An international team of researchers have carried out a review of the evidence examining what influences people who are HIV positive to go to health services and then stay on antiretroviral drugs in Africa.
Research led by the Liverpool School of Tropical Medicine’s (LSTM’s) Professor Paul Garner, used advanced methods of thematic synthesis to examine over 59 studies carried out in Africa, extracting key messages from the qualitative research. Garner said:
“We wanted to bring together the mass of research exploring what influences people taking and continuing to take antiretroviral drugs. Much has been achieved by governments, donors, NGOs and the World Health Organisation in ensuring that people have access to these life-saving treatments but our review offers – for the first time – a more comprehensive understanding of the influences to treatment seeking and adherence to help health workers design approaches to keep people on their meds.”
Looking at the evidence the team identified nine themes impacting on adherence and treatment seeking which they grouped under three main headings. The first of these was the acknowledgement that people who are HIV-positive often must navigate the challenges presented by external issues such as poverty, unpredictable life events and stigma which can influence initiating and maintaining antiretroviral therapy (ART).
Secondly, the health system is generally seen as punishing and uninviting, which can drive people out of care. Thirdly, long-term engagement requires adaptation and incorporation of ART into daily life, which is a process facilitated by factors including inherent self-efficacy, social responsibilities, previous HIV-related illness and emotional, practical or financial support.
Dr Ingrid Eshun-Wilson, lead author on the paper, who carried out the work whilst based at the Centre of Evidence-Based Healthcare, Stellenbosch University said: “The mix of all these factors happen over time, so there appears to be a tipping point when patients choose to either engage or disengage from care, with HIV-positive patients potentially cycling in and out of these care states in response to fluctuations in influences over time.”
The team hope that their work 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.
“Our review goes beyond presenting barriers and facilitators such as cost and distance from care, which are well known.” Continued Eshun-Wilson: “We describe broadly how external influences and personal motivation interact and drive ART adherence and engagement decisions and presents a model for understanding why people do what they do.”
Objective: Adherence 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.
Methods: We 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.
Results: We 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.
Conclusion: This 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.
Ingrid Eshun-Wilson, Anke Rohwer, Lynn Hendricks, Sandy Oliver, Paul Garner