Norma C. Ware

Explaining Adherence Success in Sub-Saharan Africa: An Ethnographic Study

Background Individuals living with HIV/AIDS in sub-Saharan Africa generally take more than 90% of prescribed doses of antiretroviral therapy (ART). This number exceeds the levels of adherence observed in North America and dispels early scale-up concerns that adherence would be inadequate in settings of extreme poverty. This paper offers an explanation and theoretical model of ART adherence success based on the results of an ethnographic study in three sub-Saharan African countries. Methods and Findings Determinants of ART adherence for HIV-infected persons in sub-Saharan Africa were examined with ethnographic research methods. 414 in-person interviews were carried out with 252 persons taking ART, their treatment partners, and health care professionals at HIV treatment sites in Jos, Nigeria; Dar es Salaam, Tanzania; and Mbarara, Uganda. 136 field observations of clinic activities were also conducted. Data were examined using category construction and interpretive approaches to analysis. Findings indicate that individuals taking ART routinely overcome economic obstacles to ART adherence through a number of deliberate strategies aimed at prioritizing adherence: borrowing and “begging” transport funds, making “impossible choices” to allocate resources in favor of treatment, and “doing without.” Prioritization of adherence is accomplished through resources and help made available by treatment partners, other family members and friends, and health care providers. Helpers expect adherence and make their expectations known, creating a responsibility on the part of patients to adhere. Patients adhere to promote good will on the part of helpers, thereby ensuring help will be available when future needs arise. Conclusion Adherence success in sub-Saharan Africa can be explained as a means of fulfilling social responsibilities and thus preserving social capital in essential relationships.

Transportation Costs Impede Sustained Adherence and Access to HAART in a Clinic Population in Southwestern Uganda: A Qualitative Study

The cost of transportation for monthly clinic visits has been identified as a potential barrier to antiretroviral (ARV) adherence in sub-Saharan Africa and elsewhere, although there is limited data on this issue. We conducted open-ended interviews with 41 individuals living with HIV/AIDS and attending a clinic in Mbarara, Uganda, to understand structural barriers to ARV adherence and clinical care. Almost all respondents cited the need to locate funds for the monthly clinic visit as a constant source of stress and anxiety, and lack of money for transportation was a key factor in cases of missed doses and missed medical appointments. Participants struggled with competing demands between transport costs and other necessities such as food, housing and school fees. Our findings suggest that transportation costs can compromise both ARV adherence and access to care. Interventions that address this barrier will be important to ensure the success of ARV programs in sub-Saharan Africa.

Health status in patients with chronic fatigue syndrome and in general population and disease comparison groups

PURPOSE To measure the functional status and well-being of patients with chronic fatigue syndrome (CFS), and compare them with those of a general population group and six disease comparison groups. PATIENTS AND METHODS The subjects of the study were patients with CFS (n = 223) from a CFS clinic, a population-based control sample (n = 2,474), and disease comparison groups with hypertension (n = 2,089), congestive heart failure (n = 216), type II diabetes mellitus (n = 163), acute myocardial infarction (n = 107), multiple sclerosis (n = 25), and depression (n = 502). We measured functional status and well-being using the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36), which is a self-administered questionnaire in which lower scores are indicative of greater impairment. RESULTS Patients with CFS had far lower mean scores than the general population control subjects on all eight SF-36 scales. They also scored significantly lower than patients in all the disease comparison groups other than depression on virtually all the scales. When compared with patients with depression, they scored significantly lower on all the scales except for scales measuring mental health and role disability due to emotional problems, on which they scored significantly higher. The two SF-36 scales reflecting mental health were not correlated with any of the symptoms of CFS except for irritability and depression. CONCLUSION Patients with CFS had marked impairment, in comparison with the general population and disease comparison groups. Moreover, the degree and pattern of impairment was different from that seen in patients with depression.

What's love got to do with it? Explaining adherence to oral antiretroviral pre-exposure prophylaxis for hiv-serodiscordant couples

Objective:Adherence may be the “Achilles heel” of pre-exposure prophylaxis (PrEP), a promising biomedical approach to HIV prevention. This article presents an explanation of PrEP adherence for African serodiscordant couples derived from qualitative data. Design:Explaining quantitative findings is one way qualitative investigation contributes to research in medicine and public health. This qualitative interview study was nested in the Partners PrEP Study, a phase III randomized trial evaluating oral tenofovir and emtricitabine/tenofovir PrEP to prevent HIV acquisition by HIV-uninfected partners in serodiscordant heterosexual couples. Methods:In-depth qualitative interviews were provided by 60 Partners PrEP Study participants in Uganda. Interviews used open-ended questions eliciting information on adherence experiences, barriers, and facilitators. An inductive approach informed by grounded theory methodology was used to analyze study data. Results:The proposed explanation may be summarized as follows. Serodiscordance destabilizes couples, as the HIV-negative partner reacts with anger, fear, and sadness to the implication of infidelity represented by HIV infection. A “discordance dilemma” ensues, as the desire to avoid acquiring HIV and the advantages of preserving the relationship become competing priorities. PrEP is seen as a solution—a means of safeguarding health without ending the relationship. PrEP users benefit from the support of partners, who reinforce adherence. Where discord in the relationship persists, adherence suffers. Conclusions:PrEP adherence in serodiscordant couples may be understood as a function of the desire to reduce risk although preserving a partnered relationship. PrEP use in stable couples may be associated with improved adherence and thus, greater effectiveness.

Social relationships, stigma and adherence to antiretroviral therapy for HIV/AIDS

Abstract Research on adherence to combination antiretroviral therapy has up to now focused largely upon problems of definition and measurement, and on the identification of barriers and supports. This paper examines the intersection between taking HAART and building a life with HIV/AIDS. Data consist of 214 qualitative interviews with 52 HIV-positive, active illegal drug users. A interpretive analysis drawing upon stigma and fear of disclosure as analytical constructs was applied to explain working tensions between efforts to develop social relationships on the one hand, and attempts to safeguard health through adherence on the other. The analysis specifies a mechanism through which stigma as a social process results in marginalization and exclusion. The hierarchical organization of multiple stigma is also noted. Loneliness and the desire for relatedness is intensified by drug use. Results suggest that persons with HIV/AIDS will not consistently subordinate other interests to prioritize adherence. Interventions aimed at supporting long-term adherence must address experienced conflicts between ‘health’ and ‘life’.

Sex Differences in Choice of College Science Majors

The process of choosing a scientific major was examined in a nationally representative sample of male and female college students of above-average ability. Science majoring was predicted by different constellations of factors for male and female students. Women who were attending a 4-year college, who reported having been influenced by high school teachers and guidance counselors in making plans for college, and who placed a high priority upon aspects of their future family and personal lives were less likely to major in science than their female peers. High socioeconomic status, positive assessments of their high schools, and attending a 4-year college predicted science majoring for men.

HIV Providers’ Perceived Barriers and Facilitators to Implementing Pre-Exposure Prophylaxis in Care Settings: A Qualitative Study

Oral pre-exposure prophylaxis (PrEP) can reduce HIV incidence among at-risk persons. However, for PrEP to have an impact in decreasing HIV incidence, clinicians will need to be willing to prescribe PrEP. HIV specialists are experienced in using antiretroviral medications, and could readily provide PrEP, but may not care for HIV-uninfected patients. Six focus groups with 39 Boston area HIV care providers were conducted (May–June 2012) to assess perceived barriers and facilitators to prescribing PrEP. Participants articulated logistical and theoretical barriers, such as concerns about PrEP effectiveness in real-world settings, potential unintended consequences (e.g., risk disinhibition and medication toxicity), and a belief that PrEP provision would be more feasible in primary care clinics. They identified several facilitators to prescribing PrEP, including patient motivation and normative guidelines. Overall, participants reported limited prescribing intentions. Without interventions to address HIV providers’ concerns, implementation of PrEP in HIV clinics may be limited.ResumenLa profilaxis pre-exposición via oral (PrEP) puede reducir la incidencia del VIH entre las personas en situación de riesgo. Sin embargo, para que PrEP tenga un impacto en la disminución de la incidencia del VIH, los médicos tienen que estar dispuestos a prescribir PrEP. Los especialistas en VIH tienen experiencia en el uso de medicamentos antirretrovirales, y podría proporcionar PrEP fácilmente, pero puede que no atiendan a pacientes no infectados por VIH. Se realizaron seis grupos focales con 39 proveedores de atención del VIH en el área de Boston (mayo-junio de 2012) para evaluar la percepción de barreras y facilitadores para la prescripción de PrEP. Los participantes articularon barreras logísticas y teóricas, como las preocupaciones sobre la eficacia de PrEP en el mundo real, las posibles consecuencias no deseadas (por ejemplo, riesgo de desinhibición y toxicidad de medicamentos), y la creencia de que la administración de PrEP sería más factible en las clínicas de atención primaria. Varios facilitadores para la prescripcion de PrEP fueron identificados, incluyendo la motivación del paciente y directrices normativas. En general, los participantes reportaron intenciones de prescripción limitadas. Sin intervenciones que hagan frente a las preocupaciones de los proveedores de atencion del VIH, la implementación de PrEP en las clínicas de VIH puede ser limitada.

Toward an understanding of disengagement from HIV treatment and care in sub-Saharan Africa: a qualitative study.

Norma Ware and colleagues conducted a large qualitative study among patients in HIV treatment programs in sub-Saharan Africa to investigate reasons for missed visits and provide an explanation for disengagement from care.

The prevalence of bulimia among college students.

A survey was conducted to determine the prevalence of bulimia and bulimic symptoms in a nonclinical sample of 907 college freshmen and seniors. Using criteria based on the Diagnostic and Statistical Manual of Mental Disorders, 4 per cent of the women and 0.4 per cent of the men were classified as bulimic. Symptoms of bulimia, such as binge eating, purging behaviors, and extreme fear of gaining weight, were much more prevalent.

High acceptability for cell phone text messages to improve communication of laboratory results with HIV-infected patients in rural Uganda: a cross-sectional survey study

BackgroundPatient-provider communication is a major challenge in resource-limited settings with large catchment areas. Though mobile phone usership increased 20-fold in Africa over the past decade, little is known about acceptability of, perceptions about disclosure and confidentiality, and preferences for cell phone communication of health information in the region.MethodsWe performed structured interviews of fifty patients at the Immune Suppression Syndrome clinic in Mbarara, Uganda to assess four domains of health-related communication: a) cell phone use practices and literacy, b) preferences for laboratory results communication, c) privacy and confidentiality, and d) acceptability of and preferences for text messaging to notify patients of abnormal test results.ResultsParticipants had a median of 38 years, were 56% female, and were residents of a large catchment area throughout southwestern Uganda. All participants expressed interest in a service to receive information about laboratory results by cell phone text message, stating benefits of increased awareness of their health and decreased transportation costs. Ninety percent reported that they would not be concerned for unintended disclosure. A minority additionally expressed concerns about difficulty interpreting messages, discouragement upon learning bad news, and technical issues. Though all respondents expressed interest in password protection of messages, there was also a strong desire for direct messages to limit misinterpretation of information.ConclusionsCell phone text messaging for communication of abnormal laboratory results is highly acceptable in this cohort of HIV-infected patients in rural Uganda. The feasibility of text messaging, including an optimal balance between privacy and comprehension, should be further studied.