MedicineSociology

Ziyi Xie, Kinglun Ngok, Zhenjie Yang, Zhizhuang Duan

2026.5.1SOCIAL SCIENCE & MEDICINE

DOI: 10.1016/j.socscimed.2026.119355

Abstract

Existing studies have largely framed people living with HIV (PLHIV) medication decisions as outcomes shaped by relatively stable factors and have conceptualized health information literacy (HIL) as a static individual-level capacity. Far less attention has been paid to understanding it as a dynamic and evolving process through which PLHIV recalibrate their decisions across different stages of treatment. This study therefore seeks to examine how PLHIV, in the course of ongoing treatment, continuously construct, appraise, and adjust their medication decisions on the basis of HIL. This study adopted a constructivist grounded theory approach and conducted semi-structured interviews with 28 PLHIV in China undergoing antiretroviral therapy (ART) with diverse medication experiences to develop a theoretical model of the dynamic generation of HIL within ART practice, revealing that PLHIV medication decision-making is a dynamic process that evolves alongside HIL. Throughout this process, PLHIV continuously acquire and appraise information from multiple sources, including healthcare professionals, peer communities, online platforms, and their own medication experiences, and accordingly adjust their decisions. Medication decision making is both the outcome of PLHIV acquisition, appraisal, and application of relevant information through HIL and a process through which HIL itself is constructed. Medication decision making among PLHIV is not a one-time act; it is a long-term practice of continual reflection and re-evaluation throughout the treatment process, driven by the dynamic recalibration of HIL. This study advances understanding of the relationship between HIL and treatment decision making in chronic illness contexts and provides empirical evidence for optimizing medication support for PLHIV.

Citation format

XIE, Ziyi, et al. From information receiver to knowledge constructor: The dynamic construction of health information literacy in treatment practice among people living with HIV. SOCIAL SCIENCE & MEDICINE, 2026, 402: 119355.