Robin Root

A qualitative study of community home-based care and antiretroviral adherence in Swaziland

Antiretroviral therapy (ART) has rendered HIV and AIDS a chronic condition for individuals in many parts of the world. Adherence, however, is integral to achieving chronicity. Studies have shown both relatively high ART adherence rates in sub‐Saharan Africa and the importance of community home‐based care (CHBC) to facilitating this process. In light of diminished HIV and AIDS funding globally and increased reliance on CHBC throughout Africa, a better understanding of how CHBC may strengthen ART adherence is essential to improving patients’ quality of life, tending to the needs of care supporters and achieving healthier populations.

Situating experiences of HIV-related stigma in Swaziland

Abstract With the worlds highest antenatal HIV prevalence rate (39.2%), Swaziland has also been described as among the most stigmatising. Yet, only recently was an anti-HIV stigma and discrimination (S&D) platform included in the governments National Multisectoral HIV and AIDS Policy. This study draws on a medical anthropological project in rural Swaziland to examine experiences of stigma among people living with HIV/AIDS (PLWH). Qualitative methods included a semi-structured questionnaire and interviews (n=40) to identify patterns of stigma across three domains: verbal, physical and social. Key informant interviews (n=5) were conducted with health personnel and support group leaders. Descriptive statistics were situated within a thematic analysis of open-ended content. Among the findings, participants reported extensive HIV-related rumouring (36.4%) and pejorative name-calling (37.5%). Nearly one in five (18.2%) could no longer partake of family meals. Homesteads, which are an organising principle of Swazi life, were often markedly stigmatising environments. In contrast to documented discrimination in health care settings, the health centre emerged as a space where PLWH could share information and support. Given the UNAIDS call for national partners to ‘know your epidemic’ by tracking the prevalence of HIV-related S&D, results from this study suggested that unless ‘knowing your epidemic’ includes the lived experiences of HIV stigma that blister into discernible patterns, effectiveness of national initiatives is likely to be limited. Multidisciplinary and locale-specific studies are especially well suited in examining the cultural dynamics of HIV stigma and in providing grounded data that deepen the impact of comprehensive HIV/AIDS policies and programming.

“We Smoke the Same Pipe”: Religion and Community Home-Based Care for PLWH in Rural Swaziland

ABSTRACT We draw on a study of a church-run community home-based care organization in Swaziland to explore how individuals living with HIV perceived caregivers’ impact on well-being. Our primary concern was to examine how religion, as a heuristic practice of Christian-based caregiving, was felt to be consequential in a direly underserved region. Part of a larger medical anthropological project, we conducted semi-structured interviews with 79 community home-based care clients, of whom half (53%) said they would have died, some from suicide, without its services. We utilized a critical phenomenological approach to interpret semantic and latent themes, and explicated these themes within a ‘healthworld’ framework. Participants were resolute that caregivers be Christian, less for ideological positioning than for perceived ontological sameness and ascribed traits: “telling the truth” about treatment, confidentiality, and an ethos of unconditional love that restored clients’ desire to live and adhere to treatment. Findings are intended to help theorize phenomenological meanings of care, morality, health, and sickness, and to interrogate authoritative biomedically based rationalities that underwrite most HIV-related global health policy.

Reckoning HIV/AIDS care: A longitudinal study of community home-based caregivers and clients in Swaziland

The article is a descriptive case study of a community home-based care (CHBC) organisation in Swaziland that depicts the convergence of CHBC expansion with substantially improved health outcomes. Comprised of 993 care supporters who tend to 3 839 clients in 37 communities across southern Swaziland, Shiselweni Home-based Care (SHBC) is illustrative of many resource-limited communities throughout Africa that have mobilised, at varying degrees of formality, to address the individual and household suffering associated with HIV/AIDS. To better understand the potential significance of global and national health policy/programming reliance on community health workers (task shifting), we analysed longitudinal data on both care supporter and client cohorts from 2008 to 2013. Most CHBC studies report data from only one cohort. Foremost, our analysis demonstrated a dramatic decline (71.4%) among SHBC clients in overall mortality from 32.2% to 9.2% between 2008 and 2013. Although the study was not designed to establish statistical significance or causality between SHBC expansion and health impact, our findings detail a compelling convergence among CHBC, improved HIV health practices, and declines in client mortality. Our analysis indicated (1) the potential contributions of community health workers to individual and community wellbeing, (2) the challenges of task-shifting agendas, above all comprehensive support of community health workers/care supporters, and (3) the importance of data collection to monitor and strengthen the critical health services assigned to CHBC. Detailed study of CHBC operations and practices is helpful also for advancing government and donor HIV/AIDS strategies, especially with respect to health services decentralisation, in Swaziland and similarly profiled settings.

Hazarding health: experiences of body, work, and risk among factory women in Malaysia.

In the 1970s, Malaysia launched an export-oriented development strategy as a means of financing the nations modernization. The success of the strategy hinged significantly on intensive recruitment of women for factory employment. I draw on descriptive qualitative research, including interviews (51), surveys (106), and ethnography in Malaysia to investigate factory womens experiences of work and work-related health risks. Discourse analysis surfaced a latent consciousness of bodily changes in relation to work. A grounded theory analysis showed a compromised access to occupational risk knowledge that may bear negatively on womens well-being and the role womens new labor identities played in mediating the meanings of work and risks. Given the predominance of women workers in low-end manufacturing globally, I aimed to contribute to theoretical and applied understandings of gender, globalization, and health.

“Controlling Ourselves, By Ourselves”: Risk Assemblages on Malaysia's Assembly Lines

Since the early 1990s, the Malaysian government has identified factories as high risk for HIV and AIDS. Signaling epidemiological concerns over the rising rates of HIV among factory workers, a significant proportion of whom are women, the label also appeared to reconstitute stereotypes of factory women as dangerously sexual and of factories as immoral spaces. Drawing on ethnographic research in the export processing zones of Penang, Malaysia in the mid-1990s, I examine the meanings and experiences of HIV risk among factory women themselves. Data were analyzed using discourse and grounded theory methods, the former to identify womens multiple modes of rationalizing HIV risks, and the latter to theorize the sources and significance of womens HIV risk assemblages. The heuristic of assemblages as localized knowledge spaces helped to show that biomedical and socioreligious risk lexica operated not as fixed epistemological categories but as situational resources in womens risk scripts. Overall, women desired multiple risk knowledges to help them “control themselves by themselves,” a project of reflexive self-shaping mediated by the diverse and discordant discourses of gender, ethnicity, and modernity in Malaysia that shaped how HIV risks were engendered and experienced.

Cultural Context of Reproductive Health

The anthropology of human reproduction is a dynamic field of research, generating new methods, data, and hypotheses on the biological, political-economic, and sociocultural factors that mediate human reproduction. Current research incorporates perspectives from all three domains to explore: (1) the effects of culture, class, race, and ethnicity on reproduction and reproductive health; (2) cross-cultural patterns of experiences with reproductive technologies; and (3) reproductive rights in the context of global health programs and human rights legislation. Cross-cultural studies of sexuality and reproduction are casting new light on the evolution of sexual norms and behavior, social organization, and family structures. Long underexplored, researchers are also studying male physiology, sexuality, and cultural concepts of paternity as they affect human reproductive activities.

AIDS as Occupational Hazard: Racial Mixing and Historical Space in Malaysia's Multinationals

In Malaysia, bangsa, a term blending race and ethnicity, structures modes of social and political‐economic organization that reflexively challenge and reinforce the significance of race, not just to the countrys three main groups but to the construction of risk as well. Tracing this reflexivity, the author bridges a historical rendering of Malaysias colonial‐capitalist incorporation with an ethnographic unpacking of its social artifacts: notions of space, place and race that confer on factories a high‐risk label for HIV/AIDS. It traces how multinational corporations, as landscapes of multiracial modernity, are both the quixotic trophies of Malaysias global integration and a source of social dread. Risk is ethnographically shown to be more a sociohistoric dynamic than a statistical probability, reflecting ideas of racial individuation and ideals of social stability and cultural immiscibility anchored in colonial governance structures of nineteenth‐century Malaya and operative in contemporary Malaysia.

Cultural Contexts of Reproductive Health

The anthropology of human reproduction is a dynamic field of research, generating new methods, types of data, and hypotheses on biological, political economic, and sociocultural factors that mediate human reproduction. Current research incorporates perspectives from archeological, biological, sociocultural, and linguistic anthropology to explore: (1) the dynamic effects of interactions among culture, class, race, and ethnicity on reproduction and reproductive health; (2) cross-cultural patterns of womens and mens experiences with assisted reproductive technologies; and (3) struggles for reproductive rights and reproductive justice within the contexts of global health programs and human rights legislation. Cross-cultural studies of sexuality and reproduction are casting new light on the evolution of sexual norms and behavior, social organization, and family structures. Long underexplored, researchers are focusing increasing attention on male physiology, sexuality, and cultural concepts of paternity as they affect human reproductive activities.

Food insecurity and ART adherence in Swaziland: the case for coordinated faith-based and multi-sectoral action

ABSTRACT Faith-based organisations (FBOs) have long been involved in HIV and AIDS impact mitigation and humanitarian relief, but most are not equipped to intervene in the structural drivers of food insecurity and attendant health inequities. Acknowledging limitations is as paramount a task for organisational effectiveness as maximising strengths. This article reports findings from a study of HIV-positive care supporters who volunteer with a church-run home-based care organisation in Swaziland. The article seeks to assess the impact of chronic food insecurity on antiretroviral adherence practices and how these individuals manage daily food shortages. Findings highlight the limited capacities of FBOs in highly vulnerable settings and the imperative for international and governmental coordination.