ArticleJournal of the International AIDS Society2020
"We give them threatening advice…": expectations of adherence to antiretroviral therapy and their consequences among adolescents living with HIV in rural Malawi.
Article in Journal of the International AIDS Society, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 1 of them a synthesis that pooled it.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
14 citing papers in PubMed, 1 synthesis or guideline pooled it, 17 citations in OpenAlex.
- Pooled it
- Ferric carboxymaltose versus standard-of-care oral iron to treat second-trimester anaemia in Malawian pregnant women: a randomised controlled trial.Lancet (London, England) · 2023Trial
- Monitoring adherence to antiretroviral therapy among adolescents in Southern Uganda: comparing Wisepill to Self-report in predicting viral suppression in a cluster-randomized trial.Journal of the International AIDS Society · 2022Trial
- Perceptions of adolescents and young adults failing antiretroviral therapy on adherence in Gauteng, South Africa.Southern African journal of HIV medicine · 2026Article
- Psychosocial support and HIV-related stigma intervention needs of adolescents living with HIV in southern Ethiopia: insights from adolescents, caregivers, and healthcare providers.Global health action · 2025Article
- Experiences and perceptions on antiretroviral therapy adherence and non-adherence: a scoping review of young people living with HIV in sub-Saharan Africa.BMC public health · 2025Article
- "I can't fail. And my son can't fail.": Caregiver perspectives on supporting youth to self-manage their HIV in Ndola, Zambia.PLOS global public health · 2025Article
- Identifying longitudinal patterns of HIV treatment (dis)engagement and re-engagement from oral histories of virologically unsuppressed persons in Uganda: A thematic trajectory analysis.Social science & medicine (1982) · 2023Article
- Electronic Antiretroviral Therapy Adherence Monitors and Associated Interventions Improve Adolescent-Caregiver Relationships and Self-Efficacy Among Adolescents and Young Adults with HIV in Uganda.AIDS patient care and STDs · 2023Article
- "They test my blood to know how much blood is in my body": the untapped potential of promoting viral load literacy to support adherence and viral suppression among adolescents living with HIV.Journal of the International AIDS Society · 2023Article
- Adherence challenges and opportunities for optimizing care through enhanced adherence counseling for adolescents with suspected HIV treatment failure in Kenya.BMC health services research · 2022Article
- The secret life of young adolescents living with HIV in northern Mozambique - a mixed methods study.BMC public health · 2021Article
- 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.Global pediatric health · 2021Article
- "We give them threatening advice…": expectations of adherence to antiretroviral therapy and their consequences among adolescents living with HIV in rural Malawi.Journal of the International AIDS Society · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 2 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionMany 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.
methodsOverall, 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.
resultsAdolescents 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.
conclusionsThe 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.