Jak osoby z epilepsją podejmują decyzje o ujawnianiu lub ukrywaniu choroby - badanie doświadczeń pacjentów z napadami uogólnionymi
Phenomenological insights into disclosure and concealment decision-making among people with epilepsy experiencing generalized tonic-clonic seizures
W skrócie
Badanie pokazuje, jak osoby z epilepsją podejmują trudne decyzje dotyczące powiedzenia innym o swojej chorobie. Okazało się, że wybór między ujawnieniem a ukryciem epilepsji zależy od wielu czynników, takich jak strach przed uprzedzeniami, chęć przywrócenia sobie poczucia kontroli oraz pogrupowanie ludzi na tych zaufanych i niezaufanych. Ta decyzja często stanowi większy problem psychiczny dla pacjentów niż same napady i wymaga wsparcia, które wykracza poza samo leczenie objawów.
Oryginalny abstract (angielski)
AIM: This study aimed to elucidate the nature and structure of the decision-making experiences surrounding illness disclosure and concealment among people with epilepsy (PWE) who have experienced generalized tonic-clonic seizures (GTCS). METHODS: Giorgi's descriptive phenomenological method was employed. Data were collected between March and May 2025. A total of eight participants were included in the study. RESULTS: The decision-making experiences of PWE who experience GTCS comprised four essential common constituents: (1) building personal prejudices upon long-standing biases, (2) prioritization of concealing seizures and regaining physical control, (3) realization that unfamiliar realities coexist with ordinary life that must be lived, and (4) classification of relationships through disclosure decisions. CONCLUSIONS: This study offers a new perspective on illness disclosure decision-making among PWE with GTCS, highlighting its existential significance beyond information management. The findings indicate that disclosure or concealment is an ongoing, context-dependent process of relational classification through which participants seek to construct safe and protective social spaces. These decisions imposed a persistent psychological burden that often outweighed seizure symptoms and prompted reflection on identity and perceptions of epilepsy. Overall, the findings underscore the need for nursing care that extends beyond symptom management to support patients' identities, social roles, and disclosure-related decision-making.