Janet W. McGrath

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.

A group-based intervention to increase condom use among HIV serodiscordant couples in India, Thailand, and Uganda

Abstract This study assessed the feasibility of a group-based couples intervention to increase condom use in HIV serodiscordant couples in three countries (India, Thailand and Uganda). The intervention focused on communication, problem solving, and negotiation skills. Forty-three couples enrolled in the intervention (15 in India, 14 in Thailand, and 14 in Uganda) and 40 couples completed all study activities. Participants were interviewed at baseline and at one and three months post- intervention. The intervention consisted of two same sex sessions and two couples sessions with ‘homework’ to practice skills between sessions. The same intervention modules were used at each site, tailored for local appropriateness. Participants at each site were enthusiastic about the intervention, citing information about HIV serodiscordancy and the opportunity to meet couples ‘like us’ as important features. Participants reported increased comfort discussing sex and condoms with their partner, although some participants remain concerned about situations when condoms might not be used (e.g. when drunk). At three-month follow up 90% of the participants reported having been able to use the skills from the intervention with their partner. Our results highlight the feasibility of this couples group-based intervention and the need for ongoing support for discordant couples.

Task shifting for tuberculosis control: A qualitative study of community-based directly observed therapy in urban Uganda

This qualitative study of task shifting examined tuberculosis (TB) therapy under modified community-based directly observed treatment short-course (CB-DOTS) in Kampala, Uganda. New TB patients selected one of two strategies: home-based DOTS and clinic-based DOTS. Relevant socio-economic characteristics, treatment-seeking experiences and outcomes were assessed over eight months of follow-up. Of 107 patients recruited, 89 (83%) selected home-based DOTS. Sixty-two patients (70%) under home-based DOTS and 16 patients (89%) under clinic-based DOTS had successful outcomes following completion of tuberculosis therapy. Treatment supporters’ provision of social support beyond observing drug ingestion contributed to successful outcomes under both strategies. Home-based DOTS provides continuity of social support during therapy, strengthening the potential for treatment success. Conventional health facility-based DOTS can be modified in resource-limited urban Africa to offer a viable DOTS strategy that is sensitive to personal preference. Shifting the task of DOTS support away from only qualified health workers to include laypersons in the patients’ social-support network may contribute to meeting World Health Organization (WHO) treatment targets. We recommend an intervention evaluating this modified DOTS strategy on a larger scale in TB high-burden, resource-poor urban settings.

Developing AIDS vaccine trials educational programs in Uganda.

Summary: In preparation for HIV vaccine trials, data on a cohorts knowledge about vaccines and vaccine studies are required so as to tailor educational materials to adequately meet local needs. Interviews (n = 1,182) conducted as part of a 3‐year prospective study of Ugandan military men aged 18 to 30 years determined what information, in addition to standard trials information, would be required to ensure comprehension of trial procedures. The interviews highlighted four points: (1) the cohort has a lot of knowledge about vaccines but conflates whether vaccines cure or prevent disease; (2) there is a general lack of knowledge about clinical trials procedures; (3) the desire to be protected from HIV/AIDS is a common reason for being willing to participate in a hypothetical vaccine trial; and (4) concern about side effects is a common reason for being unwilling to participate in a trial. These four points guided the focus of the vaccine trials education, which used locally appropriate analogies to introduce complex unfamiliar concepts such as placebos and blinding. This case study highlights the value of incorporating baseline interviews to assess the educational needs of study populations.

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.

Case studies in ethics and HIV research

Human Rights, International Guidelines, and HIV Research.- U.S. Regulations and HIV-Related Research.- The Informed Consent Process.- Working with Boards and Committees: ECs, DSMBs, CABs.- Researcher-Participant Relations.- Researcher-Community Relations.- Recruiting for HIV-Related Research.- Clinical Trials.- Observational Studies.- Behavioral Intervention Studies.- Ethical Issues in Multicenter/Multisite Studies.- HIV Research with Children.- HIV-Related Research with Cognitively Impaired Persons.- Studies with Minority Populations.- Research in International Settings.- Activity-Defined Populations.- Training the Next Generation of Researchers.- Training Community.

The reliability and validity of the Modified Condom Outcome Expectancy Scale (MCOES) among an international sample of HIV-negative partners of people living with HIV/AIDS

Safer sexual behaviour is vital in curbing the HIV epidemic in many developing countries where the epidemic is primarily transmitted through heterosexual sex. Reliable and valid assessment of factors related to HIV risk behaviours are important in testing behavioural theories as well as informing effective AIDS prevention programmes. The current study tests the reliability and validity of a modified version of the Condom Outcome Expectancy Scale (COES) among a sample of HIV-negative sexual partners (n=100) of HIV-infected individuals in Pune, India, Chang Mai, Thailand and Kampala, Uganda. Internal consistency reliability was measured using Cronbachs alpha coefficient, which had a value of 0.80 for the entire sample, with site-specific values of: 0.78 for India; 0.75 for Thailand; and 0.79 for Uganda. Test-retest reliability was conducted to test the scales stability over time with 60% of the sample, resulting in a Cronbachs alpha coefficient of 0.70. The scales structure was explored by analyzing response scores on the items using principal components analysis, which yielded a two-factor solution. The study indicates the utility of a modified version of the widely tested COES across international settings. Such research is necessary in understanding intervention targets across international settings.

Indices to Measure Risk of HIV Acquisition in Rakai, Uganda

Introduction Targeting most-at-risk individuals with HIV preventive interventions is cost-effective. We developed gender-specific indices to measure risk of HIV among sexually active individuals in Rakai, Uganda. Methods We used multivariable Cox proportional hazards models to estimate time-to-HIV infection associated with candidate predictors. Reduced models were determined using backward selection procedures with Akaikes information criterion (AIC) as the stopping rule. Model discrimination was determined using Harrells concordance index (c index). Model calibration was determined graphically. Nomograms were used to present the final prediction models. Results We used samples of 7,497 women and 5,783 men. 342 new infections occurred among females (incidence 1.11/100 person years,) and 225 among the males (incidence 1.00/100 person years). The final model for men included age, education, circumcision status, number of sexual partners, genital ulcer disease symptoms, alcohol use before sex, partner in high risk employment, community type, being unaware of a partners HIV status and community HIV prevalence. The Models optimism-corrected c index was 69.1 percent (95% CI = 0.66, 0.73). The final womens model included age, marital status, education, number of sex partners, new sex partner, alcohol consumption by self or partner before sex, concurrent sexual partners, being employed in a high-risk occupation, having genital ulcer disease symptoms, community HIV prevalence, and perceiving oneself or partner to be exposed to HIV. The models optimism-corrected c index was 0.67 (95% CI = 0.64, 0.70). Both models were well calibrated. Conclusion These indices were discriminative and well calibrated. This provides proof-of-concept that population-based HIV risk indices can be developed. Further research to validate these indices for other populations is needed.

‘Slipping through the cracks’: Policy implications of delays in HIV treatment seeking

Abstract Public health initiatives to ‘test and treat’ HIV-infected persons require understanding HIV care seeking. A study of 101 HIV-infected women receiving anti-retroviral medications in Kampala, Uganda, examined barriers to HIV care. Participants entered HIV/AIDS care late, despite knowing their risk and having sought care for symptoms. Over half of the participants (51%) reported delays of up to 5 years from when they suspected they were infected to seeking an HIV test. Some women reported that they did not perceive a need to be tested because they ‘knew’ they had HIV due to their partners death from AIDS. Once tested, delays in entering HIV specific care ranged from less than 6 months to over 5 years. The most common reason reported for entering HIV care was the occurrence of serious or persistent symptoms. Late presentation for HIV care in this cohort is due to the inability of the medical system to link women to appropriate care. Women ‘slip through the cracks’ of this system, despite their care seeking behaviours. The inability to provide linkage to care is a challenge at the health system level that threatens the success of ‘test and treat’ protocols

AIDS in Africa: A bioanthropological perspective

The epidemiological characteristics of acquired immunodeficiency syndrome (AIDS) in Africa are reviewed. Infection rates with human immunodeficiency virus 1 (HIV‐1) and human immunodeficiency virus 2 (HIV‐2) vary across the continent of Africa with the highest infection rates occurring in East and Central Africa. The primary pattern of infection with HIV‐1 is characterized by high rates of heterosexual vs. homosexual transmission, a low male to female sex ratio of cases, and high rates of pediatric AIDS. Cultural anthropologists have emphasized variation in human sexual behavior as an important factor in understanding the HIV epidemic. These studies have focussed on understanding the range of sexual risk behaviors present in different cultures and the cultural meanings of these behaviors. Biological anthropologists approach the study of human disease with an interest in human biological variation, evolutionary models, and the interface between biology and behavior. A Bioanthropology Research Agenda for AIDS is proposed which focuses on these three areas. Potential research domains for biological anthropologists include: human biological variation and cofactors of infection and disease, the evolutionary impact of HIV infection, and the interface between biology and behavior and the biological impact of behavior. Working with colleagues in other disciplines, biological anthropologists can assist in furthering understanding of the variables of HIV infection and disease.