Doświadczenia młodych pacjentów z oporną epilepsją w samodzielnym zarządzaniu chorobą: badanie jakościowe
Self-management experience of young patients with refractory epilepsy: A qualitative study
W skrócie
Badanie pokazuje, że młodzi pacjenci z epilepsją oporną na leki (czyli taką, która nie reaguje dobrze na standardowe leczenie) mają trudności w samodzielnym zarządzaniu swoją chorobą. Pacjenci zmagają się z brakiem kontroli nad napadami, negatywnymi emocjami jak depresja i lęk, problemami z pamięcią, ograniczeniami w codziennym życiu i trudnościami społecznych. Autorzy rekomendują, aby wsparcie dla tych pacjentów obejmowało nie tylko instrukcje dotyczące przyjmowania leków, ale przede wszystkim pomoc w radzeniu sobie z emocjonalnym i poznawczym obciążeniem choroby.
Oryginalny abstract (angielski)
BACKGROUND: Refractory epilepsy is a chronic and drug-resistant form of epilepsy. Self-management plays a vital role in improving the quality of life, physical and mental health, and prognosis of patients with epilepsy. However, poor self-management among young patients with refractory epilepsy affects the control of this disease. Existing studies have given limited attention to patients' subjective experiences. OBJECTIVE: To explore the lived experiences of self-management among young patients with refractory epilepsy and to inform future research on interventions for this population. DESIGN: A qualitative descriptive design was employed. SETTING(S): Our research was conducted at the epilepsy center of a tertiary hospital in Hangzhou, China between September 2025 and November 2025. PARTICIPANTS: 12 young patients (aged 21-37 years) diagnosed with refractory epilepsy. METHODS: Semi-structured, face-to-face interviews were conducted. Participants were purposively sampled to ensure maximum variation in demographic and clinical characteristics. The study adhered to the Consolidated Criteria for Reporting Qualitative Research. RESULTS: A total of 12 young patients with refractory epilepsy were interviewed, the mean age was 29.25 years (range 21-37), and the mean disease duration was 11.8 years (range 3-24). Five themes were identified: (1) struggle between self-control and impulse (tension between control efforts and impulsive reactions); (2) Illness perceptions and coping behaviors (perception ambiguity, information seeking); (3) Lifestyle changes (limited daily activities and social participation); (4) Negative emotional experiences (depression, anxiety, shame); (5) Severe cognitive burden (memory decline, attentional difficulties, and cognitive overload) CONCLUSIONS: Self-management among young patients with refractory epilepsy is a complex, dynamic process shaped by the interplay of self-control capacity, illness perceptions, emotional distress, lifestyle constraints, and cognitive burden. Approaches focused solely on behavioral adherence are insufficient. Future self-management support should adopt a patient-centered, integrative framework that addresses emotional and cognitive vulnerabilities alongside behavioral guidance, to enhance engagement, resilience, and overall quality of life.