Academic journal article The Qualitative Report

"My Determination Is to Live": Narratives of African-American Women Who Have Lived with HIV for 10 or More Years

Academic journal article The Qualitative Report

"My Determination Is to Live": Narratives of African-American Women Who Have Lived with HIV for 10 or More Years

Article excerpt

Communities of color are disproportionately affected by health disparities, and public health efforts have been instrumental to reduce the burden of disease. As an example: HIV/AIDS incidence rates in African-American women decreased from 2005-2014, but this population still accounts for 64% of all new HIV infections in women. As incidence rates decrease, public health practitioners must attend to a growing population of long-term HIV survivors. Ensuring Persons Living With HIV/AIDS (PLWHA) progress along a continuum of care is vital to prolonging lives and preventing new infections. The HIV care continuum includes timely HIV testing and diagnosis, linkage to care, engagement in care, anti-retroviral therapy, and viral suppression (HIV Care Connect, 2015). With adequate linkages to care and appropriate treatment, many PLWHA achieve viral suppression. In addition to reducing transmission, persons with suppressed viral loads experience fewer opportunistic infections, have better health overall, and are less likely to become resistant to HIV medications (NAM, 2015). The Centers for Disease Control & Prevention (CDC, 2014) reported life expectancy can increase 40 years for persons in care, but only 40% of PLWHA are successfully linked to care. Therefore, even with evidence of the importance of anti-retroviral therapy (ART), there are barriers to PLWHA along the HIV care continuum.

Research to improve health outcomes for PLWHA has been ongoing for three decades. Lather and Smithies (1997) conducted one of the first qualitative studies to understand the experiences of HIV positive women. The authors explored the day-to-day lives of participants (N=26) by visiting support groups. The findings offered a look at what participants experienced, expressed, and witnessed during the early stages of the HIV/AIDS epidemic. To date, no other published research has provided as intimate a look from a target population's perspective of what it is like to live with HIV/AIDS. In addition to the little attention on the lived experiences of PLWHA, gaps in the literature persist in how public health practitioners can improve the quality for life of this population and how programs can be tailored to long-term survivors (High et al., 2012; High et al., 2008; Slavin et al., 2011). Randomized controlled trials, in-depth interviews, and surveys have explored sources of support, religion/spirituality, and medication-related beliefs of PLWHA (Dalmida, Holstad, Dilorio, & Laderman, 2012; Dalmida & Thurman, 2014; Kalichman, Eaton, & Cherry, 2010; Kremer, Ironson, & Kaplan, 2009). Smith, McCarragher, and Brown (2015) analyzed data from focus groups to assess HIV-related strengths and resilience. The authors' research is the only published study found addressing how African-American women have lived with the disease over an extended period and no studies we are aware of have used a narrative approach to explore the lives of this population. The researchers in this study sought to fill a knowledge gap related to the experience of this population by using a narrative approach to focus on the lives African-American women who have been HIV positive for an extended period. Specifically, we wanted to understand how African-American women who have been HIV positive for 10 or more years gave voice to their experiences. By understanding the lived experiences of long-term survivors, public health interventions can be designed to improve health outcomes and quality of life for this population and reduce health disparities. These narratives may also reduce stigma of PLWHA by providing rich subjective insight to their lives of real people to complement objective population statistics.

Self-of-the-Researcher

African-Americans (rates for men and women combined) comprise the largest number of HIV positive people in the U.S. (CDC, 2016). Although gay and bisexual men of all races are at greatest risk of transmission, women are more susceptible to contracting the virus from men than men are to contracting the virus from women. …

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