Peer-reviewed article

Beyond seizure control: A qualitative study on the behavioural profiles of self-management in adolescents with epilepsy in western China.

Zhang N, Li S, Wu L, Xia S, Cui C · 22 Jul 2026

Abstract

Purpose Adolescents with epilepsy (AWEs) face a complex mix of medical, cognitive, and psychosocial challenges, leading to highly heterogeneous self-management behaviors. This study aimed to identify distinct engagement patterns among AWEs by applying a persona‑building method to qualitative data, thereby providing a theoretical basis for tailored transitional interventions. Methods A qualitative descriptive study was conducted from August to December 2025 in the neurology ward and outpatient department of a tertiary children's hospital in Southwest China. Maximum variation purposive sampling was used to recruit 28 AWEs aged 10-19 years. Semi-structured interviews, informed by the patient participation framework, explored self-management behaviors. Data were analyzed through an integrated inductive‑deductive approach. The identified behavioral characteristics were synthesized into distinct self‑management profiles and visualized via personas and summary tables. Results Four self-management engagement patterns emerged as context-dependent configurations, not fixed traits: (1) Passive-dependent, lacking knowledge and motivation, reliant on caregivers; (2) Limited-initiative, independently executing core routines but passive in information-seeking, decision-making, and emotional expression; (3) Ambivalent-hesitant, possessing capacity and desiring autonomy yet hesitating to act for fear of mistakes; (4) Proactively engaged, actively seeking and appraising information, participating in decisions, planning and executing self-care, and openly expressing emotions and seeking support. Each pattern calls for tailored intervention strategies targeting specific behavioural dimensions. Conclusion Recognizing the four distinct self-management profiles among AWEs enables clinicians to develop tailored, stepped intervention strategies that align with each patient's behavioral characteristics, potentially improving early risk identification, transitional care coordination, and long-term quality of life.