Factors impacting antiretroviral therapy adherence among human immunodeficiency virus–positive adolescents in Sub-Saharan Africa: a systematic review

Highlights

• Antiretroviral therapy (ART) adherence in HIV-positive adolescents in Sub-Saharan Africa is suboptimal.

• Stigma was found as the main barrier to ART adherence, followed by ART side-effects, lack of assistance and forgetfulness.

• Facilitators included caregiver support, peer support groups and knowledge of HIV status.

• ART adherence interventions for adolescents should include religious leaders and schools to change negative social attitudes.

Abstract

Objectives

Eighty-two percent of human immunodeficiency virus (HIV)–positive adolescents live in Sub-Saharan Africa (SSA). Despite the availability of antiretroviral therapy (ART), adherence levels are suboptimal, leading to poor outcomes. This systematic review investigated factors impacting ART adherence among adolescents in SSA, including religious beliefs and intimate relationships.

Methods

A systematic review was conducted between June and August 2016 using eight electronic databases, including Cochrane and PubMed. Published, ongoing and unpublished research, conducted in SSA from 2004 to 2016, was identified and thematic analysis was used to summarise findings.

Results

Eleven studies from eight SSA countries, published in English between 2011 and 2016, reported on factors impacting ART adherence among adolescents living with HIV (ALHIV). Forty-four barriers and 29 facilitators to adherence were identified, representing a complex web of factors. The main barriers were stigma, ART side-effects, lack of assistance and forgetfulness. Facilitators included caregiver support, peer support groups and knowledge of HIV status.

Conclusions

Stigma reflects difficult relations between ALHIV and their HIV-negative peers and adults. Most interventions target only those with HIV, suggesting a policy shift towards the wider community could be beneficial. Recommendations include engaging religious leaders and schools to change negative societal attitudes. Limitations of the review include the urban settings and recruitment of predominantly vertically infected participants in most included studies. Therefore, the findings cannot be extrapolated to ALHIV residing in rural locations or horizontally infected ALHIV, highlighting the need for further research in those areas.

Introduction

Acquired immunodeficiency syndrome is the main reason for death in African adolescents aged 10–19 years.¹ Out of 2 million human immunodeficiency virus (HIV)-positive adolescents worldwide, 82% live in Sub-Saharan Africa (SSA).² Adolescents acquire HIV either vertically from their mother or horizontally through sexual contact or risky behaviour.³

Although still incurable, HIV in SSA has changed from a ‘killer disease’ to a treatable chronic condition since paediatric antiretroviral therapy (ART) was introduced in SSA in 2004,⁴ leading to great improvements in survival and life quality among adolescents.⁵ But effective treatment outcomes depend on optimal ART adherence,⁶ where adherence refers to an individual's capability to take drugs at recommended times.⁷ In addition, ART dramatically reduces rates of onward HIV transmission.⁸ Public health strategies today are building on this to contain the epidemic. All HIV-positive pregnant women are given ART to prevent infection of babies.⁹ Countries are introducing ‘Test and Treat’ policies where all patients testing HIV-positive immediately start treatment.⁹ But low infectivity depends on optimal ART adherence, classified as at least 95% of doses expected to be used.¹⁰ Poor ART adherence can lead to treatment failure, disease progression, increased risk of transmission¹¹ and healthcare costs.12, 13

According to Gulick,¹⁴ adherence varies over time, making frequent adherence assessments crucial. Assessments are performed either subjectively through patient or caregiver reports or objectively: pharmacologically through pill count or electronic measurement and physiologically through viral load tests. All methods have limitations and can lead to inaccurate estimates.¹⁵ Pill counts can be modified; verbal reports present an easily biased subjective result, and frequent viral load tests are often unaffordable in developing countries.¹⁶ Combining methods could improve accuracy.¹⁷

Today, HIV in SSA is a public health challenge: how to get millions of people in rural areas with poor health infrastructure to take daily medicines.¹⁸ The challenge is greatest for adolescents undergoing the physical, social and psychological changes of sexual maturity. Being HIV-positive adds to the complexity of difficulties faced by this group.¹⁹ While data on ART coverage and adherence are limited,¹⁰ studies suggest less than half of adolescents living with HIV (ALHIV) know their status and that adherence levels are suboptimal.10, 20 One study reported only 20.7% of adolescents achieve good adherence.²⁰ ART adherence levels are poorer in ALHIV compared to adults.21, 22

The factors impacting ART adherence can be categorised according to the patient, the medication, the caregiver and the health system.²³ Multiple factors are involved which may vary according to age, context, culture, health system, education and caregiver support.²⁴ Some factors may be temporary, others permanent. Poverty, stigma, lack of social support, family disintegration, drug side-effects, weak health systems and disclosure of HIV status are cited as impacting adolescent ART adherence.25, 26, 27

Disclosure is defined as acquiring knowledge about one's HIV status²⁸ or informing others about one's HIV status.²⁹ Adolescents who do not know why they are taking medicines are more likely to miss doses, and those unable to tell their family and friends of their HIV status may need to hide their treatment, making adherence more difficult.³⁰ Additionally, religious beliefs,³¹ described as ‘the belief in and worship of a superhuman controlling power’,³² and intimate relationships³³ may play a role in ALHIV adhering to ART. Often ALHIV hide poor adherence from healthcare providers to avoid rejection.34, 35

With limited resources available, interventions need to be designed to address different contexts and continuously evaluated for effectiveness.²⁵ Agwu and Fairlie³⁶ found that interventions to promote disclosure and counselling facilitate adherence among ALHIV. HIV peer support groups were also mentioned as beneficial.³⁷ However, strategies can only be improved through increased knowledge of the factors impacting ART adherence. Huge resources are spent on viral load tests to assess adherence clinically, but much less on interventions to address root causes of poor adherence.³⁸

Several systematic reviews have been published regarding this topic for different age groups and contexts.39, 40, 41, 42, 43, 44, 45 This study differs from previous reviews by including both quantitative and qualitative data and exclusively within the SSA context, where HIV prevalence is the highest globally.

This systematic review aims to identify factors that enable and impede ART adherence among ALHIV in SSA; to build on the findings of previous reviews, it includes religious beliefs and intimate relationships as factors impacting ART adherence among ALHIV. Additionally, it intends to guide decision-makers involved in HIV programmes, service providers, researchers and the general population, making recommendations to improve adolescent adherence to ART in SSA.