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“I Haven’t Been Ill, I Know It’s There”: a Case Study Examination of the Social, Behavioral, Clinical, and Structural Factors that Contribute to Sustained Viremia Among Women Living with HIV

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Abstract

Compared to their HIV-seropositive male counterparts, HIV-seropositive women are less likely to achieve and retain viral suppression (VS). Data regarding the social, behavioral, clinical, and structural factors that facilitate or impede viral suppression among HIV-seropositive women is needed. This study aims to examine HIV-seropositive women’s perceptions regarding factors that contribute to their HIV treatment decisions. Two case studies describe the HIV treatment decision-making of two never suppressed, HIV-seropositive women aged 65 and 54. The framework method of analysis was employed to obtain a descriptive overview of three interrelated areas of inquiry: (1) the meanings women give to VS; (2) social, behavioral, clinical, and structural obstacles related to HIV medication adherence; and (3) women’s perceptions of what they need to achieve and sustain (VS). The meaning of VS for both women is influenced by how they currently feel. Women’s general feeling of wellness detracts from any sense of urgency that may be associated with engaging in HIV treatment. Mistrust of medical providers and unstable housing/unemployment pose as obstacles to medication adherence. Finally, women’s accounts of what they need to achieve and remain virally suppressed are influenced by a gap in understanding related to HIV treatment. HIV clinicians should routinely measure their patients’ HIV health literacy to ensure patients understand when to begin and why they should continue an HIV treatment regimen. To increase their capacity to provide appropriate HIV care, providers should take into consideration how patients’ life experiences and social locations influence their HIV treatment decision-making.

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Acknowledgements

Data in this manuscript were collected by the Women’s Interagency HIV Study (WIHS), now the MACS/WIHS Combined Cohort Study (MWCCS). MWCCS (Principal Investigators): U01-HL146333; Metropolitan Washington CRS (Seble Kassaye and Daniel Merenstein). The MWCCS is funded primarily by the National Heart, Lung, and Blood Institute (NHLBI), with additional co-funding from the Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD), National Institute on Aging (NIA), National Institute of Dental & Craniofacial Research (NIDCR), National Institute of Allergy And Infectious Diseases (NIAID), National Institute of Neurological Disorders And Stroke (NINDS), National Institute of Mental Health (NIMH), National Institute on Drug Abuse (NIDA), National Institute of Nursing Research (NINR), National Cancer Institute (NCI), National Institute on Alcohol Abuse and Alcoholism (NIAAA), National Institute on Deafness and Other Communication Disorders (NIDCD), National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), and National Institute on Minority Health and Health Disparities (NIMHD), and in coordination and alignment with the research priorities of the National Institutes of Health, Office of AIDS Research (OAR). MWCCS data collection is also supported by UL1-TR000004 (UCSF CTSA), UL1-TR001881 (UCLA-CTSI), P30-AI-050409 (Atlanta CFAR), P30-AI-050410 (UNC CFAR), P30-AI-027767 (UAB CFAR), and the DACC grant (U01-HL146193). The authors gratefully acknowledge the contributions of the study participants and dedication of the staff at the MWCCS sites.

Availability of Data and Material

The WIHS Public Data Set provides de-identified data (meeting HIPAA criteria) that may assist anyone interested in public health research. The WIHS data may be used to research natural and treated history of HIV in a cohort of women, including the examination of laboratory markers of HIV, antiretroviral therapies, and outcomes of advanced HIV disease. Access to the WIHS Public Data Set may be obtained by filling out the MACS & WIHS Public Data Set Request Form.

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  1. Georgetown University Medical Center, Division of Infectious Diseases, 2115 Wisconsin Avenue, NW, Suite 130, Washington DC, 20007, USA

    Lari Warren-Jeanpiere, Lakshmi Goparaju, Amanda Blair Spence, Kate Michel, Cuiwei Wang & Seble Kassaye

  2. University of Pittsburgh, College of Arts and Sciences, 140 Thackeray Hall, 139 University Place, Pittsburgh, PA, 15260, USA

    Anjali Kikkisetti

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  1. Lari Warren-Jeanpiere
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Correspondence to Lari Warren-Jeanpiere.

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Warren-Jeanpiere, L., Goparaju, L., Spence, A.B. et al. “I Haven’t Been Ill, I Know It’s There”: a Case Study Examination of the Social, Behavioral, Clinical, and Structural Factors that Contribute to Sustained Viremia Among Women Living with HIV. J. Racial and Ethnic Health Disparities 9, 1192–1205 (2022). https://doi.org/10.1007/s40615-021-01060-1

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