Margaret S. Winchester

Challenging the Paradigm: Anthropological Perspectives on HIV as a Chronic Disease

Recently HIV has been framed as a ‘manageable’ chronic disease in contexts in which access to effective care is reliable. The chronic disease paradigm emphasizes self-care, biomedical disease management, social normalization, and uncertainty. Data from a longitudinal study of patients (N = 949) in HIV care at two sites in Uganda, collected through semistructured interviews and ethnographic data, permit examination of the salience of this model in a high burden, low resource context struggling to achieve the promise of a manageable HIV epidemic. Our data highlight the complexity of the emerging social reality of long-term survival with HIV. Participants struggle to manage stigma as well as to meet the costs involved in care seeking. In these settings, economic vulnerability leads to daily struggles for food and basic services. Reconceptualizing the chronic disease model to accommodate a ‘social space,’ recognizing this new social reality will better capture the experience of long-term survival with HIV.

Early HIV disclosure and nondisclosure among men and women on antiretroviral treatment in Uganda

Efforts to expand access to HIV care and treatment often stress the importance of disclosure of HIV status to aid adherence, social support, and continued resource mobilization. We argue that an examination of disclosure processes early in the process of seeking testing and treatment can illuminate individual decisions and motivations, offering insight into potentially improving engagement in care and adherence. We report on baseline data of early HIV disclosure and nondisclosure, including reasons for and responses to disclosure from a cohort of men and women (n=949) currently accessing antiretroviral treatment in two regions of Uganda. We found early disclosures at the time of suspicion or testing positive for HIV by men and women to be largely for the purposes of emotional support and friendship. Responses to these selected disclosures were overwhelmingly positive and supportive, including assistance in accessing treatment. Nonetheless, some negative responses of worry, fear, or social ostracism did occur. Individuals deliberately chose to not disclose their status to partners, relatives, and others in their network, for reasons of privacy or not wanting to cause worry from the other person. These data demonstrate the strategic choices that individuals make early in the course of suspicion, testing, and treatment for HIV to mobilize resources and gain emotional or material support, and similarly their decisions and ability to maintain privacy regarding their status.

Synergistic vulnerabilities: Antiretroviral treatment among women in Uganda

Despite being an early success story in the reduction of HIV infection rates, Uganda faces myriad challenges in the recent era of accelerated antiretroviral treatment (ARV) scale-up. For those able to access treatment, ongoing vulnerabilities of poverty and violence compound treatment-related costs and concerns. This paper explores experiences of one particularly vulnerable population – women on ARVs who have also experienced intimate partner violence (IPV). Data were collected over 12 months in Uganda. They include ethnographic interviews (n = 40) drawn from a larger sample of women on ARV and semi-structured interviews with policy-makers and service providers (n = 42), examining the intersection of experiences and responses to treatment from multiple perspectives. Womens narratives show that due to treatment, immediate health concerns take on secondary importance, while other forms of vulnerability, including IPV and poverty, can continue to shape treatment experiences and the decision to stay in violent relationships. Providers likewise face difficulties in overburdened clinics, though they recognise womens concerns and the importance of considering other forms of vulnerability in treatment. This analysis makes the case for integrating treatment with other types of social services and demonstrates the importance of understanding the ways in which synergistic and compounding vulnerabilities confound treatment scale-up efforts.

HIV as social and ecological experience

The spread and varied impacts of the HIV/AIDS epidemic demonstrate the complex and reciprocal relationships between the socio-political and biophysical dimensions of human health. Yet even with increasing research and policy attention there remain critical gaps in the literature on how HIV-positive households manage health through their engagement with social and ecological systems. This is particularly urgent given improvements in the global response to the epidemic, whereby expanded access to antiretroviral therapy has extended the possibility for survival for years or decades. Because many HIV-positive families and communities in the Global South remain dependent upon a diverse set of resources to generate income and meet subsistence needs, the impacts of disease must be understood within a mix of social processes, including the maintenance of land and collection of natural resources. Similarly, biophysical systems disrupted by HIV/AIDS vary depending upon resource use and locally-specific dynamics that influence opportunities for agrarian production. This paper reports on the findings from a structured survey completed in three communities in northeast South Africa in 2013 that is integrated with focus group discussions and qualitative interviews conducted from 2012-2016. We concentrate upon the diverse ways that individuals and families experience HIV through livelihood systems that are reliant on economic and natural resources. Because the access and use of these resources are mediated by existing social, cultural, and institutional systems, as well as historical spatial economies, we analyze how this produces differential lived experiences for HIV-positive individuals and households in the age of expanded access to antiretroviral therapy.

Routines, Hope, and Antiretroviral Treatment among Men and Women in Uganda

Antiretroviral treatment programs, despite biomedical emphases, require social understanding and transformations to be successful. In this article, we draw from a qualitative study of HIV treatment seeking to examine the drug-taking routines and health-related subjectivities of men and women on antiretroviral treatment (ART) at two sites in Uganda. We show that while not all participants in ART programs understand clinical protocols in biomedical terms, they adopt treatment-taking strategies to integrate medication into daily practices and social spaces. In turn, these embedded practices and understandings shape long-term hopes and fears for living with HIV, including the possibility of a cure. More significant than new forms of citizenship or sociality, we suggest that quotidian dimensions of treatment normalization shape the long-term experience of medication and outlook for the future.

Project Redemption: Conducting Research with Informal Workers in New York City

Informal workers are a challenging group to work with, due to geographically dispersed locations, undocumented migrants, and other forms of vulnerability. We discuss the process through which we gained entry to work with informal workers in New York City. We work with “canners”, a population which collects recyclables and deposits them at a redemption center to collect cash refunds. Partnering with a nonprofit organization solves issues of group organization, but difficulties remain in building relationships with individuals. We used a combination of in-person meetings, an iterative and collaborative research design, and incentives to lay the groundwork for multi-method research with this group.

Building sustainable networks: Introducing the pan institution network for global health

In the era of Sustainable Development Goals and record numbers of students seeking educational opportunities abroad, university global health partnerships are quickly becoming a mainstay. These partnerships can bring together researchers, students, and community members in ways that address education, research, and community health needs. There are compelling to having institutional partnerships so that individuals can collaborate to have a sustainable impact compared to working individually within institutions. A collective base of expertise may also leverage scarce resources and help to develop creative solutions to intractable issues. Frequently though, universities working together on these issues can reinforce existing disparities and unequal relationships that prioritize the flow of information, bodies, and agendas from higher to lower resourced parts of the globe. We take as a starting point that partnerships, if built, maintained, and managed in an equitable fashion have the potential to generate a lasting positive impact on global health.

Decentralization, healthcare access, and inequality in Mpumalanga, South Africa

Abstract Healthcare access and utilization remain key challenges in the Global South. South Africa represents this given that more than twenty years after the advent of democratic elections, the national government continues to confront historical systems of spatial manipulation that generated inequities in healthcare access. While the country has made significant advancements, governmental agencies have mirrored international strategies of healthcare decentralization and focused on local provision of primary care to increase healthcare access. In this paper, we show the significance of place in shaping access and health experiences for rural populations. Using data from a structured household survey, focus group discussions, qualitative interviews, and clinic data conducted in northeast South Africa from 2013 to 2016, we argue that decentralization fails to resolve the uneven landscapes of healthcare in the contemporary period. This is evidenced by the continued variability across the study area in terms of government‐sponsored healthcare, and constraints in the clinics in terms of staffing, privacy, and patient loads, all of which challenge the access‐related assumptions of healthcare decentralization. HighlightsSouth Africas ongoing healthcare decentralization policies reshape access to care.Local health dynamics in Mpumalanga are spatially and historically produced.Policy rollout should consider local variation in experience.

HIV Citizenship in Uneven Landscapes

The HIV/AIDS epidemic has taken on a new course in recent years with expanded access to antiretroviral therapy in the Global South. Although this transition is extending the lives of individuals for years or even decades, it is also creating new relationships between citizens and the state that are driven by resource needs specific to HIV management. This article details findings from an ongoing research project in northeast South Africa that is examining the social and ecological impacts of HIV/AIDS. Qualitative interviews are combined with ethnographic observations of a rural primary care clinic to document the ways in which residents and health care institutions are managing HIV. While initiating care for HIV-positive patients on antiretroviral therapy, clinics and other health care agencies advocate behavioral practices that challenge existing cultural norms and spatial economies, particularly in the realm of nutrition and food access. The importance of accessing certain foods is advocated as necessary for maintaining bodily health, yet this therapeutic citizenship confronts historical systems of inequality produced through spatial segregation. The consequence is that the coupling of drug provision with public health interventions produces uneven opportunities for health management that are mediated by cultural, ecological, and political systems in the era of managed HIV. Key Words: health, health and environment, HIV/AIDS, political ecology of health, South Africa, therapeutic citizenship.

Marriage, violence and HIV: the shifting policy context in Uganda

Abstract The policy environment for vulnerable women in Uganda is rapidly changing, with the aim of introducing more punitive measures for violent offenders and more options for women seeking help. This paper examines HIV-positive women who experienced intimate partner violence in two regions of Uganda prior to the enactment of the Domestic Violence Act of 2010. Based on in-depth interviews and observations, it reports on women’s views of marriage and relationships, and their strategies for help seeking to show the interaction between the two phenomena within the local cultural and political context. HIV-positive women in Uganda reshape their notions of marriage and love based on experiences of violence, illness management and broader social factors. Their narratives of relationships and conflict reveal an ambivalence toward formal marriage because of both its security and rights and its potential to inhibit leaving, as well as a reluctance to seek help through formal means. This construction of marriage is intertwined with the shifting social backdrop in Uganda, in particular the increasing rollout of antiretroviral treatment for HIV and the development of new policies surrounding violence, marriage and divorce. Women’s experiences show potential points of intervention and the need for multi-sectoral responses to violence.