Poza kontrolą napadów: Badanie jakościowe dotyczące sposobów, w jakie nastolatki z epilepsją samodzielnie zarządzają swoją chorobą na zachodzie Chin
Beyond seizure control: A qualitative study on the behavioural profiles of self-management in adolescents with epilepsy in western China
W skrócie
Badacze przeprowadzili rozmowy z 28 nastolatkami z epilepsją, aby zrozumieć, jak radzą sobie z leczeniem i opieką nad sobą. Odkryli cztery różne style postępowania: całkowicie pasywne (polegające na rodzicach), prawie niezaangażowane (wykonujące podstawowe czynności), niezdecydowane (chcące być niezależne, ale boje się błędów) oraz aktywnie zaangażowane (szukające informacji i uczestniczące w decyzjach). Wyniki pokazują, że lekarze powinni dostosować sposób opieki do każdego nastolatka, aby poprawić wyniki leczenia i jakość życia.
Oryginalny abstract (angielski)
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.