Translation, cross-cultural adaptation, and validation of the Jugendwerk Dysphagia Emotion and Family Assessment (JDEFA) in Persian

OBJECTIVE: Dysphagia adversely impacts physical and emotional well-being in patients with neurological diseases and their family members. Given the detrimental emotional consequences of dysphagia for both patients and their family members, the imperative for a standardized assessment tool aiming to effectively enhance treatment outcomes is evident. The present study focused on the translation process, cross-cultural adaptation, and validation of the Jugendwerk Dysphagia Emotion and Family Assessment (JDEFA) questionnaire in Persian. The P-JDEFA assesses familial and emotional aspects of dysphagia among patients and their family members. METHODS: The questionnaire was translated into Persian according to World Health Organization guidelines. We recruited 100 participants to validate the P-JDEFA questionnaire. Fifty patients and fifty of their family members completed the survey. Analysis was accomplished by parametric tests including Pearson correlation and independent t tests and construct validity was evaluated by exploratory factor analysis with Varimax rotation. RESULTS: Convergent validity was evaluated using the P-EAT-10. The 48-item questionnaire demonstrated high internal consistency (Cronbach's alpha = 0.91), and two distinct factors, "emotion" and "family", explained 47.7% of the total variance. Significant correlations were found between psycho-emotional symptoms, dysphagia severity, and neurologic disorder duration. Patients experience increased feelings of sadness, anxiety, and punishment compared to family members. CONCLUSION: It was evident that psycho-emotional difficulties are common in neurological patients with dysphagia and their family members. Our research provides a means for comprehensive evaluation of the psycho-emotional aspects of dysphagia within the framework of patient, family and health professional interactions in treatment planning and future investigations.