Friday, December 15, 2006

Reinventing HIV/AIDS public health campaigns for the Deaf community: Addressing the role of barriers and stigmatization – Wendy Trafton

A paper by Public Health Masters Student Wendy Trafton. Also available at: http://sb721.blogspot.com/2006/12/reinventing-hivaids-public-health.html

For more than 20 years, public health practitioners have developed campaigns to educate Americans about HIV/AIDS in an effort to prevent the spread of the disease. In January 2003, CBS Corporation, Viacom, and the Henry J. Kaiser Family Foundation launched a campaign entitled the “KNOW HIV/AIDS” initiative to create and disseminate information about HIV and its prevention through the use of television, radio, outdoor, online and print media. The mission of the campaign is to “use the power of media to educate and compel people to act – to protect themselves and get tested for the virus – and to erase the stigma for those afflicted (www.knowhivaids.org).” Despite frequent television and radio campaigns and attention-grabbing billboards and print advertisements, this public health campaign has failed to change the behaviors and increase the knowledge of many deaf and hard of hearing Americans. In America, 600,000 persons are functionally deaf and 35,000,000 have self-reported hearing trouble (Mitchell). Because of barriers to education, stigmatization, and lack of a credible spokesperson, HIV/AIDS campaigns have failed to educate and promote safe behavior in the deaf and hard of hearing population.

According to their website (knowhivaids.org), the KNOW HIV/AIDS campaign in the U.S. is aimed at the “public-at-large as well as those groups that are most at-risk for the disease, including youth, people of color, women, and men who have sex with men.” This list excludes deaf and hard-of-hearing people from the most at-risk population. Although limited statistical information is available on the problem of HIV/AIDS in the deaf and hard of hearing population, studies suggest that HIV/AIDS affects deaf people at a higher rate than hearing people. The Maryland Department of Health and Mental Hygiene collected data on HIV testing in 2003. During this time, 38,602 hearing people were tested in public facilities and 832 deaf people were tested. Among those tested, 813 hearing people were HIV+ and 38 deaf people were HIV+ (Monaghan). This data suggests that deaf people are two times more likely to be HIV+. When this data is analyzed using population figures, .015% of the general population tested positive and .17% of the deaf population tested positive (Monaghan). This suggests that deaf people may be 10 times more likely to be HIV+. Additional data should be collected across the United States to determine the prevalence of HIV/AIDS in the deaf and hard of hearing population. Although currently data is only available in Maryland, The KNOW HIV/AIDS campaign should include deaf and hard-of-hearing people in their definition of most at-risk population.

Public health campaigns will not change a person’s behavior if the campaign is solely based on disseminating information. In fact, the adoption of health-enhancing behavior is “a function of the level of knowledge, attitudes and skills that the person possesses in relation to the health risk and the extent to which individual or socioenvironmental incentives or barriers exist that facilitate or inhibit ceasing the risky behavior (Egger, pg. 29).” For deaf and hard of hearing people, many barriers prevent education and socioenvironmental disincentives, such as stigma, prevent health-enhancing behavior. By utilizing a trusted spokesperson and framing campaigns using Deaf norms and values, public health campaigns can create socioenvironmental incentives for getting tested and protecting oneself from HIV. In order to prevent HIV/AIDs in the deaf community, practitioners must work with the deaf community to provide education about HIV prevention, remove physical, cultural and systemic barriers, and create campaigns using trusted and respected sources in the deaf community.

Barriers to Education and Protection

Many barriers prevent deaf and hard of hearing people from being exposed to HIV education. Additionally, factors within the social and physical environment prevent this population from making the behavior changes these programs are intended to promote. One physical barrier to obtaining information is a linguistic barrier. Deaf Americans communicate using American Sign Language (ASL). ASL is a unique, visual language with its own grammar and syntax. Many Deaf Americans are fluent only in ASL. Because the average deaf person has a 3rd grade reading level in English, print material is often inaccessible to them (Peinkofer, 392). The KNOW HIV/AIDS campaign created a 32-page educational pamphlet entitled, “Get Informed, Get the Facts about HIV/AIDS and other Sexually Transmitted Diseases.” This pamphlet is printed in English and is inaccessible to deaf people that are not fluent in English. KNOW HIV/AIDS has not created a version of their pamphlet in ASL for the deaf and hard of hearing population. Activists in South Africa recently created a comic book entitled, “Are Your Rights Respected?” using pictures and illustrations of South African Sign Language. KNOW HIV/AIDS could create similar educational media in America.

In addition to print media, KNOW HIV/AIDS creates ads and public service accouncements (PSA). In 2006, all PSA’s used radio media, an inaccessible source for the deaf and hard of hearing. Television advertisements from 2003 – 2005 are viewable through knowhivaids.org. However, none of the online advertisements are closed captioned for deaf and hard of hearing people that are fluent in English. The website and should provide captioned versions of their prior advertisements.

When campaigns do reach the deaf and hard of hearing population and are translated into ASL, the meanings are easy to misinterpret. In ASL, the term “positive” denotes something good or beneficial. If the campaign does not explain the terminology “HIV+”, an ASL user could misinterpret the health-status as something desirable. For example, in discussion, one ASL user explained a circumstance in which he did not understand the results of his blood chemistry tests at his doctor’s office. Despite receiving an explanation from his English-speaking doctor, the patient did not understand why the doctor was not concerned about all of the “negative” results on his test. He did not understand the results until a person that was fluent in both languages explained that “negative” means “acceptable” and “positive” means a “red flag.” Because ASL is a visual language, analogies such as “red flag” are easier to understand than “positive” and “negative”. A campaign developed for the Deaf community should explain HIV/AIDS terminology using ASL. Simply captioning previous advertisements will not be effective methods of changing behaviors in the deaf community. Campaigns must be created that educate deaf people in their own language and reflect the norms and values of their community.

Lack of accessible information leads to the dissemination of misinformation. Because the deaf community is a close-knit group, gossip and misinformation spreads quickly. Without sources of accurate information in ASL, incorrect information is spread by “word of hand” and deaf and hard of hearing people do not have resources to verify the information. By ignoring the needs of the deaf and hard of hearing community, KNOW HIV/AIDS is allowing misinformation to continue to spread.

HIV/AIDS clinics and information centers create systemic barriers for deaf and hard of hearing Americans. Through the knowhivaids.org website, visitors can enter their zipcode to find nearby testing facilities. This site does not give information about finding sites that have a qualified medical interpreter or hiring a qualified medical interpreter. Also, the site does not provide TTY (teletypewriter) phone numbers for deaf and hard of hearing people to contact the testing sites or the campaign’s informational hotline. These limitations make getting tested and seeking care difficult for deaf and hard of hearing people. Many support and educational networks available by phone are inaccessible because employees are not trained to accept a phone call from a TTY. Because of the lack of trained staff, many deaf and hard of hearing people repeatedly have their phone call terminated by an employee who hangs up on them.

Deaf and hard of hearing people may be afraid to access services because of the lack of confidentiality when hiring an interpreter. Because information is not accessible through the KNOW HIV/AIDS print media, website, or PSA’s, the only option for many Deaf people is to seek information at clinics where they must hire interpreters to obtain culturally-competent information. Many deaf and hard of hearing people will not feel comfortable talking about HIV/AIDS if they fear that an interpreter will not keep their information confidential. Even if the interpreter is certified and aware of the code of ethics, deaf and hard of hearing people are often still fearful about breach of confidentiality. This prevents them from obtaining information and getting tested for HIV.

The KNOW HIV/AIDS campaign ignores the cultural barriers to information that affect many deaf and hard of hearing people. Through their website, KNOW HIV/AIDS teaches the reader to “Get the Facts, Get Tested, and Protect Yourself.” They offer tips for talking about HIV/AIDS and HIV testing with a health care provider. In fact, they list questions to ask your provider during the visit (www.knowhivaids.org/tested_talking.html). These recommended behaviors are difficult to perform for many deaf and hard of hearing people because of cultural barriers. Many health care practitioners do not spend time educating their deaf and hard of hearing patients about HIV/AIDS because they do not hire appropriate interpreter services and communication is difficult between doctor and patient. Doctors ask family members to interpret or hire people that are not trained in medical sign language. Because of lack of confidentiality in these situations, many deaf and hard of hearing people are unable to perform the KNOW HIV/AIDS recommended behaviors. For example, KNOW HIV/AIDS tells visitors to their website to “be honest about your sexual experiences, your lifestyle and if you use protection (knowhivaids.org).” Honest conversation about stigmatized behaviors is difficult if information is being relayed through a family member or untrained interpreter. Doctors often do not hire interpreters at all and choose to write notes to their deaf and hard of hearing patients. Because of time constraints, limited information is passed between doctor and patient.

In addition to the cultural barrier caused by lack of trained medical interpreters, environmental factors such as stigmatization affect the provider-patient relationship. Culturally Deaf people view themselves as a linguistic minority with their own unique culture, norms, and values. However, medical professionals frequently view them as “disabled” and have a pathologic view of deaf people that does not recognize their culture and language. In a recent study, researchers found that many deaf and hard of hearing people feel that physicians do not respect their intelligence or method of communication. According to the study, “interviewees felt that most physicians, largely unconsciously, hold fundamental assumptions about deafness that, from the outset, undermine patient-physician relationships (Iezzoni, 358).” Many respondents noted that their doctors frequently questioned them about their deafness despite the fact that they were visiting for a different health concern. Because deaf and hard of hearing people feel stigmatized by physicians, they are less likely to ask questions about HIV/AIDS to their practitioner. Also, when medical professionals pity deaf people, it assaults their self-esteem. KNOW HIV/AIDS recommends that people should speak with a medical provider about testing. Deaf people will not accept health messages from people that do not respect their identity and culture. An effective public health campaign must educate the medical community about Deaf culture or provide effective alternatives to information and testing outside of the medical profession.

According to social science theory, “even where an individual accepts that their behavior puts them at risk, and has a full understanding of subsequent harms, other individual beliefs or environmental factors might inhibit adoption of healthy alternatives (Egger, 30).” For deaf and hard of hearing people, physical, cultural, and systemic barriers inhibit adoption of preventive measures. Even if a deaf person is aware of the dangers of HIV/AIDS, it is difficult to participate in honest conversation about risk factors and protection from disease. Stigma is an environmental factor that must be addressed by public health campaigns in order to promote behavior change for deaf and hard of hearing people.

Stigma

HIV/AIDS campaigns do not attack the stigma of having AIDS in the Deaf community. The stigmatization attached to having HIV/AIDS in the Deaf community is greater than in the hearing population. Deaf people view the disease as a “hearing” disease and a “gay” disease and this limits their willingness to engage in conversation about HIV/AIDS and get tested (AIDS Project Hartford). According to Protection motivation theory, behavior change is motivated by “perceived severity of the threatened harmful event and perceived likelihood that the threatened outcome will occur (Egger, 39).” The KNOW HIV/AIDS campaign only further propagates the myth that HIV does not affect deaf and hard of hearing people and decreases the perceived risk. Deaf people are invisible in the print media and advertisements created by KNOW HIV/AIDS. In the educational pamphlet “Get Informed, Get the Facts about HIV/AIDS and other Sexually Transmitted Diseases”, forty-four (44) pictures are placed throughout the pamphlet that show diverse populations of people at risk for HIV/AIDS including people of all races, ages, and sexual orientation. None of the pictures portray a person using sign language or hearing-aids. All of the KNOW HIV/AIDS campaigns use hearing actors and models. By not including pictures of deaf and hard of hearing people, KNOW HIV/AIDS is furthering the myth that it is a “hearing” disease.

Culturally Deaf people share a strong culture and common social space. Many Deaf people work together, go to accessible events together, and socialize together. Because it is a small and close-knit community, gossip is very prevalent and confidentiality is easily breached. As long as the stigma of having HIV/AIDS is not addressed, Deaf people will neither seek services nor get tested due to fear that others in their community will find out that they are HIV+ or have AIDS.

According to Maslow’s Hierarchy of Needs, “health needs might be compromised for the sake of satisfaction of lower-order needs before health promotion goals can be met (Egger, 31).” This theory states that behavior is motivated by a hierarchy of human needs and people must meet the lower level need before addressing higher level needs. From lowest to highest, human needs are categorized as physiological needs, safety, belongingness and love, esteem, and self-actualization (Siegel, class notes). Because of the stigmatization of people with HIV and AIDS in the Deaf community, Deaf people don’t want to get tested for HIV because other members of the community might find out and gossip about them. For many Deaf people, the belongingness and love of the community is more important than reaching level 5, self-actualization. The knowledge-action gap can only be understood by bringing in the values and attitudes of the community. In order to promote the behavior of getting tested for HIV, public health campaigns must attack the stigma of HIV/AIDS. The KNOW HIV/AIDS campaign does not attack stigma in deaf and hard of hearing populations. In fact, in only increases stigma by excluding Deaf people from the campaign.

Delivering the Message

KNOW HIV/AIDS does not include deaf and hard of hearing people in the decision-making process about the campaigns. Deaf people should be considered an at-risk population by KNOW HIV/AIDS and should be consulted and included to better disseminate public health information. According to social science theory, “the input received and analyzed must have personal relevance to the individual for action to be taken (Egger, 30).” Information must be disseminated by deaf and hard of hearing people in a manner that takes into account the norms and values of the population.

In addition to providing information from a trusted source, campaigns should recruit respected Deaf leaders to deliver the message. The KNOW HIV/AIDS campaign utilizes hearing actors that use spoken language. Current print media does not portray deaf or hard of hearing people signing or using hearing aids. In order to provide relevance to Deaf people, KNOW HIV/AIDS should assist in creating advertisements in ASL using respected Deaf leaders.

Historically, health care practitioners have only targeted campaigns about hearing aids and cochlear implants to deaf and hard of hearing people. Deaf people feel that they are continually labeled by science as having something wrong with them and will not respond well to campaigns by medical professionals that do not respect them. Public health information should not originate from the same source of information that tells deaf and hard of hearing people that they are medically “inferior.”

Deaf community leaders must be given the resources and information to lead HIV/AIDS awareness campaigns in their community. Trusted information sources can disseminate public health information in accessible ways. By involving the Deaf community in the campaign, accurate information will reach the community. Using this information, leaders in the community can use Deaf norms and values to decrease the stigmatization of having HIV/AIDS and getting tested for the disease.

Creating a Better Campaign

The KNOW HIV/AIDs campaign has failed to consider the needs of the deaf and hard of hearing population despite the fact that they are an at-risk population. Deaf leaders should determine the best method of educating their community. The KNOW HIV/AIDS campaigns should provide outreach, advertising opportunities and funding to Deaf leaders in order to create an effective message. Instead of primarily using television and radio advertisements, Deaf community leaders may orchestrate campaigns that include visual information in deaf news sources and newsletters, live theatre and internet campaigns. Because the stigmatization of having HIV/AIDS will not disappear quickly, deaf and hard of hearing people need a safe and confidential place to get information and get tested for the disease. By creating messages in ASL and posting them on websites that are highly trafficked by deaf and hard of hearing people, Deaf leaders can teach deaf and hard of hearing people about HIV/AIDS in a safe environment. Also, ASL advertisements can be shown at events frequented by deaf and hard of hearing people such as at movie theatres that offer open captioning or Deaf sporting events. HIV/AIDS will continue to threaten the deaf and hard of hearing population until campaigns provide culturally-competent educational information about HIV prevention, remove cultural, physical, and systemic barriers, and deliver information using trusted spokespersons.

References

Egger, G., Spark, R., & Donovan, R. (2005). Health Promotion Strategies and Methods. Australi: McGraw-Hill
Iezzoni, L., O’Day, B., Killeen, M., Harker, H. (2004) Communicating about Health Care: Observations from Persons Who Are Deaf or Hard of Hearing. Ann Intern Med; 140, 356-362.
ANDnetwork.com. (2006, September 5) HIV/Aids comic book for the deaf in SA. [online] Retrieved December 6, 2006 from the World Wide Web: http://health.andnetwork.com/index?service=direct/0/Home/recent.fullStory&sp=l51385
Gaomas, S. (2005, September 30). Deaf people Cut Out of HIVAwareness Campaigns. Deaf Today. [On-line newspaper] Retrieved November 12, 2006 from the World Wide Web: http://www.deaftoday.com/v3/archives/2005/09/deaf_people_cut.html
Janssen, RS., Valdiserri, RO., Durham, TM., Nichols, WP, Seiler, EM., Jaffe, HW. (2003, April 18). Advancing HIV Prevention: New Strategies for a Changing Epidemic --- United States, 2003. Morbidity and Mortality Weekly Report [Magazine on-line]. Retrieved November 12, 2006 from the World Wide Web: http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5215a1.htm
Bat-Chava, Y., Martin D., Kosciw, JG. (2005) Barriers to HIV/AIDS knowledge and prevention among deaf and hard of hearing people. AIDS Care, 17(5), 623-34.
Peinkofer, J. (1994). HIV Education for the Deaf, a Vulnerable Minority. Public Health Reports, 109(3), 390-396.
Poor, L. AIDS and the Deaf. [On-line exhibit]. The Body: The Complete HIV/AIDS Resource. Retrieved November 14, 2006: http://www.thebody.com/loelpoor/deafaids/brad.html
Monaghan, L. (2006) Maryland 2003 HIV infection statistics for hearing and Deaf populations: Analysis and policy suggestions. Special Issue of Deaf Worlds: 22(1)
Groce, N. (2003, April 26) HIV/AIDS and People With Disability. The Lancet: 361; 1401-1402.
Groce, N. (2004, April). Global Survey on HIV/AIDS and Disability. Retrieved November 12, 2006 from the World Wide Web: http://cira.med.yale.edu/globalsurvey
Lacey, M. (2004, March 28). For Africa’s Deaf and Blind, AIDS Is an Unknown Language. The New York Times. [on-line newspaper]. Retrieved November 14, 2006 from the World Wide Web: http://query.nytimes.com/gst/fullpage.html?sec=health&res=9C02E5D91130F93BA15750C0A9629C8B63
AIDS Project Hartford. Deaf and Dying. [Article posted on the World Wide Web] Hartford, CT: Collins, N. and Smalley, R. Retrieved November 16, 2006 from the World Wide Web: http://www.aidsprojecthartford.org/deaf.html

2 Comments:

Blogger Leila Monaghan said...

Thanks for letting us post your paper Wendy!

all best, Leila

10:45 AM  
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3:17 AM  

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