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Using Research and Knowledge Translation to Address HIV Stigma

By Jelani Kerr, PhD

HIV continues to be a significant health concern in the African American community. Nationally, the numbers are pretty disturbing. The Centers for Disease Control and Prevention estimates that 1 in 20 African American men will be affected by HIV compared to 1 in 132 White men. An estimated 1 in 48 African American women will experience HIV compared to 1 in 880 White women. In Kentucky, African Americans only make up about 8% of the population but account for 33% of HIV cases. It should be noted that these differences in HIV risk cannot be fully explained by behavior as African American women and African American men who have sex with men demonstrate fewer sexual risk behaviors than their White counterparts.

Another group that is receiving increasing attention in HIV research is older adults. Due to an increase in new infections among older populations and medical advances that extend the lifespan of people with HIV, the HIV positive population in the US is increasingly aging. Although the advent of more effective and tolerable medications has been a continuing success in the fight against HIV, the aging of the HIV positive population brings new challenges, including comorbidities (other diseases besides HIV) and the numerous life complexities that come with getting older.

Stigma is one of the biggest public health challenges in addressing HIV. Given the fear around HIV, in many ways, stigma can be worse than the disease. Stigma not only impacts quality of life for people living with HIV, but it also can lead to social isolation, less healthcare engagement, and less medication use – all of which are necessary for living a long, healthy life. As of late, scholars, the medical community, and the public health community have placed greater emphasis on stigma reduction as a means to improving care uptake and medication adherence. This shift in thinking presents public health practitioners with opportunities to develop innovative approaches to reduce stigma and address erroneous perceptions about HIV and the HIV positive.

Earlier in 2017, the University of Louisville Cooperative Consortium for Transdisciplinary Social Justice Research began funding research that partners community-based organizations and researchers of all stripes to engage in scholarship with “real-world” impact. One such project brings together University of Louisville researchers and the House of Ruth (an AIDS service organization focused on housing and support for people living with HIV) for a unique arts-based approach to raise awareness about HIV and the concerns of older African Americans living with HIV disease. More specifically, this group works with actors and a group of older HIV positive African Americans (age 50 and older) to develop monologues focusing on the experiences of the HIV positive.

The project began two years ago with faculty members from the Kent School of Social Work (Lesley Harris), the School of Public Health and Information Sciences (Jelani Kerr), and Nursing (Timothy Crawford). The focus of the first phase of this study was to 1) identify if a relationship exists between stress, stigma, and care-engagement among older HIV positive African Americans, and 2) explore how these relationships operate.

A pilot survey was conducted to address the first study objective and qualitative interviews and focus groups were used to realize the second. The current phase of this study employs re-storying of qualitative interviews into five minute monologues focusing on various aspects of stigma, stress, and resilience among participants (think “Vagina Monologues” with a public health spin). The content of the monologues is designed to help service providers, students, healthcare providers, and the general public to understand the experiences and recognize commonalities with study participants. Performances will take place on Feb., 9 at Hotel Louisville. For more information, please follow this link or visit Facebook

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