Hunger, Waiting Time and Transport Costs: Time to Confront Challenges to ART Adherence in Africa

University of Amsterdam, Amsterdam School for Social Science Research, Amsterdam, The Netherlands.
AIDS Care (Impact Factor: 1.6). 06/2007; 19(5):658-65. DOI: 10.1080/09540120701244943
Source: PubMed


Adherence levels in Africa have been found to be better than those in the US. However around one out of four ART users fail to achieve optimal adherence, risking drug resistance and negative treatment outcomes. A high demand for 2nd line treatments (currently ten times more expensive than 1st line ART) undermines the sustainability of African ART programs. There is an urgent need to identify context-specific constraints to adherence and implement interventions to address them. We used rapid appraisals (involving mainly qualitative methods) to find out why and when people do not adhere to ART in Uganda, Tanzania and Botswana. Multidisciplinary teams of researchers and local health professionals conducted the studies, involving a total of 54 semi-structured interviews with health workers, 73 semi-structured interviews with ARTusers and other key informants, 34 focus group discussions, and 218 exit interviews with ART users. All the facilities studied in Botswana, Tanzania and Uganda provide ARVs free of charge, but ART users report other related costs (e.g. transport expenditures, registration and user fees at the private health facilities, and lost wages due to long waiting times) as main obstacles to optimal adherence. Side effects and hunger in the initial treatment phase are an added concern. We further found that ART users find it hard to take their drugs when they are among people to whom they have not disclosed their HIV status, such as co-workers and friends. The research teams recommend that (i) health care workers inform patients better about adverse effects; (ii) ART programmes provide transport and food support to patients who are too poor to pay; (iii) recurrent costs to users be reduced by providing three-months, rather than the one-month refills once optimal adherence levels have been achieved; and (iv) pharmacists play an important role in this follow-up care.

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Available from: Sikhulile Moyo, Sep 30, 2015
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    • "Second, there is likely still a barrier between HIV-testing and seeking care [7,35-37]. While doing HIV-testing in the home clearly overcame some of the obstacles of stigma, as well as the actual and opportunity costs of traveling to a fixed VCT center, the same obstacles would still exist for those seeking care at a PSC [6,37]. Further strategies are needed to improve the uptake of HIV care services after HBCT. "
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    ABSTRACT: Background In much of Africa, most individuals living with HIV do not know their status. Home-based counseling and testing (HBCT) leads to more HIV-infected people learning their HIV status. However, there is little data on whether knowing one’s HIV-positive status necessarily leads to uptake of HIV care, which could in turn, lead to a reduction in the prevalence of common infectious disease syndromes. Methods In 2008, Kenya Medical Research Institute (KEMRI) in collaboration with the Centers for Disease Control and Prevention (CDC) offered HBCT to individuals (aged ≥13 years) under active surveillance for infectious disease syndromes in Lwak in rural western Kenya. HIV test results were linked to morbidity and healthcare-seeking data collected by field workers through bi-weekly home visits. We analyzed changes in healthcare seeking behaviors using proportions, and incidence (expressed as episodes per person-year) of acute respiratory illness (ARI), severe acute respiratory illness (SARI), acute febrile illness (AFI) and diarrhea among first-time HIV testers in the year before and after HBCT, stratified by their test result and if HIV-positive, whether they sought care at HIV Patient Support Centers (PSCs). Results Of 9,613 individuals offered HBCT, 6,366 (66%) were first-time testers, 698 (11%) of whom were HIV-infected. One year after HBCT, 50% of HIV-infected persons had enrolled at PSCs – 92% of whom had started cotrimoxazole and 37% of those eligible for antiretroviral treatment had initiated therapy. Among HIV-infected persons enrolled in PSCs, AFI and diarrhea incidence decreased in the year after HBCT (rate ratio [RR] 0.84; 95% confidence interval [CI] 0.77 – 0.91 and RR 0.84, 95% CI 0.73 – 0.98, respectively). Among HIV-infected persons not attending PSCs and among HIV-uninfected persons, decreases in incidence were significantly lower. While decreases also occurred in rates of respiratory illnesses among HIV-positive persons in care, there were similar decreases in the other two groups. Conclusions Large scale HBCT enabled a large number of newly diagnosed HIV-infected persons to know their HIV status, leading to a change in care seeking behavior and ultimately a decrease in incidence of common infectious disease syndromes through appropriate treatment and care.
    BMC Infectious Diseases 07/2014; 14(1):376. DOI:10.1186/1471-2334-14-376 · 2.61 Impact Factor
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    • "A number of studies have reported barriers to good adherence to antiretroviral therapy in the initial period after enrolment on to care, which have included: costs of visiting clinics to access care [14], which can be as high as 10-20% of monthly salary/wages per visit [15,16], occurrence of unpleasant side effects, such as lipodystrophy [17-19] and HIV-associated stigma [20,21]. "
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    ABSTRACT: We report on the adherence experience of a group of people living with HIV on ART over six years in Uganda. Between 2005 and 2009, we followed up 41 participants who were also part of a clinical trial comparing home and facility based delivery of ART in Jinja, eastern Uganda. We conducted qualitative in-depth interviews at enrolment, 3, 6, 18 and 30 months to capture experiences with adherence over time. In 2011 we returned to these participants to find out how they were fairing with long term adherence. We managed to retrace 24 participants and interviewed them about their experience. We thematically analysed the data and compared findings over time. Initially there were few barriers to adherence and many followed the adherence guidance closely. By year six, relaxation of these rules was noticeable although self-reported adherence continued to be high. Alcohol consumption was more common than before. Some relatives of the participants who had died claimed that some deaths were a result of alcohol. While participants reported that ART had allowed them to reclaim independence and return to work the changes in work and social routines created new challenges for adherence. Side effects like lipodystrophy were not only causing some stigma but for some tested their faith in the drugs. Many participants reported resumption of sexual lives but apart from those who selected same status partners, disclosure to new partners was minimal. Good adherence practice to ART wanes over the long-term, and people who may have disclosed at initiation find it difficult to do so to new partners once they are healthy. Further adherence interventions and support with disclosure over the course of therapy may need to be considered. (Words: 283).
    PLoS ONE 10/2013; 8(10):e78243. DOI:10.1371/journal.pone.0078243 · 3.23 Impact Factor
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    • "Published data have suggested that CHBC may substantially strengthen adherence and responses to ART in rural, resource-limited settings, especially where transportation to a health centre presents an obstacle to adherence [46, 47, p. 8] as was the case in this study. Supporting the ethnographic findings of Ware et al. [48] of “economic obstacles and the strength of social relationships as principal mediators of sustained adherence in sub-Saharan Africa” (p. "
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    ABSTRACT: Introduction: 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. Methods: This article reports findings from a qualitative study of a CHBC organiztion serving an estimated 2500 clients in rural Swaziland. Semi-structured questionnaires with 79 HIV-positive clients [people living with HIV and AIDS (PLWHA)] yielded data on diverse aspects of being HIV positive, including insights on whether and how PLWHA perceived care supporters to facilitate ART adherence in a high stigma and structurally impoverished setting. Results: Ninety-two percent of participants said their health had improved since care supporters came into their lives. A major finding was that an estimated 53% of participants said they would have died, a few from suicide had the care supporter never intervened. More than one in four participants (27.9%) sought HIV testing after a care supporter began visiting them. Nearly a third (31%) commenced ART after and largely as a consequence of care supporter intervention. Approximately one in four (23%) reported that their care supporter had helped them to disclose their HIV-positive status to family members. Twenty-seven percent said they had felt discouraged or had been discouraged from taking ART by members of their family or community. Discussion: General inductive analysis of participant reports suggested two social mechanisms of CHBC impact on ART adherence: (i) cultivating client-care supporter "talk" to enhance treatment uptake and literacy, reduce felt stigma and challenge social pressures to desist from ART and (ii) real-time interactions between clients and care supporters whereby the care "relationship" was itself the "intervention," providing lay counsel, material and financial assistance, and encouragement when clients suffered stigma, side effects and other obstacles to adherence. These social dynamics of adherence generally fall outside the purview of conventional clinical and public health research. Conclusions: PLWHA reports of care supporter practices that enabled ART adherence demonstrated the pivotal role that CHBC plays in many PLWHA lives, especially in hard to reach areas. Relative to clinic personnel, care supporters are often intensely engaged in clients' experiences of sickness, stigma and poverty, rendering them influential in individuals' decision-making. This influence must be matched with on-going training and support of care supporters, as well as a clear articulation with the formal and informal health sectors, to ensure that PLWHA are correctly counselled and care supporters themselves supported. Overall, findings showed that PLWHA experiences of CHBC should be captured and incorporated into any programme aimed at successfully implementing the Joint United Nations Programme on HIV and AIDS (UNAIDS) Treatment 2.0 agenda Pillar 4 (increasing HIV testing uptake and care linkages) and Pillar 5 (strengthening community mobilization).
    Journal of the International AIDS Society 10/2013; 16(1):17978. DOI:10.7448/IAS.16.1.17978 · 5.09 Impact Factor
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