Abstract
Deaf people who use American Sign Language (ASL) are medically underserved and often excluded from health research and surveillance. We used a community participatory approach to develop and administer an ASL-accessible health survey. We identified deaf community strengths (e.g., a low prevalence of current smokers) and 3 glaring health inequities: obesity, partner violence, and suicide. This collaborative work represents the first time a deaf community has used its own data to identify health priorities.
Deaf people who use American Sign Language (ASL) are medically underserved and often excluded from health research and public health surveillance.1,2 ASL is different from English3 and, as is the case with many of the world's languages,4 has no written form. Many ASL users have been deaf since birth or early childhood. Biological and social determinants of health suggest that communities of ASL users should be predisposed to health inequities.2
Rochester, New York, has a large population of deaf ASL users. The Rochester Prevention Research Center's National Center for Deaf Health Research (NCDHR) used a community participatory approach to develop and administer an ASL-accessible health survey to estimate deaf individuals' health status and health risk and to compare results with data from the local general population as a means of identifying health inequities.
METHODS
Deaf and hearing researchers and community members worked collaboratively to develop a linguistically and culturally appropriate survey based on the Behavioral Risk Factor Surveillance System (BRFSS).5 We worked with community members to prioritize health survey topics and developed items to measure important deaf-related demographic information (e.g., age at onset of deafness).6,7 We adapted existing English-language survey items through a process that included translation,8 back-translation, and in-depth individual cognitive interviews. A computer interface was used to present survey items in sign language (via video) and written English on a touch-screen kiosk. The NCDHR Deaf Health Survey contained 98 items.
We recruited deaf individuals through deaf community organizations, via e-mail and posters, and face-to-face during community events; 339 deaf adults from the Rochester metropolitan statistical area completed the survey over a period of 6 months in 2008. Results were compared with BRFSS data collected via random-digit dialing in the Rochester community in 2006.9 We used SAS version 9.2 survey procedures10 to adjust for possible biases introduced by telephone survey methodology. The Rochester deaf community contributed to interpretation of the survey findings and identified health inequities in need of future research and intervention.
RESULTS
Survey respondents were predominantly White and highly educated, and most had been deaf since birth or early childhood (Table 1). It is notable that many of the NCDHR Deaf Health Survey findings were similar to the 2006 Rochester telephone BRFSS results.
TABLE 1.
Demographic and Deaf-Related Characteristics: 2008 NCDHR Deaf Health Survey and 2006 Monroe County BRFSS, Rochester, NY
| NCDHR Deaf Health Survey (n = 339) | Monroe County BRFSS (n = 2546) | |
| Age, y | ||
| Mean (95% CI) | 46.4 (45.0, 47.8) | 46.3 (45.3, 47.3) |
| Range | 18–88 | 18–95 |
| Male, % (95% CI) | 45.5 (40.2, 50.9) | 47.6 (44.9, 50.3) |
| Race, % (95% CI) | ||
| White | 85.7 (81.8, 89.6) | 82.4 (80.4, 84.5) |
| African American | 4.4 (2.1, 6.7) | 12.2 (10.6, 13.9) |
| Asian/Pacific Islander | 2.5 (0.8, 4.3) | 2.5 (1.4, 3.6) |
| American Indian/Alaska Native | 1.3 (0.02, 2.5) | 0.6 (0.2, 1.0) |
| Other or multiple races | 6.0 (3.4, 8.7) | 2.2 (1.5, 2.9) |
| Hispanic % (95% CI) | 3.2 (1.2, 5.1) | 3.9 (2.9, 4.8) |
| Household income, $, % (95% CI) | ||
| < 20 000 | 28.2 (23.0, 33.4) | 19.2 (17.0, 21.5) |
| 20 000–35 000 | 23.4 (18.5, 28.3) | 15.1 (13.3, 16.9) |
| 35 000–75 000 | 35.7 (30.2, 41.3) | 35.9 (33.1, 38.7) |
| > 75 000 | 12.7 (8.9, 16.6) | 29.7 (27.1, 32.4) |
| Highest level of education, % (95% CI) | ||
| < high school | 5.1 (2.6, 7.5) | 7.1 (5.7, 8.5) |
| High school or equivalent | 12.7 (9.0, 16.4) | 26.4 (24.0, 28.8) |
| Some college/2-y degree | 34.1 (28.8, 39.3) | 24.4 (22.1, 26.8) |
| ≥college | 48.1 (42.5, 53.6) | 42.1 (39.5, 44.7) |
| Marital status, % (95% CI) | ||
| Married | 50.0 (44.5, 55.5) | 53.2 (50.5, 55.9) |
| Divorced | 15.2 (11.2, 19.2) | 9.2 (7.9, 10.4) |
| Widowed | 1.9 (0.4, 3.4) | 6.6 (5.6, 7.5) |
| Separated | 3.8 (1.7, 5.9) | 2.2 (1.6, 2.7) |
| Never married | 24.7 (19.9, 29.4) | 23.4 (20.7, 26.0) |
| Member of unmarried couple | 4.4 (2.1, 6.7) | 5.5 (4.2, 6.9) |
| Age at onset of deafness, y, % (95% CI) | ||
| Born deaf | 69.8 (64.6, 74.9) | … |
| < 1 | 8.4 (5.3, 11.5) | … |
| 1–3 | 10.0 (6.6, 13.3) | … |
| 4–10 | 4.8 (2.4, 7.2) | … |
| 11–18 | 1.0 (0.0, 2.0) | … |
| ≥ 19 | 1.3 (0.0, 2.5) | … |
| Don't know | 4.8 (2.4, 7.2) | … |
| Mother, father, or siblings are deaf, % (95% CI) | 31.9 (26.8, 37.1) | … |
Note. BRFSS = Behavioral Risk Factor Surveillance System; CI = confidence interval; NCDHR = National Center for Deaf Health Research. Percentages may not sum to 100 because of rounding. Ellipses indicate question not asked in Monroe County BRFSS survey.
The low prevalence of smoking observed (9.1%), less than half the smoking prevalence in the local general population (18.1%), is consistent with other reports7,11–13 (Table 2). The low smoking prevalence is consistent with our participants' high educational attainment but not their relatively low income (the median income of the local general population is $51 79914). Research designed to provide an understanding of smoking in the deaf community could inform smoking-related interventions with other groups.
TABLE 2.
Selected Findings: 2008 NCDHR Deaf Health Survey and 2006 Monroe County BRFSS, Rochester, NY
| NCDHR Deaf Health Survey, % (95% CI) | Monroe County BRFSS, % (95% CI) | |
| All participants | ||
| Current smoker | 9.1 (6.4, 12.9) | 18.1 (16.1, 20.2) |
| Weight classification by BMI | ||
| Neither overweight nor obese (≤ 24.9 kg/m2) | 31.7 (26.6, 36.8) | 38.8 (36.1, 41.5) |
| Overweight (25.0–29.9 kg/m2) | 34.2 (29.0, 39.3) | 34.6 (32.1, 37.1) |
| Obese (≥ 30.0 kg/m2) | 34.2 (29.0, 39.3) | 26.6 (24.2, 29.0) |
| Ever attempted suicide | 14.6 (10.7, 18.6) | … |
| Attempted suicide in past 12 mo | 2.2 (0.6, 3.9) | 0.4 (0.2, 0.7) |
| Participants younger than 65 ya | ||
| Intimate partner violence | ||
| Ever been emotionally abused | 27.5 (22.4, 33.1) | … |
| Emotionally abused in past 12 mo | 7.4 (4.8, 11.3) | … |
| Ever been physically abused | 21.0 (16.3, 25.8) | 13.9 (11.8, 16.0) |
| Physically abused in past 12 mo | 3.1 (1.1, 5.1) | 2.7 (1.7, 3.8) |
| Ever been forced to have sex | 20.8 (16.1, 25.6) | 5.8 (4.5, 7.0) |
| Forced to have sex in past 12 mo | 3.8 (1.6, 6.1) | 0.7 (0.1, 1.3) |
Note. BMI = body mass index; BRFSS = Behavioral Risk Factor Surveillance System; CI = confidence interval; NCDHR = National Center for Deaf Health Research. Percentages may not sum to 100 because of rounding. Ellipses indicate question not asked in Monroe County BRFSS survey.
The Monroe County BRFSS survey administered intimate partner violence items only to respondents younger than 65 years, so for comparison we used the same age limit for our deaf sample. For participants under age 65, NCDHR Deaf Health Survey n=308, and Monroe County BRFSS n=1906.
The prevalence of obesity among our respondents was higher than that in the local general population (Table 2). Research has shown that general population participants tend to overreport their height or underreport their weight (or both) in telephone surveys.15 It may be that similar reporting biases were not present among our deaf participants. Even so, the high prevalence of overweight and obesity warrants a culturally appropriate and accessible intervention.
The prevalence of past-year suicide attempts in our sample appeared to be higher than that observed in the 2006 Rochester telephone survey (Table 2). Although other researchers have reported an association between deafness and suicide risk,16 none of these studies involved a community-based sample.
We measured past-year and lifetime experiences of partner violence (Table 2). One review reports that deaf children are at high risk for sexual abuse.17 Childhood trauma is associated with adult health consequences,18 including interpersonal violence, suicide attempts, and obesity, outcomes that are consistent with our survey findings.
DISCUSSION
Our community participatory approach successfully assessed health status and identified health risks in a community-wide sample of deaf individuals. This work is an important step toward the inclusion of deaf ASL users in population health surveillance and health promotion programs designed to address health priorities. Our research builds on previous research that used sign language interview surveys with deaf patients,19 sign language interview surveys,11,19 and topic-focused computer-based sign language surveys.12,20–23 We advanced this research through our community participatory approach and by using an accessible, standardized, self-administered computer-based survey to measure a broad range of health topics in a community-based sample and setting.
The limitations of our study underscore the challenges of conducting deaf health surveys. We did not have reliable measures of the size or demographics of the Rochester or US population of deaf adult ASL users.24 Although the fact that our Rochester sample was predominantly White is consistent with national data,6,25,26 our sample's high educational attainment is not typical of the US deaf community.6 Our findings probably underestimate the magnitude of health disparities experienced by other populations of deaf ASL users.
The Healthy People 2020 goal to promote health among people with disabilities requires accessible data collection.27 It is now possible, through surveys such as the one described here, to include deaf ASL users in public health surveillance programs.
Acknowledgments
This research was supported by cooperative agreements U48 DP001910-01 and U48 DP000031 from the US Centers for Disease Control and Prevention (CDC). Steven Barnett is supported by grant K08 HS15700 from the US Agency for Healthcare Research and Quality.
The contents of this article have been summarized in an ASL video (appendix available as a supplement to the online version of this article at http://www.ajph.org).
The Research Committee and the Deaf Health Community Committee of the Rochester Prevention Research Center's National Center for Deaf Health Research contributed to the Deaf Health Survey's development and performance and to the interpretation of its findings.
We are grateful to the Deaf Health Community Committee for its assistance with and support of the Deaf Health Survey. We also thank Julia Aggas, Tamala David, Robyn Dean, Susan Demers-McLetchie, Elizabeth Finigan, Michael McKee, Amanda O'Hearn, and Anne Steider for their contributions and collaboration throughout the entire survey development process. Finally, we thank our community partners, including the National Technical Institute for the Deaf, the Monroe County Department of Public Health, the Rochester Recreation Club of the Deaf, and the Rochester School for the Deaf.
Note. The contents of this article are solely the responsibility of the authors and do not necessarily represent the official views of the CDC.
Human Participant Protection
This study was approved by the institutional review boards of the University of Rochester and the Rochester Institute of Technology. Informed consent was obtained from all participants via computer-based video in American Sign Language with written English.
References
- 1.Barnett S, Franks P. Telephone ownership and deaf people: implications for telephone surveys. Am J Public Health. 1999;89(11):1754–1756. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 2.Barnett S, McKee M, Smith S, et al. Deaf sign language users, health inequities, and public health: opportunity for social justice. Prev Chronic Dis. 2011;8(2):A45. [PMC free article] [PubMed] [Google Scholar]
- 3.Barnett S. Clinical and cultural issues in caring for deaf people. Fam Med. 1999;31(1):17–22. [PubMed] [Google Scholar]
- 4.Schultz T, Kirchhoff K. Multilingual Speech Processing. Burlington, MA: Elsevier Academic Press; 2006. [Google Scholar]
- 5.Behavioral Risk Factor Surveillance System Survey Questionnaire—2006. Atlanta, GA: Centers for Disease Control and Prevention; 2006. [Google Scholar]
- 6.Barnett S, Franks P. Healthcare utilization and adults who are deaf: relationship with age at onset of deafness. Health Serv Res. 2002;37(1):105–120. [PubMed] [Google Scholar]
- 7.Barnett S, Franks P. Smoking and deaf adults: associations with age at onset of deafness. Am Ann Deaf. 1999;144(1):44–50. [DOI] [PubMed] [Google Scholar]
- 8.Graybill P, Aggas J, Dean R, et al. A community participatory approach to adapting survey items for deaf individuals and American Sign Language. Field Methods. 2010;22(4):429–448. [Google Scholar]
- 9.Monroe County Dept of Public Health. Monroe County Adult Health Survey Report 2006. Available at: http://www.monroecounty.gov/File/Health/2006%20ADULT%20HEALTH%20SURVEY.pdf. Accessed July 15, 2011.
- 10.SAS/STAT 9.2 User's Guide. 2nd edCary, NC: SAS Institute Inc.; 2009. [Google Scholar]
- 11.Dye M, Kyle J. Deaf People in the Community: Health and Disability. Bristol, England: Deaf Studies Trust; 2001. [Google Scholar]
- 12.Berman BA, Bernaards C, Eckhardt EA, et al. Is tobacco use a problem among deaf college students? Am Ann Deaf. 2006;151(4):441–451. [DOI] [PubMed] [Google Scholar]
- 13.Margellos-Anast H, Hedding T, Miller L. Improving Access to Health and Mental Health for Chicago's Deaf Community: A Survey of Deaf Adults. Chicago, IL: Sinai Health System and Advocate Health Care; 2004. [Google Scholar]
- 14.US Census Bureau. State and county quick facts: Monroe County, New York. Available at: http://quickfacts.census.gov/qfd/states/36/36055.html. Accessed July 15, 2011.
- 15.Bowlin SJ, Morrill BD, Nafziger AN, et al. Validity of cardiovascular disease risk factors assessed by telephone survey: the Behavioral Risk Factor Survey. J Clin Epidemiol. 1993;46(6):561–571. [DOI] [PubMed] [Google Scholar]
- 16.Turner O, Windfuhr K, Kapur N. Suicide in deaf populations: a literature review. Ann Gen Psychiatry. 2007;6:26. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 17.Sullivan PM, Vernon M, Scanlon JH. Sexual abuse of deaf youth. Am Ann Deaf. 1987;132(4):256–262. [DOI] [PubMed] [Google Scholar]
- 18.Felitti V, Anda R, Nordenberg D, et al. Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults: the Adverse Childhood Experiences (ACE) Study. Am J Prev Med. 1998;14(4):245–258. [DOI] [PubMed] [Google Scholar]
- 19.Margellos-Anast H, Estarziau M, Kaufman G. Cardiovascular disease knowledge among culturally deaf patients in Chicago. Prev Med. 2006;42(3):235–239. [DOI] [PubMed] [Google Scholar]
- 20.Berman BA, Eckhardt EA, Kleiger HB, et al. Developing a tobacco survey for deaf youth. Am Ann Deaf. 2000;145(3):245–255. [DOI] [PubMed] [Google Scholar]
- 21.Lipton DS, Goldstein MF. Measuring substance abuse among the deaf. J Drug Issues. 1997;27(4):733–754. [Google Scholar]
- 22.Steinberg AG, Lipton DS, Eckhardt EA, et al. The Diagnostic Interview Schedule for deaf patients on interactive video: a preliminary investigation. Am J Psychiatry. 1998;155(11):1603–1604. [DOI] [PubMed] [Google Scholar]
- 23.Fellinger J, Holzinger D, Dobner U, et al. Mental distress and quality of life in a deaf population. Soc Psychiatry Psychiatr Epidemiol. 2005;40(9):737–742. [DOI] [PubMed] [Google Scholar]
- 24.Mitchell R, Young T, Bachleda B, et al. How many people use ASL in the United States?: Why estimates need updating. Sign Lang Stud. 2006;6(3):306–335. [Google Scholar]
- 25.Agrawal Y, Platz EA, Niparko JK. Prevalence of hearing loss and differences by demographic characteristics among US adults: data from the National Health and Nutrition Examination Survey, 1999–2004. Arch Intern Med. 2008;168(14):1522–1530. [DOI] [PubMed] [Google Scholar]
- 26.Schoenborn CA, Heyman K. Health disparities among adults with hearing loss: United States, 2000–2006. Available at: http://www.cdc.gov/nchs/data/hestat/hearing00-06/hearing00-06.pdf. Accessed July 15, 2011.
- 27.US Dept of Health and Human Services. Healthy People 2020: disability and health. Available at: http://healthypeople.gov/2020/topicsobjectives2020/overview.aspx?topicid=9. Accessed July 15, 2011.