“It's all the time in my mind”: Facilitators of adherence to antiretroviral therapy in a Tanzanian setting

Abstract

Although HIV positive patients' adherence to antiretroviral therapy (ART) is relatively high in African nations, as compared with industrialized nations, few studies have explored why. In the research presented here we aimed to understand the dynamics of good adherence to ART among patients receiving free ART and HIV-related services from a clinic in Arusha, Tanzania. We conducted individual semi-structured interviews with 6 health care providers and 36 patients at a health care center in Arusha in 2006. Interviews were conducted in Swahili using interview guides informed by social cognitive theory. All interviews were audio-recorded, transcribed in Kiswahili, translated into English and coded for themes and patterns with ATLAS.ti. Of the 36 patients interviewed (mean time on ART 9.8 months; range 1–23 months), 32 reported perfect adherence in the previous month. Self-reported adherence was high despite economic hardship, depression, low rates of HIV disclosure and high perceived HIV-associated stigma. Five factors emerged to explain excellent adherence in the face of such barriers. First, all respondents experienced substantial improvements in their health after starting ART; this supported their confidence in the medication and motivated them to adhere. Second, their perceived need to be able to meet their family responsibilities motivated respondents to stay healthy. Third, respondents developed specific strategies to remember to take pills, particularly routinizing pill-taking by linking it with daily activities or events. Fourth, material and emotional support received from others facilitated adherence. Finally, respondents trusted the advice and instructions of their health care providers, who regularly emphasized adherence. The facilitating factors identified were consistent with the constructs of social cognitive theory and highlighted the importance of interventions that address multiple levels of influence on adherence.

Introduction

In 2007, 2.1 million people worldwide died from HIV and AIDS-related illnesses, with over 75% of those deaths occurring in Africa (UNAIDS, 2007). Antiretroviral therapy (ART) offers an unprecedented opportunity to avert deaths of people living with HIV/AIDS, and funds and political will have been mobilized to make ART available where it is most needed globally. In Tanzania, where approximately two million people (6.5% of the adult population) are living with HIV (UNAIDS, 2007), the government is committed to making free ART available to as many residents as possible. An estimated 136,000 people were receiving ART (31% of those in need) at over 200 sites across the country, as of the end of 2007 (World Health Organization, 2008b).

The success of an African nation's scale-up of ART will require bolstering the capacity and reach of the health care system and shifting the system's orientation from an acute to a chronic care model. At the same time, success will depend on patients' abilities to adhere to medications, which are influenced by factors extending beyond the clinical environment. Poor adherence can lead to the virologic failure of patients using cheaper first-line treatment regimens and the spread of drug resistant forms of the virus, resulting in a public health calamity (Stevens, Kaye, & Corrah, 2004). Poor adherence can result in increased costs to health and society, in terms of direct financial costs of failed treatment and higher hospitalization rates. It can also entail indirect costs of lost productivity of patients and burden on family caregivers (Sokol, McGuigan, Verbrugge, & Epstein, 2005). The impact of sub-optimal adherence to ART is particularly concerning in countries that lack capacity for monitoring drug resistance and where second-line regimens are prohibitively expensive or unavailable (Cohen, 2007).

Initial findings about adherence to ART regimens in sub-Saharan Africa have been promising. A meta-analysis found that a pooled estimate of 77% of patients in African settings achieved adequate adherence (most often measured as taking 95% of prescribed pills), compared with just 55% of patients in North American settings (Mills, Nachega, Buchan, et al., 2006). The high levels of adherence have been observed in a subsequent multi-site study, including Tanzania (Hardon et al., 2006). At the same time as we have observed overall good adherence among African patients, evidence suggests that a large number of African patients may drop out of ART programs. A review of 33 patient cohorts taking ART in 13 African countries suggested only 60% of patients remain enrolled in programs after two years, with the ambiguous category of “loss to follow up” accounting for 56% of all attrition (Rosen, Fox, & Gill, 2007). The potentially high drop out levels suggest we need a better understanding of patients' experiences taking ART. Understanding how patients integrate ART in the context of their daily lives and what strategies and motivations they use to adhere may contribute not only to supporting and sustaining good adherence, but also to keeping patients in care over time.

While quantitative studies have assessed factors that create challenges for adherence in Africa (Mills, Nachega, Bangsberg, et al., 2006), only a few studies have explored factors that facilitate adherence, and how social and institutional contexts may contribute to optimal adherence (Crane et al., 2006, Nam et al., 2008). In a Uganda study, near-perfect adherence was motivated by a belief that ART was responsible for keeping them healthy and by a desire to stay alive to look after the well-being of family members, and concluded that these motivators outweighed the challenges patients faced securing funds to purchase ART (Crane et al., 2006). In a study in Botswana, patients who were able to achieve excellent adherence were those who had accepted their HIV status and engaged an encouraging confidante in their care (Nam et al., 2008). In North American studies, the factors that facilitate adherence to ART have been shown to span individual, inter-personal and institutional levels (Mills, Nachega, Bangsberg, et al., 2006).

Research about people's experiences taking long-term medication thus far has lacked a theoretical basis and may benefit from the application of behavioral theory as an organizing framework (World Health Organization, 2001). Social cognitive theory (SCT) has been used as a theoretical lens for conducting observational adherence research and for developing and testing interventions to enhance adherence to ART (Diiorio et al., 2007, Munro et al., 2007). The organizing concept of SCT is reciprocal determinism, which asserts that personal factors, social factors and behavioral factors all interact to determine behavior. According to SCT, adherence is a function of one's self efficacy to adhere, which is influenced, among other things, by positive reinforcements received to adhere, observational experiences of adherence, skills used to regulate adherence, and expectations of the results of faithfully taking medication (Baranowski, Perry, & Parcel, 2002).

In the study presented in this paper, we applied SCT to inform our examination of how factors in the clinic setting, as well as in HIV-infected patients' lives outside the clinic, enhanced motivation and capacity to adhere to ART. It is the first study to document the perspectives of both patients and their clinic providers on what facilitates optimal adherence to ART in a Tanzanian setting. Understanding the context in which patients in Tanzania take their ART as well as the motivations and techniques that patients employ to adhere to their medications within that context, and how these are reinforced in a health care setting, may provide important lessons for the expansion and sustainability of ART services in Tanzania and other developing nations.