Subiektywne podejścia do podejmowania decyzji o ujawnieniu choroby u osób z epilepsją: badanie metodą Q
Subjective typologies of disclosure decision-making among people with epilepsy: A Q methodology study
W skrócie
Badanie analizowało, dlaczego osoby z epilepsją decydują się ujawnić lub ukryć informację o swojej chorobie w różnych sytuacjach społecznych. Naukowcy odkryli trzy główne sposoby myślenia: chęć nawiązania relacji dla bezpieczeństwa, ukrywanie informacji aby uniknąć katastrofy, oraz balansowanie między ochroną siebie a troską o innych. Wyniki pokazują, że decyzje o ujawnieniu choroby zależą od kontekstu i sytuacji, a nie są po prostu dobre lub złe - to naturalny sposób, w jaki osoby z epilepsją radzą sobie w codziennych relacjach.
Oryginalny abstract (angielski)
AIMS: This study aims to identify subjective viewpoints underlying disclosure decision-making among people with epilepsy. DESIGN: Q methodological study. METHODS: This study employed Q methodology to explore subjective viewpoints that shape disclosure and concealment decisions among people with epilepsy. Data were collected from August 2024 to July 2025. A total of 29 individuals with epilepsy participated in the Q-sorting process. The data were analyzed using PQMethod version 2.35, applying principal component analysis followed by varimax rotation. RESULTS: The final analysis included Q-sorts from 27 participants, with two individuals excluded because they did not load significantly on any Q-factor. Three distinct factors were identified, collectively explaining 54% of the total variance: Attracting relationships to secure one's own safety zone; Minimizing catastrophe through information withholding; And balancing self-protection and consideration for others. CONCLUSIONS: The study demonstrated that disclosure-related perspectives are context-dependent and embedded in everyday social environments. The findings highlight that disclosure and concealment are not dichotomous or maladaptive behaviors, but expressions of agency shaped by individuals' lived experiences and social constraints. IMPLICATIONS FOR THE PROFESSION AND PATIENT CARE: This study underscores the need for health professionals to recognize the complex and subjective processes underlying disclosure and concealment among people with epilepsy. It suggests that patient care should be guided by individuals' perspectives and priorities rather than a uniform approach. IMPACT: Applying this framework may enhance health professionals' sensitivity and enable the provision of individualized, empathetic care, potentially improving patient experiences and supporting context-sensitive nursing interventions.