Expectations of perfect adherence: a qualitative study to explore treatment failure among Malawian adolescents living with HIV
*Rose Burns1, Denview Magalasi2,Thandikile Zimba2,Thokozani Kuala3, Philippe Blasco4, Elisabeth Szumilin4, Birgit Schramm1, Estelle Pasquier4, Alison Wringe5
1Epicentre, Paris, France; 2Médecins Sans Frontières (MSF), Chiradzulu, Malawi; 3Ministry of Health, Lilongwe, Malawi; 4MSF, Paris, France; 5London School of Hygiene and Tropical Medicine, London, UK
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Introduction
Malawi continues to be heavily affected by the HIV epidemic. MSF and Malawi’s Ministry of Health operate an HIV project at the district hospital and 10 decentralized health facilitiesin Chiradzulu, a rural district where 28% of adolescent patients have a viral load ≥1000 copies/mL.This qualitative study examined howcaregivers and health providers discuss adherence, including the content and delivery of messages, and impact on adolescents’ capacity to manage their treatment.
Methods
In-depth interviews were conducted with adolescents living with HIV (n=16), caregivers (n=16), health workers (n=6), and influential community members (n=7). We used participatory learning and action tools tohold group sessions with adolescents living with HIV (n=2) and adolescents with unknown HIV status (n=6). Observations were made in health facilities and the community. Interviews were audio-recorded, transcribed, translated, coded inductively, and analysed thematically.
Ethics
This study was approved by the following Ethics Review Boards:National Health Sciences Research Committee (NHSRC) of Malawi; French Committee for protection of individuals (Comité de Protection des Personnes); London School of Hygiene and Tropical Medicine.
Results
Most adolescents reported difficulties taking ART as prescribed, and expectations of strict adherence influenced adolescents’ adherence intentions. Adolescents were often simply told by health workers to take pills atexactly the same time every day forever.Health workers threatened dire consequences and dealt out punishments,including additional pill-counts and short appointment spacing,for failure to follow treatment instructions, undermining opportunities to discuss adherence challenges like inadequate caregiver support and pill-taking outside the home in social situations and transient living situations. Givenlittle opportunity to make sense of their status and its consequences, some adolescents appeared to comply with adherence rules while others responded by secretly throwing away drugs or openly refusing to take them.
Conclusion
Expectations of perfect adherence, reinforced by threats and punishment, resulted in adolescents withholding from health workersand caregivers information on adherence challenges. Health worker-initiated discussions should explicitly recognise possible disruptions to pill-taking and clarify margins of error regarding precision of timing, and accurately convey the consequences of missed doses. Household-centred approaches and youth-friendly health services could create safe spaces for adolescents to engage in dialogue about HIV and develop realistic strategies for pill-taking. Limitationsinclude those pertaining to qualitative methodology, such as the reluctance of participants to discuss socially undesirable behavior, like suboptimal adherenceor poor relations with patients.
Conflicts of interest
None declared.