Being HIV positive and staying on antiretroviral therapy in Africa: A qualitative systematic review and theoretical model

Abstract

BackgroundAdherence to antiretroviral therapy (ART) and long-term uninterrupted engagement in HIV care is difficult for HIV-positive people, and randomized trials of specific techniques to promote adherence often show small or negligible effects. Understanding what influences decision-making in HIV-positive people in Africa may help researchers and policy makers in the development of broader, more effective interventions and policies.MethodsWe used thematic synthesis and a grounded theory approach to generate a detailed narrative and theoretical model reflecting life with HIV in Africa, and how this influences ART adherence and engagement decisions. We included qualitative primary studies that explored perspectives, perceptions and experiences of HIV-positive people, caregivers and healthcare service providers. We searched databases from 1 January 2013 to 9 December 2016, screened all studies, and selected those for inclusion using purposeful sampling methods. Included studies were coded with Atlas.ti, and we assessed methodological quality across five domains.ResultsWe included 59 studies from Africa in the synthesis. Nine themes emerged which we grouped under three main headings. First, people who are HIV-positive live in a complicated world where they must navigate the challenges presented by poverty, competing priorities, unpredictable life events, social identity, gender norms, stigma, and medical pluralism—these influences can make initiating and maintaining ART difficult. Second, the health system is generally seen as punishing and uninviting and this can drive HIV-positive people out of care. Third, long-term engagement and adherence requires adaptation and incorporation of ART into daily life, a process which is facilitated by: inherent self-efficacy, social responsibilities, previous HIV-related illnesses and emotional, practical or financial support. These factors together can lead to a “tipping point”, a point in time when patients choose to either engage or disengage from care. HIV-positive people may cycle in and out of these care states in response to fluctuations in influences over time.ConclusionThis analysis provides a practical theory, arising from thematic synthesis of research, to help understand the dynamics of adherence to ART and engagement in HIV care. This can contribute to the design of service delivery approaches, and informed thinking and action on the part of policy makers, providers, and society: to understand what it is to be HIV-positive in Africa and how attitudes and the health service need to shift to help those with HIV lead ‘normal’ lives.

‘Only twice a year’: a qualitative exploration of 6-month antiretroviral treatment refills in adherence clubs for people living with HIV in Khayelitsha, South Africa

“…The frequency of ART visits was a significant stress and in their experience of 2-month refills, patients reported finding ways around their visits that did not jeopardise other obligations. Patients live in complicated worlds that require navigation of competing priorities, 22 and if a choice has to be made, life commitments may be prioritised at the expense of ART. Six-month refills helped to overcome this tension by reducing the impact of many previously described barriers to engagement with the health system, such as travel, stigma, inconvenience of appointments, changes to routine and being busy preventing attendance.…”

Incidence and predictors of loss to follow up among adult HIV patients on antiretroviral therapy in University of Gondar Comprehensive Specialized Hospital: A competing risk regression modeling

“…Different studies showed that LTFU is associated with base line sociodemographic factors like sex [10,16,[22][23][24], age [10,11,13,25,26], educational status [26,27], marital status [25,28,29], occupation [30,31], disclosure status [16,27], distance from the health facility [29], caregiver [32,33] and clinical and treatment related factors like baseline WHO stage [25,34], baseline CD4 count [13,31,35], history of opportunistic infection at enrollment [10], baseline functional status [15,32,[35][36][37], opportunistic prophylaxis [11,13,14,29] and type of ART regimen at start of their medication [23,31].…”

Understanding how community antiretroviral delivery influences engagement in HIV care: a qualitative assessment of the Centralised Chronic Medication Dispensing and Distribution programme in South Africa

“…In a qualitative systematic review of 59 studies regarding long-term ART adherence and engagement in care in Africa, poor clinical services were identified as a major theme, with long waiting times, inflexible services and rigid and demanding policies all leading clients to disengage from care. 14 In our study, CCMDD changed some of the 'materialities' of ART provision, leading to clear practical benefits for clients. Similar findings have been reported in qualitative assessments of community adherence clubs in Mozambique, Kenya, Malawi, Zimbabwe and South Africa, which found reductions in clinical visits, waiting times and transport costs for clients.…”