Emotional and Psychological Effects of Dysphagia: Validation of the Jugendwerk Dysphagia Emotion and Family Assessment (JDEFA)

INTRODUCTION: Patients suffering from swallowing disorders are experiencing emotional effects like anger, anxiety, and sadness. This may be affecting patient–therapist relation and family functioning. To assess emotional reaction and their influence on family systems, we developed a 55-item questionnaire based on the Atlas of Emotion and the Calgary Family Intervention Model. METHODS: We recruited more than 160 participants to validate an online survey, namely the Jugendwerk Dysphagia Emotion and Family Assessment Score (JDEFA). Forty-Nine health care workers, patients, and family members completed the survey and provided additional comments regarding interactions of emotions and dysphagia. Analysis was accomplished by non-parametric tests and principal component analyses with Varimax rotation. Additionally, we accomplished a qualitative content analysis taking a phenomenological single-coder approach. RESULTS: Analysis revealed a Cronbach’s Alpha of 0.93. Using primary component analyses, justified by a Kaiser–Meyer–Olkin value of 0.81, we identified two main factors (emotion and family). Patients experienced sadness and anger more often than health care providers, whereas family members felt anxiety even more often. Our qualitative analysis revealed 20 themes (7 for anger, 2 enjoyment, 4 sadness, 3 anxiety, 2 disgust, 1 shame, and 1 punishment). Predominantly, the fear of choking was mentioned by patients, whereas professionals reported about the fear of making mistakes. CONCLUSION: The JDEFA is a valid and reliable testing tool for the assessment of swallowing disorders concerning emotional aspects and family functioning. Both factors have a significant role in dysphagia and evaluations should go along with functional assessments and psychological scores for a holistic understanding of swallowing disorders.