Patricia E. Stevens

The objective of the Savings, Agriculture, Governance, and Empowerment for Health (SAGE4Health) study was to evaluate the impact of a large-scale multi-level economic and food security intervention on health outcomes and HIV vulnerability in rural Malawi. The study employed a quasi-experimental non-equivalent control group design to compare intervention participants (n = 598) with people participating in unrelated programs in distinct but similar geographical areas (control, n = 301). We conducted participant interviews at baseline, 18–, and 36–months on HIV vulnerability and related health outcomes, food security, and economic vulnerability. Randomly selected households (n = 1002) were interviewed in the intervention and control areas at baseline and 36 months. Compared to the control group, the intervention led to increased HIV testing (OR 1.90; 95 % CI 1.29–2.78) and HIV case finding (OR = 2.13; 95 % CI 1.07–4.22); decreased food insecurity (OR = 0.74; 95 % CI 0.63–0.87), increased nutritional diversity, and improved economic resilience to shocks. Most effects were sustained over a 3-year period. Further, no significant differences in change were found over the 3-year study period on surveys of randomly selected households in the intervention and control areas. Although there were general trends toward improvement in the study area, only intervention participants’ outcomes were significantly better. Results indicate the intervention can improve economic and food security and HIV vulnerability through increased testing and case finding. Leveraging the resources of economic development NGOs to deliver locally-developed programs with scientific funding to conduct controlled evaluations has the potential to accelerate the scientific evidence base for the effects of economic development programs on health.

Poverty and lack of a predictable, stable source of food are two fundamental determinants of ill health, including HIV/AIDS. Conversely, episodes of poor health and death from HIV can disrupt the ability to maintain economic stability in affected households, especially those that rely on subsistence farming. However, little empirical research has examined if, and how, improvements in people’s economic status and food security translate into changes in HIV vulnerability. In this paper, we describe in detail the methods and protocol of an academic-NGO collaboration on a quasi-experimental, longitudinal study of the mechanisms and magnitude of the impact of a multilevel economic and food security program (Support to Able-Bodied Vulnerable Groups to Achieve Food Security; SAFE), as implemented by CARE. Primary outcomes include HIV vulnerability (i.e., HIV risk behaviors, HIV infection), economic status (i.e., income, household assets) and food security (including anthropometric measures). We recruited participants from two types of areas of rural central Malawi: traditional authorities (TA) selected by CARE to receive the SAFE program (intervention group) and TAs receiving other unrelated CARE programming (controls). In the intervention TAs, we recruited 598 program participants (398 women, 200 men) and interviewed them at baseline and 18- and 36-month follow-ups; we interviewed 301 control households. In addition, we conducted random surveys (n = 1002) in the intervention and control areas with a 36-month assessment interval, prior to and after implementation of SAFE. Thus, we are examining intervention outcomes both in direct SAFE program participants and their larger communities. We are using multilevel modeling to examine mediators and moderators of the effects of SAFE on HIV outcomes at the individual and community levels and determine the ways in which changes in HIV outcomes feed back into economic outcomes and food security at later interviews. Finally, we are conducting a qualitative end-of-program evaluation consisting of in-depth interviews with 90 SAFE participants. In addition to examining pathways linking structural factors to HIV vulnerability, this research will yield important information for understanding the impact of a multilevel environmental/structural intervention on HIV, with the potential for other sustainable long-term public health benefits.

There is limited information about what African Americans think about biobanks and the ethical questions surrounding them. Likewise, there is a gap in capacity to successfully enroll African Americans as biobank donors. The purposes of this community-based participatory study were to: (a) explore African Americans’ perspectives on genetics/genomic research, (b) understand facilitators and barriers to participation in such studies, and (c) enlist their ideas about how to attract and sustain engagement of African Americans in genetics initiatives. As the first phase in a mixed methods study, we conducted four focus groups with 21 African American community leaders in one US Midwest city. The sample consisted of executive directors of community organizations and prominent community activists. Data were analyzed thematically. Skepticism about biomedical research and lack of trust characterized discussions about biomedical research and biobanks. The Tuskegee Untreated Syphilis Study and the Henrietta Lacks case influenced their desire to protect their community from harm and exploitation. Connections between genetics and family history made genetics/genomics research personal, pitting intrusion into private affairs against solutions. Participants also expressed concerns about ethical issues involved in genomics research, calling attention to how research had previously been conducted in their community. Participants hoped personalized medicine might bring health benefits to their people and proposed African American communities have a “seat at the table.” They called for basic respect, authentic collaboration, bidirectional education, transparency and prerogative, and meaningful benefits and remuneration. Key to building trust and overcoming African Americans’ trepidation and resistance to participation in biobanks are early and persistent engagement with the community, partnerships with community stakeholders to map research priorities, ethical conduct of research, and a guarantee of equitable distribution of benefits from genomics discoveries.

Early HIV testing is critical for prevention and timely treatment. Missed opportunities for HIV diagnosis can result in unnecessary deaths at a time when access to antiretroviral treatment proves lifesaving. While HIV prevention and treatment research has increased, less research exists on women's experiences with HIV diagnosis, despite the fact that women are most affected. Insights from local women are critical in designing culturally meaningful interventions that thwart missed opportunities for early HIV diagnosis. The purpose of our study was to uncover steps women took to know their HIV diagnosis. Using narrative inquiry methodology informed by postcolonial feminism, we interviewed 40 HIV-positive women in Kenya. Five themes emerged related to uptake of HIV testing for women: (1) spouse's critical illness or death; (2) years of suffering from HIV-related symptoms; (3) sick children; (4) prenatal testing; and (5) personal desire to know one's HIV status. These findings centered on women experiences provide an important basis for health promotion interventions related to HIV prevention, earlier detection, and treatment.

Lack of access to health care has particularly brutal consequences for low-income U.S. women with HIV who, without regular and consistent primary care, including treatment with highly active antiretroviral therapy (HAART), are less likely to live long and well with HIV. This article explores barriers to basic health care encountered by a sample of 55 HIV-infected women from urban and rural Wisconsin who participated in a longitudinal, qualitative study. In a series of 10 in-depth, story-eliciting interviews over a two-year period, each woman explained in detail what it was like for her to obtain health care since becoming infected. Conveying women's subjective experiences of trying to get the care they needed, their stories highlight serious institutional impediments to health care and provide a discomfiting glimpse of the systemic forces that limit access to health itself. Findings convey how the extraordinarily high cost of U.S. health care, the unpredictable and disjointed array of out-of-pocket costs, and the complex and obfuscated intricacies of health insurance impeded women's access. They lived a paradoxical reality: having an illness they feared, needing treatment for long-term survival, and being unable to meet its costs. Each woman's story reflects deep fissures in the U.S. health care system.

We investigated the sexual behaviors of 55 HIV-infected women in Wisconsin who narrated their lives in 10 interviews over 2 years during 2000 to 2003. We sought to examine the interpersonal situations in which sexual risk occurred. During the prospective period, 58% (32) were abstinent and 24% (13) practiced safe sex exclusively. The remaining 18% (10) engaged in unprotected sexual intercourse, but only in primary partnerships, almost all of which were with serodiscordant partners. We focused on experiential detail and narrative depth of 10 women who had sex without condoms. These narratives demonstrate how the women attempted to initiate condom use but engaged in unprotected sexual intercourse regularly at the insistence of their partners. Consequently, these women lived in trepidation of causing their partners’ sickness and death.

In this longitudinal study, we investigated the diagnosis experiences of 55 human immuno-deficiency virus (HIV)-infected women. Women's immediate reactions upon hearing that they were infected with HIV were devastation, shock, and indignation. Long-term responses included depression, submersion of the HIV infection diagnosis, escalated drug and alcohol use, shame, and suicidality. It was usually months and sometimes years before women could extricate themselves from these patterns of response. It is critical to make HIV infection diagnosis the first intervention in a protocol of seamless support that sees women through the initial trauma of being diagnosed until longer term primary care and social services can be activated.

Thirty-three mothers whose ill children had been enrolled in clinical trials were interviewed about their experiences giving informed consent. The qualitative data from mothers of children with cancer and mothers of children with diabetes were compared and contrasted using narrative analysis techniques. Results suggest four critical factors that differentiated and defined their informed consent experiences: immediacy of the threat to the life of the child, trajectory of illness-related events, opportunities for autonomy, and expertise of mothers in managing their child’s illness and in negotiating the health care system. Implications for practice and research with families whose ill children are enrolled in clinical research are discussed.