Least of My Worries: Food Security, Diet Quality, and Antiretroviral Adherence among People Living with HIV

More than forty years into the epidemic, HIV continues to impact the health and well-being of millions of people – nearly 37 million across the globe and in excess of 1 million in the U.S. – more than 44% of which live in the Southern United States. HIV continues to disproportionally affect marginalized populations, and vast amounts of money, time, and effort have been spent to understand how to slow the rate of new infections and improve health outcomes for People Living with HIV (PLWH). This study aims to understand the experience of living with and managing HIV while on an antiretroviral (ARV) regimen in the Southern United States. This dissertation presents data collected in surveys (n=131) and semi-structured interviews (n=45) to describe the lives of PLWA in the Tampa Bay, Florida region with regards to their food security, diet quality, mental health (stress, anxiety, and depression), antiretroviral treatment (ART), access to health care, and other characteristics, such as stable housing and experiences with forms of public support. Though the impetus for this study is grounded in an understanding of the synergistic relationship among food security, mental health, and adherence to ARVs, this study’s goals are to add the perspectives of PLWH to the syndemic literature. By exploring how these individuals and groups understand the relationship between syndemic factors, as well as other issues that emerge while discussing their attempts to manage HIV, my hope is that their words will provide programs and policies a better understanding of barriers and facilitators to ARV adherence. Participants in this study experienced varying levels of food security, but it is concerning that 19% experience low food security, and 35% very low food security. Regardless of food security scores or categories, overall the dietary quality of respondents is low and in need of improvement. Nearly three-quarters rely on SNAP to supplement their food purchases, though 60% reported that the amount they receive is not sufficient to meet their household needs. Participants reported struggling with a number of issues beyond attempts to manage their HIV. Nearly half of the participants in this study struggle with mental distress in the form of depression and anxiety (HSCL-10; 46%) as well as high levels of perceived stress (PSS-10; 48%). Many of them report experiencing stress related to shifting forms of support, attempts to meet basic needs such as housing, food, utilities, and hygiene items, and the overall wear and tear on their mental health that these frequent and overlapping issues present. Rather than be able to report any one stressor that rises above the rest in importance, through the course of their narratives, we find myriad issues that require some form of coping – with some things within their control, but many others were not. Access to housing was a prominent theme throughout the interviews, as well as the ways that housing influenced their ability to adhere to ART, cook or store food, have a safe place to sleep, and avoid interactions with authorities. In addition to housing difficulties, participants talked about a sense that they were not being seen or that they had fallen through the cracks – described as a ‘shadow place,’ the ‘gray place,’ ‘the place between’ or the place where one is invisible. They spoke about the struggle of navigating complex social safety net rules, including eligibility requirements and situations where gains in one form of support could mean loss in another. In this place, even maintaining the status quo – let alone getting ahead - is impossible and the system seems to be against you. In this place, food – and even HIV – is the least of their worries