1. In Search of Meaning: The Social Structural Factors that Impact Lived Experiences of Women of Color Living with HIV in Their Management of Multiple Chronic Illness Rashon I. Lane, University of California San Francisco • Global Food Insecurity Fellowship
Data Collection and Analysis
Results Cont.…
Introduction
Women described chronic disease management as coping or dealing with the disease, which provides a different perspective on what self management and food insecurity means for women of color living with HIV– beyond typical clinical and public health discourse. Participants lives are often confounded with managing other social determinants of health like food and housing insecurity and structural violence.
Conclusions
Their stories elicited how the painful remnants of the past trauma provides a continuous restructuring of unequal positoinality and enhances their social marginality.
Future research should include frameworks that emphasize the use of intersectionality and intersectional stigma (Berger, 2004) to understand multi-morbidity in women of color living with HIV.
Post Intentional Phenomenology serves as a useful methodology in understanding the ways that post structural theory can be incorporated in to
In the fall of 2016 and Spring of 2017, Seventeen (n=17) women were recruited and participated in the study. Participants enrolled in the San Francisco and Atlanta Women Interagency HIV Study (WIHS) (a multi-site longitudinal study), were identified for recruitment if they met the criteria of being HIV positive, a racial/ethnic minority, and had a diagnosis of DM2. 2 hour interviews were conducted in participants’ homes or at WIHS sites.
Written informed consent was obtained at the site of the interview and the institutional review board of the University of California, San Francisco approved the study (IRB # ).
Social Theory Methods
Phenomenology is a recommended methodology when the study goals are to understand the meanings of human experiences or to explore concepts from new and fresh perspective. . Phenomenology can be particularly useful in seeking to understand everyday practice such as chronic disease self management.
In Post Intentional Phenomenology (Vagle, 2015), the phenomenon is understood through an an analysis of how one can move with and through intentional relations with the phenomena by understanding positions of power. This moves beyond traditional forms of that focused on the essence of a phenomenon. This method specifically aims to incorporate post structural theory with phenomenology and was used to health illness practices. This method, recognizes that traditional phenomenology has not gone far enough to describe the ways in which bodies are ‘cultured and gendered’.
Thus, I adopted post-intentional phenomenology, as a way to explore how intersectional narratives are entangled in complex ways. It was essential that the methodology chosen was amenable to examining this phenomena from a post-structural perspective and be critical of relative social-structural factors.
An aging population of individuals living with HIV, have managed the disease since the 1980s and 1990s, however they are now faced with the management of additional chronic illness.
In the 35-year history of the HIV/AIDS epidemic, improved methods of HIV detection, earlier diagnosis, antiretroviral therapy (ART), and better care management have helped in improving the survival of People Living with HIV. However, we are now witnessing a growing population who are managing multi chronic morbidities. Some data indicates that Chronic illness rates, like type 2 diabetes are higher among this population group, and we also know that disparities exists. For example, among African American and Latina women are In the general population, African Americans are 40% more likely to have hypertension than their whites, and diabetes rates are 77% higher among blacks, and diabetes rates are 66% higher among Hispanics, (CDC, 2014).
While many other studies have recognized the burden of HIV for women of color, very little qualitative studies have focused on what it’s like to be a woman of color who is constant state of managing multiple chronic illnesses.
To better understand the lived experience of women of color managing multi-morbidity and HIV, I applied an intersectional perspective on how women of color living with HIV and other chronic illness are impacted by structural inequalities.
This research pulls from intersectionality theory and praxis to better understand how the multiplicative nature of race, class and gender serve as indicators of power in the management of HIV and other chronic conditions.
Future Goals
This research will be utilized to better understand how women of color, particularly women of African American women manage HIV survivorhood. Future, analyses will incorporate intersectional stigma as a framework to guide theories and practice in addressing structural inequalities that impact this population.
As a public health practitioner, I will seek to integrate frames of trauma informed care into community and health care systems interventions for African American women living with HIV, to better address the social determinants of health that worsen health outcomes like hypertension, type 2 diabetes and asthma.
Future research, includes a media analysis that examines the social discourse and portrayal of African American women living with HIV as survivors.
Research Aim and Questions
The aim of this research is to describe lived experiences with the intent of highlighting how women of color living with HIV come to give meaning to managing multiple chronic conditions.
Research Questions
What is it like to be a women of color living with HIV/AIDS and managing multiple chronic conditions in the San Francisco Bay Area and Atlanta?
How do women of color living with HIV and multiple chronic illness experience food insecurity, displacement, gender discrimination and racism?
Results
Two themes are presented here that emerged from this qualitative study.
Legacies of Trauma
A past history of traumatic experiences was salient across all participants. Early in the interview process, it became apparent that the women wanted to share the context and social situations that shaped their lives. For example, a majority (of participants were previous drug users. Participants shared that they started using drugs and alcohol at a young age, majority having started during the crack epidemic in the 1980s.
Women voiced how experiences with stigma and discrimination within medical system early on in the HIV epidemic had lasting effects on their lives and reported incidence of discrimination among providers currently. Additionally, many of the women reported recent urban displacement which increased their food insecurity.
2) HIV Survivor Management
The second theme highlights the complexity of multi-morbidity for women living with HIV as it intersects alongside the complexities of being an older women. Many women noted that they are now most concerned with managing other illnesses beyond HIV. Managing their survivorhood often including lacking transportation to obtain the food needed to stay healthy or not having access to healthy foods.
Literature Cited
Berger, M.T Workable Sisterhood The Political Journey of Stigmatized Women with HIV/AIDS. Princeton, New Jersey, Princeton University Press.
CDC. Diagnoses of HIV infection in the United States and dependent areas. (2014). HIV Surveillance Report  Accessed April 10, 2016:
Vagle, M Crafting Phenomenological Research. Routledge Taylor and Francis Group: New York.
Acknowledgements
Women’s Interagency HIV Study (WIHS) Participants
In Collaboration with the Women and Diabetes Study (WAND)
Kartika Palar-WAND PI
Lila Sheira- Research Analyst
Funding Provided by: The UC President’s Global Food Initiative Student Fellowship Program
* The author is an employee at the U.S. Centers for Disease Control and Prevention (CDC). The findings and conclusions are those of the author and do not represent the official position of the CDC.