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Erschienen in: Dysphagia 2/2022

04.04.2021 | Original Article

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

verfasst von: Stefan Bushuven, Isabell Niebel, Johanna Huber, Paul Diesener

Erschienen in: Dysphagia | Ausgabe 2/2022

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ABSTRACT

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.
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Metadaten
Titel
Emotional and Psychological Effects of Dysphagia: Validation of the Jugendwerk Dysphagia Emotion and Family Assessment (JDEFA)
verfasst von
Stefan Bushuven
Isabell Niebel
Johanna Huber
Paul Diesener
Publikationsdatum
04.04.2021
Verlag
Springer US
Erschienen in
Dysphagia / Ausgabe 2/2022
Print ISSN: 0179-051X
Elektronische ISSN: 1432-0460
DOI
https://doi.org/10.1007/s00455-021-10289-1

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