‘Staying alive’ with antiretroviral therapy: a grounded theory study of people living with HIV in Peru

BACKGROUND: To achieve an optimal quality of life through chronic disease management, people living with HIV (PLHIV) must adhere to antiretroviral therapy (ART). ART has been available throughout Peru since 2004 without cost in all regions; yet only 60% (43 200) of PLHIV receive ART and 32% are virally suppressed. Despite the low adherence, little is known about the experience of PLHIV with ART adherence in the context of Latin America. METHODS: A constructivist grounded theory design was used to understand the ART adherence experiences of PLHIV in Northern Peru. Unstructured interviews were conducted with 18 participants resulting in theoretical saturation. All interviews were recorded, immediately transcribed and analysed concurrently with data collection using constant comparative analysis with Atlas.ti (V.8) software. Rigour was maintained through openness, reflexivity, audit trail, memo writing, debriefings, member checks and positionality. RESULTS: The core category ‘staying alive’ emerged through the interaction of four categories, including: (1) overcoming barriers; (2) working with the healthcare team; (3) tailoring self-care strategies; and (4) appreciating antiretrovirals. Adherence is not a spontaneous outcome, instead, the surprise of HIV diagnosis transitions to living with HIV as a chronic disease. The healthcare team helps PLHIV realise ART is their life source by enhancing, supporting and facilitating self-care and overcoming barriers. CONCLUSION: Adherence emerges from experiential learning as PLHIV recognised ART as their life source in balance with their desire to continue living a normal life. Social support and healthcare team interventions help PLHIV implement tailored self-care strategies to overcome personal, social, and structural barriers to adherence. Healthcare professionals need to recognise the challenges confronted by PLHIV as they learn how to continue living while trying to stay alive.