarth J . Community participatory research with deaf sign language users to identify health inequities (Abstract). Presented at the APHA Film Festival, APHA 141th Annual Meeting, Boston, MA; 2013, Nov 5.
Barnett S, Dozier A, Adekunle H, Bennett N, Pearson TA. Community engagement and collaboration among federally funded programs: Working across the CTSA, Prevention Research Center, and Community Transformation Grant. Presented at the Science of Community Engaged Research: Future Directions 6th Annual Clinical and Translational Science Award (CTSA) National Conference, Bethesda, MD; 2013 Aug 22-23.
McKee M, McKee K, Sutter E, and Pearson TA. Is higher educational attainment or higher income protective for cardiovascular risk in deaf American sign language (ASL) users? (Abstract). Presented at the American Heart Association, Epidemiology and Prevention 2012 Scientific Sessions, San Diego, CA; 2012.
Barnett S, Mowl C, O'Hearn A, Samar V, and Sutter E. Violence & Suicide attempts: Results of a survey of adults deaf since birth or early childhood. Presented at the 11h Annual EHDI Meeting, St. Louis, Missouri; 2012, March 4.
Ludwig C, Starr M. Eliminating Health Disparities in Deaf Population through Community-Based Participatory Research. [keynote address]. Presented at the National Symposium on Healthcare Interpreting. 2012.
Barnett S, Winters P. Mortality and Self-Rated Health of US Adults Deaf Since Birth or Early Childhood: Findings From National Data. Presented at the International Society of Quality of Life Research, Denver, CO; 2011.
Reid JT, Starr M, Barnett S. Adapting public health interventions for use with a new community: Experiences working with deaf adult sign language users. Presented at the Prevention Research Centers Annual Conference; 2011, April.
Mowl C, Sutter E, Barnett S. Adverse experiences and adult health conditions: Findings from a sign language survey with deaf adults. CDC 28th Annual Behavioral Risk Factor Surveillance System (BRFSS) Conference, Atlanta; 2011 (March 22).
McKee M, Barnett S, Block R, and Pearson T. Impact of Communication on Emergency Department and Preventive Services Use Among Deaf American Sign Language Users [Poster Abstract (p. 12)]. Presented at the Health Literacy Annual Research Conference, Bethesda, MD; 2010 October 26.
Starr M. We Will Not Be Ignored! Working With the Deaf Community in Public Health Research (Video). Presented at the National Association of the Deaf 50th Biennial Conference, Philadelphia, PA; 2010 July 6-10.
Samar V. An Interactive Computerized Sign Language Health Survey for Deaf Adults: Interface Design and Functionality. Presented at the Technology and Deaf Education Conference: Exploring Instructional and Access Technologies at the National Technical Institute of the Deaf at the Rochester Institute of Technology, Rochester, NY; 2010 June 21-23.
Ramchandran R, Sutter E, Pollard RQ, Barnett S, Sterns G. Deaf adult self-reported quality of vision and use of eye care (Abstract). Presented at the Association for Research in Vision and Ophthalmology, Fort Lauderdale, FL; 2010 May 4.
Schlehofer D, Ross D, Sutter E. Identifying health disparities for deaf women: The Deaf Health Survey in American Sign Language. Presented at Women's Health 2010: The 18th Annual Congress, Washington DC; 2010 Mar 26-28.
Barnett S, Sutter E, Pearson TA, on behalf of NCDHR. Adapting the BRFSS to survey deaf sign language users: Experience and findings. Presented at the CDC 27th Annual Behavioral Risk Factor Surveillance System (BRFSS) Conference, San Diego, CA; 2010 Mar 20-24.
Samar V, Oyzon E, Barnett S, Schlehofer D, Finigan E, Lalley P. Interactive computerized sign language health survey for deaf adults: Interface design and functionality (Abstract). Presented at the American Public Health Association 137th Annual Meeting, Philadelphia, PA; 2009 Nov 7-11.
Pollard RQ, Schlehofer S, Sutter E. Incidence and consequences of intimate partner violence affecting deaf individuals (Abstract). Presented at the American Public Health Association 137th Annual Meeting, Philadelphia, PA; 2009 Nov 7-11.
Schlehofer S, Hurwitz V, Mowl M, Haynes S. Lessons learned about interpersonal violence: Importance of collaboration. Presented at Deaf Women United Conference, Portland, OR; 2009 July 22-26.
Schlehofer D, Barnett S, Sutter E, on behalf of NCDHR. Surveying adults deaf since childhood: Identifying and addressing disparities through community-based participatory research (Slides). Presented at the 8th Early Hearing Detection and Intervention Conference, Addison, TX, 2009 Mar 9-10.
Barnett S, Schlehofer D, Sutter E, on behalf of NCDHR. Health outcomes for deaf children: Results of a survey of deaf adults. Presented at the 8th Early Hearing Detection and Intervention Conference, Addison, TX, 2009 Mar 9-10.
David T, Grunbaum J, Martinez S, and Morales-Campos D. Training the Next Generation: The Prevention Research Center's and Association of Schools of Public Health Minority Fellowship Program [Abstract (p.44)] Presented at the 20th National Conference on Chronic Disease Prevention and Control, Centers for Disease Control, National Harbor, MD; 2009 Feb. 23-25.
Barnett S, Schlehofer D, David T, Sutter E, on behalf of NCDHR. Identifying and addressing disparities through community-based participatory research with deaf people [Poster Presentation (p. 98)] Presented at the 20th National Conference on Chronic Disease Prevention and Control, Centers for Disease Control, National Harbor, MD; 2009 Feb. 23-25.
Barnett S, Schlehofer D. The Rochester Deaf Health Survey (Handout) Presented at the Community Board Annual Retreat, University of Rochester Medical Center, Center for Community Health, Rochester NY; 2009 Feb. 6.
Barnett S, David T, McKee M, Pearson TA, on behalf of NCDHR. Identifying and addressing disparities through community-based participatory research with deaf people: Experiences of a Prevention Research Center (Poster) Presented at NIH Summit: The Science of Eliminating Health Disparities, National Harbor, MD; 2008 Dec 16-17.
Barnett S, McKee M, Samar VJ, Thompson H, on behalf of the NCDHR Research Committee, Deaf Health Community Committee, Translation Working Groups, Filming Teams, & Interface Development Teams. Adapting the Behavioral Risk Factor Surveillance System (BRFSS) to survey deaf sign language users (Abstract). Presented at the 136th American Public Health Association Annual Meeting, San Diego, CA; 2008 Oct 25-29. To see the Poster from this presentation, click here.
Aggas J, Barnett S, David T, Graybill P, Kelstone K, Lomeo C, Sullivan JP, Quiroga A, Pearson TA. Working collaboratively for the first community-based comprehensive health survey of a U.S. Deaf community (Slides). Presented at the CDC Prevention Research Centers Annual Program Meeting, Atlanta, GA; 2008 Mar 26-28;. Also presented at “Summer in the City” seminar series, University of Rochester Medical Center, Center for Community Health, Rochester NY; 2008 June 17.
Samar VJ, Barnett S, Oyzon E, Thompson H, NCDHR Research Committee, Deaf Health Community Committee, Delaney M, ITX Corp. The National Center for Deaf Health Research health survey: Demonstration of a linguistically accessible health surveillance instrument for deaf communities(Abstract). Presented at the Technology and Deaf Education International Symposium, National Technical Institute for the Deaf, Rochester NY; 2008 June 24.
Barnett S. Update on a sign language health survey. Presented at the Family Medicine Research Seminar Series, Family Medicine Research Programs, University of Rochester, Rochester NY; 2008 June 13.
Samar VJ, Barnett S, Oyzon E, Thompson H, NCDHR Research Committee, Deaf Health Community Committee, Delaney M, ITX Corp. National Center for Deaf Health Research (NCDHR) Health Behavior Survey: Using technology for health surveillance and health promotion in the Deaf community (Poster). Presented at Imagine RIT: Innovation and Creativity Festival, Rochester Institute of Technology, Rochester NY; 2008 May 3.
Schlehofer D. The goals of the Deaf Health Survey. Presented at Deaf Women Studies Class, National Technical Institute for the Deaf at the Rochester Institute of Technology, Rochester, NY; 2008 Apr 24.
Barnett S. Adapting the BRFSS to survey deaf sign language users (Slides). Presented at the CDC 25th Annual Behavioral Risk Factor Surveillance System (BRFSS) Conference, Orlando, FL; 2008 Mar 18.
Oyzon E, Delaney M, Samar V, O’Hearn A, Lalley P. The Health Behavior Survey-Sign Language Version (HBS-SLV): User interface (Poster). Deaf Health Poster Session, NTID Brown Bag Research Series, Rochester NY; 2007 Feb. 19.
BRFSS: Behavioral Risk Factor Surveillance System: www.cdc.gov/brfss
YRBS: Youth Risk Behavior Survey: www.cdc.gov/healthyyouth/yrbs
NCHA: National College Health Assessment: www.achancha.org
Focus Group Meetings
Seeking Deaf persons age 21-40 interested in participating in a one-time two hour focus group meeting in Rochester!
The interviews are limited to Deaf people who are now living in the Rochester (NY) area. The focus group will be conducted in ASL. We need your feedback on developing Deaf Weight Wise (DWW) 2.0. We will be asking about healthy eating and physical activity. The purpose of the group is to continue to develop culturally and linguistically appropriate healthy lifestyle research programs for Deaf people. Each participant will receive $30 dollars cash.
(585) 568 6534 VP