“We give them threatening advice…”: expectations of adherence to antiretroviral therapy and their consequences among adolescents living with HIV in rural Malawi

Abstract

Introduction Many adolescents living with HIV in sub‐Saharan Africa struggle to achieve optimal adherence to antiretroviral therapy (ART), but few studies have investigated how their treatment‐taking decisions are influenced by their social interactions with providers, caregivers and community leaders. This study aims to explore the narratives that define expectations of adherence to ART among adolescents living with HIV in a rural Malawian setting. Methods Overall, 45 in‐depth interviews were conducted in 2016 with adolescents living with HIV, caregivers, health workers and community leaders, and four group sessions using participatory tools were undertaken with adolescents. Interviews and group sessions were audio‐recorded, transcribed and translated into English. Data were coded inductively and analysed thematically. Results Adolescents were given strict behavioural codes around optimal treatment adherence, which were often enforced through encouragement, persuasian and threats. In HIV clinics, some staff supported adolescents with broader concerns relating to living with HIV, but other measures to address sub‐optimal adherence in HIV clinics were perceived by patients as punitive, including pill‐counts and increased frequency of clinic visits. Community leaders felt responsible for young peoples' health, sometimes attempting to influence their treatment‐taking by threatening to withdraw services, or to publically “out” those deemed to be non‐adherent. At home, discussions with adolescents about HIV were often limited to dose reminders, and some caretakers resorted to physical punishment to ensure adherence. While some adolescents complied with strictly‐enforced adherence rules, others demonstrated resistance by hiding missed doses, secretly throwing away drugs, or openly refusing to take them. Conclusions The potential of young people to adhere to their ART may be undermined by restrictive messages and punitive approaches to enforce and control their engagement with treatment at home, in the clinic and in the wider community. Interventions should focus on creating safe spaces for adolescents to speak frankly about the adherence challenges that they face and support for caregivers including home‐based interventions.

The secret life of young adolescents living with HIV in northern Mozambique - a mixed methods study

“…These findings are also consistent with studies in South Africa [29]. However, as found in a study in Malawi [23], caregiver conversations about ART were often brief and directive and they rarely engaged the ALHIV in conversations about HIV infection transmission, but rather reinforced that HIV status was something best kept in secret. Nevertheless, the central role that caregivers play in adherence support in young adolescents suggest that targeting programs to this young population can provide an important opportunity for early intervention.…”

“…The need for keeping HIV status a secret is understood as critical to preclude abandonment and humiliation from those close to them --intimate friends, and family members --as well as the general community. Secrecy around HIV infection in adolescents is an issue that has been documented in studies with ALHIV in sub-Saharan African countries such as Zambia [18], Kenya [19,20], Tanzania [21], South Africa [22] and Malawi [23] but also in Europe and the United States [24] .…”

Monitoring adherence to antiretroviral therapy among adolescents in Southern Uganda: comparing Wisepill to Self‐report in predicting viral suppression in a cluster‐randomized trial

“…Although these measures perform well in adults [11,12], their performance in ALHIV is variable. For example, in young adolescents, the responsibility of ensuring adherence lies on both the ALHIV and the caregiver [13][14][41][42]. Therefore, using SR to study adherence in this age group requires consideration of both the ALHIV and the caretaker.…”

Truth, Deception, and Coercion; Communication Strategies Used by Caregivers of Children with Perinatally Acquired HIV During the Pre-Disclosure and Post-Disclosure Period in Rural Communities in South Africa

“…The punitive strategies used by caregivers to enforce adherence may undermine the children’s pill taking and should be replaced by interventions that help them to incorporate routine pill taking in their daily lives. 43 …”