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    Jan 26, 2021
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    "We give them threatening advice…": expectations of adherence to antiretroviral therapy and their consequences among adolescents living with HIV in rural Malawi

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    Burns et al 2020 We give them ...
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    Authors
    Burns, R
    Magalasi, D
    Blasco, P
    Szumilin, E
    Pasquier, E
    Schramm, B
    Wringe, A
    Issue Date
    2020-03-02
    Submitted date
    2020-04-23
    
    Metadata
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    Journal
    Journal of the International AIDS Society
    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
    Wiley
    URI
    http://hdl.handle.net/10144/619657
    DOI
    10.1002/jia2.25459
    PubMed ID
    32124554
    Type
    Article
    Language
    en
    EISSN
    1758-2652
    ae974a485f413a2113503eed53cd6c53
    10.1002/jia2.25459
    Scopus Count
    Collections
    HIV/AIDS

    entitlement

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