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Disability and HIV: Eliminating Barriers to Sexual Health Care and Education

December 2011

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Intellectual Disabilities

The lack of adequate sexual health education for people with intellectual disabilities is reflected in the research about their knowledge of HIV/AIDS. In one study, young adults with mild or moderate intellectual disabilities demonstrated significant gaps in knowledge about HIV/AIDS and risk reduction methods as compared to a control group of non-intellectually disabled students.19 They also exhibited maladaptive attitudes regarding HIV risk and condom use, and when presented with hypothetical risk situations they were more likely than non-intellectually disabled peers to present unsafe sexual solutions.20

Intellectual disabilities also put individuals at risk for HIV infection because they increase vulnerability to sexual abuse. In many cases, the criminality, culpability, and moral repugnance of such abuse are clear. In other cases, sexual abuse is more difficult to prevent and detect because of the challenge of discerning ability to consent to sexual activity and the confluence of victim and perpetrator roles. The United States Department of Justice reported that 68% to 83% of women with developmental disabilities experience sexual assault during their lifetimes.21 The effects of sexual abuse of people who are living with intellectual disabilities may be compounded by hurdles to obtaining police intervention, legal protection, or prophylactic care -- communication or access hurdles that non-disabled individuals do not face.


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Serious Mental Illness

Data on HIV/AIDS prevalence among people with serious mental illness continue to evolve. In the 1990s, studies found that people with serious mental illness faced elevated risks for HIV infection, estimating that prevalence ranged between 4% and 23% in urban institutional settings.22 Since then, other studies have focused on the epidemiology of serious mental illness and HIV comorbidity. Broadly, this research has found that HIV prevalence among people with schizophrenia and other types of serious mental illness is higher than that of the general population, but not as high as earlier studies predicted. In 2001, a multi-site study in the U.S. found HIV prevalence among people living with serious mental illness to be 5% in metropolitan areas and 1.7% in non-metropolitan areas.23 Another recent study that utilized Medicaid claims found that almost 2% of beneficiaries diagnosed with schizophrenia in eight metropolitan areas had also been diagnosed with HIV/AIDS, though there was wide geographic variation in prevalence.24 One of the factors that may elevate risk of HIV infection among people living with serious mental illness is substance abuse, as approximately 34.5% of people living with serious mental illness engage in at least one type of substance abuse.25

In one study, people with schizophrenia exhibited greater gaps in knowledge about HIV/AIDS than the general population, and certain misconceptions about HIV transmission were correlated with HIV risk behavior.26 However, research has demonstrated that sexual health education for people with severe mental illness can be effective, confirming that provision of accurate information about HIV and sexuality is critical to the health of people with mental illness.27


Strategies for Addressing Barriers

While the problems outlined are numerous and complex, none are beyond remedy. Implementing change to lower risk of HIV infection and expand access to HIV/AIDS care and treatment services for people living with disabilities begins at the individual level. Recognition of sexuality as a human constant, regardless of disability, is imperative. Training and education for health care providers on physical, sensory, and intellectual disability issues is also critical. This may encompass expanding providers' knowledge of how to adapt communication for maximally productive interaction with people who are living with disabilities and educating providers about additional community health care resources that are available for people who are living with disabilities. Changes in health care provision must incorporate the desires of patients -- the first step for providers may be to ask patients living with physical, sensory, or intellectual disabilities how they can be better served. Outside of the clinical setting, additional resources and greater support services are needed for health educators. While many health educators who work with people who are living with disabilities, particularly intellectual disabilities, want to facilitate sexual empowerment, they also struggle to balance limitations that result from inability to consent and vulnerability to sexual abuse.28

It is important to keep in mind that the challenges individuals with physical, sensory, or intellectual impairments face in accessing HIV/AIDS prevention and treatment resources will vary depending on the social, cultural, and economic environment in which they live. Nevertheless, as we have discussed, there are primary barriers that are consistent across environments. Additional scientific research on HIV/AIDS and disabilities is needed to gain a more accurate landscape of this portion of the HIV/AIDS epidemic, and to develop and implement new effective, inclusive, and cost-efficient policy changes.

Heather J. Heldman is an Arthur Russell Morgan Fellow for International Human Rights at the University of Cincinnati College of Law. She holds a B.A. in Ethics, Politics, and Economics and an M.P.H. in Global Health from Yale University. Hannah Slater is a third year History of Science, History of Medicine major and Global Health Fellow at Yale University.

For correspondence:
hjheldman@aya.yale.edu
hannah.slater@yale.edu


References

  1. Zulu, W. "I Had Polio. I Also Have Sex." Editorial. New York Times, 19 June 2011, New York ed., WK10.
  2. UNAIDS (2009) Disability and HIV Policy Brief. Geneva, UNAIDS.
  3. US Department of Health and Human Services. www.hhs.gov/od/about/fact_sheets/stdchapter25.html
  4. UNAIDS (2009) Disability and HIV Policy Brief. Geneva, UNAIDS.
  5. Rohleder P. "Educators' ambivalence and managing anxiety in providing sex education for people with learning disabilities." Psychodynamic Practice, 2010; 16(2):165-182.
  6. UNESCO (2007) Education for All Global Monitoring Report 2008 UNESCO Paris.
  7. UNAIDS (2009) Disability and HIV Policy Brief. Geneva, UNAIDS.
  8. Morrison EH, George V, Mosqueda L. "Primary care for adults with physical disabilities: perceptions from consumer and provider focus groups." Family Medicine. 2008;40(9):645-651.
  9. Grabois EW, Nosek JA, Rossi CD. "Accessibility of primary care physicians' offices for people with disabilities." Archives of Family Medicine. 1999;8:44-51.
  10. Chan L, Doctor JN, MacLehose RF, Lawson H, Rosenblatt RA, Baldwin LM, et al. "Do Medicare patients with disabilities receive preventive services? A population-based study." Archives of Physical Medicine and Rehabilitation. 1999;80(6):642-646.
  11. Becker H, Stuifbergen A, Tinkle M. "Reproductive health care experiences of women with physical disabilities: a qualitative study." Archives of Physical Medicine and Rehabilitation. 1997;78 (12 Suppl 5):S26-S33.
  12. Hanass-Hancock J and Satande L. "Deafness and HIV/AIDS: a systematic review of the literature." African Journal of AIDS Research. 2010; 9(2):187-192.
  13. Erting, C. J. "Deafness and literacy: Why can't Sam read?" Sign Language Studies. 1992;75:97-112.
  14. Bat-Chava Y, Martin D, Kosciw JG. "Barriers to HIV/AIDS knowledge and prevention among deaf and hard of hearing people." AIDS Care. July 2005;17(5):623-634.
  15. Barnett S, McKee M, Smith SR, Pearson TA. "Deaf sign language users, health inequities, and public health: opportunity for social justice." Preventing Chronic Disease. 2011;8(2). Accessed September 20, 2011.
  16. Lezzoni LI, O'Day BL, Killeen M, Harker H. "Communicating about health care: observations from persons who are deaf or hard of hearing." Annals of Internal Medicine. 2004;140: 356-62.
  17. Nzegwu, F. (2004) "The experience of visually impaired users of the NHS." Guide Dogs for the Blind Association.
  18. Philander JH, Swartz L. "Needs, barriers, and concerns regarding HIV prevention among South Africans with visual impairments: a key informant study." Journal of Visual Impairment and Blindness. 2006; 100: 111-115.
  19. McGillivray, J. A. "Level of Knowledge and Risk of Contracting HIV/AIDS Amongst Young Adults with Mild/Moderate Intellectual Disability." Journal of Applied Research in Intellectual Disabilities. 1999;12: 113-126.
  20. Ibid.
  21. US Department of Justice. www.ncjrs.gov/ovc_archives/factsheets/disable.htm
  22. Cournos F, McKinnon K. "HIV seroprevalence among people with severe mental illness in the United States: A critical review." Clinical Psychology Review. 1997;17:259-269.
  23. Rosenberg SD, Goodman LA, Osher FC, Swartz MS, Essock SM, Butterfield MI, Constantine NT, Wolford GL, Salyers MP. "Prevalence of HIV, hepatitis B and hepatitis C in people with severe mental illness." American Journal of Public Health. 2001;91:31-37.
  24. Walkup JT, Akincigil A, Amin S, Hoover D, Siegel M, Crystal S. "Prevalence of diagnosed HIV disease among Medicaid beneficiaries with schizophrenia in U.S. metropolitan areas." Journal of Nervous and Mental Disease. 2010;198:682-686.
  25. Rosenberg SD, Trumbetta SL, Mueser KT, Goodman LA, Osher FC, Vidaver RM, et al. "Determinants of risk behavior for human immunodeficiency virus/acquired immunodeficiency syndrome in people with severe mental illness." Comprehensive Psychiatry. 2001;42(4): 263-271.
  26. Grassi L, Pavanati M, Cardelli R, Ferri S andPeron L. "HIV-risk behaviour and knowledge about HIV/AIDS among patients with schizophrenia." Psychological Medicine. 1999; 29: 171-179.
  27. Higgins A, Barker P and Begley CM. "Sexual health education for people with mental health problems: what can we learn from the literature?" Journal of Psychiatric and Mental Health Nursing. 2006;13: 687-697.
  28. Rohleder P. "Educators' ambivalence and managing anxiety in providing sex education for people with learning disabilities." Psychodynamic Practice, 2010; 16(2):165-182.
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This article was provided by Gay Men's Health Crisis. It is a part of the publication GMHC Treatment Issues. Visit GMHC's website to find out more about their activities, publications and services.
 
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