Deaf Health Survey
Core Research Project (2004-2009): Determinants of Health Risk in the Deaf Population
NCDHR developed the Deaf Health Survey 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. We designed this sign language survey to be accessible to a broad segment of the population. The Deaf Health Survey allows us 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. We also developed generalizable measures and methods that can be used in research and health surveillance with Deaf populations in other locations. More...
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. American Journal of Preventive Medicine 41(1): 75-79. Abstract
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. American Journal of Public Health, 2011 Dec; 101(12):2235-8. Epub 2011 Oct 20. Abstract
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. Field Methods 2010; 22(4); 429-448. Abstract
Pollard RQ, Dean RK, O’Hearn A, Haynes SL. Adapting health education materials for deaf audiences. Rehabilitation Psychology 2009; 54(2): 232-238. Pub Med Citation
Presentations (chronological order):
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.
Mowl C, Sutter E, Barnett S (2011). 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 (March 22).
McKee M, Barnett S, Block N, and Pearson T. Impact of Communication on Emergency Department and Preventive Services Use Among Deaf American Sign Language Users. Presented at the Health Literacy Annual Research Conference, Bethesda, MD; 2010 October 26. Poster Abstract (p. 12)
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. Presented at the Association for Research in Vision and Ophthalmology, Fort Lauderdale, FL; 2010 May 4. Abstract
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. Presented at the American Public Health Association 137th Annual Meeting, Philadelphia, PA; 2009 Nov 7-11. Abstract
Pollard RQ, Schlehofer S, Sutter E. Incidence and consequences of intimate partner violence affecting deaf individuals. Presented at the American Public Health Association 137th Annual Meeting, Philadelphia, PA; 2009 Nov 7-11. Abstract
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. Presented at the 8th Early Hearing Detection and Intervention Conference, Addison, TX, 2009 Mar 9-10. Slides
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.
Barnett S, Schlehofer D, David T, Sutter E, on behalf of NCDHR. Identifying and addressing disparities through community-based participatory research with deaf people. 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. Presented at the Community Board Annual Retreat, University of Rochester Medical Center, Center for Community Health, Rochester NY; 2009 Feb 6. Handout
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. Presented at NIH Summit: The Science of Eliminating Health Disparities, National Harbor, MD; 2008 Dec 16-17. Poster
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. Presented at the 136th American Public Health Association Annual Meeting, San Diego, CA; 2008 Oct 25-29. Abstract Poster
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. Presented at the CDC Prevention Research Centers Annual Program Meeting, Atlanta, GA; 2008 Mar 26-28; Abstract (on page 26). Also presented at “Summer in the City” seminar series, University of Rochester Medical Center, Center for Community Health, Rochester NY; 2008 June 17. Slides
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. Presented at the Technology and Deaf Education International Symposium, National Technical Institute for the Deaf, Rochester NY; 2008 June 24. Abstract
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. Presented at Imagine RIT: Innovation and Creativity Festival, Rochester Institute of Technology, Rochester NY; 2008 May 3. Poster
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. Presented at the CDC 25th Annual Behavioral Risk Factor Surveillance System (BRFSS) Conference, Orlando, FL; 2008 Mar 18. Slides
Oyzon E, Delaney M, Samar V, O’Hearn A, Lalley P. The Health Behavior Survey-Sign Language Version (HBS-SLV): User interface. Deaf Health Poster Session, NTID Brown Bag Research Series, Rochester NY; 2007 Feb 19. Poster
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
The Deaf Health Survey 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 NCDHR Deaf Health Survey, we:
- 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. We designed the survey to be accessible to a broad segment of the population, and tested the survey design with members of the deaf community. We adjusted the survey design based on feedback from cognitive testing. The final NCDHR Deaf Health Survey has 98 items.
To date, over 500 people have taken the Deaf Health Survey, including 339 from the Rochester area. The majority of DHS 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.
NCDHR wanted a second sample of deaf adults to assess the DHS. We surveyed adults attending the National Technical Institute for the Deaf (NTID) 40th Reunion celebration. Compared to Rochester DHS respondents, fewer reunion non-Rochester DHS participants reported graduate degrees but the median income was higher. Important health issues were consistent across the two DHS 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 groups, 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.
Last updated: 05/22/2012