"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.Publisher
WileyPubMed ID
32124554Type
ArticleLanguage
enEISSN
1758-2652ae974a485f413a2113503eed53cd6c53
10.1002/jia2.25459
Scopus Count
Collections
Related articles
- "The sky is the limit": adhering to antiretroviral therapy and HIV self-management from the perspectives of adolescents living with HIV and their adult caregivers.
- Authors: Denison JA, Banda H, Dennis AC, Packer C, Nyambe N, Stalter RM, Mwansa JK, Katayamoyo P, McCarraher DR
- Issue date: 2015
- High self-reported non-adherence to antiretroviral therapy amongst adolescents living with HIV in Malawi: barriers and associated factors.
- Authors: Kim MH, Mazenga AC, Yu X, Ahmed S, Paul ME, Kazembe PN, Abrams EJ
- Issue date: 2017 Mar 30
- Living situation affects adherence to combination antiretroviral therapy in HIV-infected adolescents in Rwanda: a qualitative study.
- Authors: Mutwa PR, Van Nuil JI, Asiimwe-Kateera B, Kestelyn E, Vyankandondera J, Pool R, Ruhirimbura J, Kanakuze C, Reiss P, Geelen S, van de Wijgert J, Boer KR
- Issue date: 2013
- The Supporting Adolescent Adherence in Vietnam (SAAV) study: study protocol for a randomized controlled trial assessing an mHealth approach to improving adherence for adolescents living with HIV in Vietnam.
- Authors: DeSilva M, Vu CN, Bonawitz R, Hai LT, Van Lam N, Yen LT, Gifford AL, Haberer J, Linh DT, Sabin L
- Issue date: 2019 Feb 28
- Evaluating a multi-component, community-based program to improve adherence and retention in care among adolescents living with HIV in Zimbabwe: study protocol for a cluster randomized controlled trial.
- Authors: Mavhu W, Willis N, Mufuka J, Mangenah C, Mvududu K, Bernays S, Mangezi W, Apollo T, Araya R, Weiss HA, Cowan FM
- Issue date: 2017 Oct 20