Decision-Making Processes and Illness Experiences among People with Chronic Hepatitis B Who Discontinued Oral Nucleos(t)ide Analogue Therapy without Medical Advice: A Qualitative Descriptive Study

Abstract

Objective: This study aimed to investigate how people with chronic hepatitis B make decisions, experience illness, and perceive support needs when they discontinue oral nucleos(t)ide analogue therapy without specialist assessment or medical guidance. Methods: We conducted a qualitative descriptive secondary analysis based on bedside semi-structured interview recordings. These interviews were originally collected in the infectious diseases and hepatology wards of a Chinese tertiary hospital between April and May 2026. From nine substantive transcripts, we screened and included seven interviews; two were excluded—one because prior oral antiviral exposure could not be confirmed, and another because the participant repeatedly denied any treatment interruption. Data analysis followed inductive qualitative content analysis, with analytic priority deliberately given to spontaneous narratives elicited before the delivery of health education. We interpreted interviewer prompts, family contributions, and negative cases with appropriate caution. Results: Five interconnected themes emerged: 1) Underestimation of risk driven by an illusion of clinical stability; 2) Self-directed trade-offs influenced by treatment burden, medication concerns, and expectations regarding alternative therapies; 3) Insufficient specialist decision support and family involvement; 4) An asymptomatic interval that paradoxically reinforced continued discontinuation and delayed help-seeking; and 5) Reconstruction of treatment beliefs only after severe clinical deterioration. These experiences traced a dynamic pathway: perceived stability, self-directed trade-offs, disruption of support, asymptomatic reinforcement, and ultimately, crisis-driven cognitive reconstruction. Con clusions: Discontinuing therapy without medical advice, as our data show, was rarely a simple matter of forgetting to take a pill. It instead reflected an interplay of misconceptions about disease control, the psychological weight of long-term therapy, beliefs in alternative treatments, gaps in professional and family support, and delayed somatic feedback. For nurses, these findings underscore the need to explicitly communicate that viral suppression is not equivalent to cure, to co-develop scenario-based medication continuity plans, to appropriately engage families, and to ensure proactive post-discharge follow-up.