Caregivers' Knowledge and Experiences in Recognizing and Managing Dysphagia in Patients with Myopathy.

Abstract

Background: Dysphagia is a common complication in myopathy, significantly impacting patients' quality of life (QoL) and overall health. Caregivers play a critical role in identifying and addressing swallowing difficulties in this population. The main purpose of this study was to assess the knowledge and experiences of professional caregivers of patients with myopathy regarding the recognition and management of dysphagia in Cyprus. Methods: The study was designed as an anonymous, cross-sectional descriptive survey and involved 10 professional caregivers of patients with myopathy in Cyprus. Results: The most common dysphagia symptoms reported in myopathy patients were coughing, chewing difficulties, choking on fluids, and challenges with swallowing boluses. Only one caregiver reported difficulty managing swallowing issues, particularly in cases of reluctance to eat. Approximately 60% had received relevant training, primarily through workplace programs. Overall, caregivers did not perceive dysphagia as a significant burden. Conclusions: Dysphagia is a prevalent phenomenon in myopathy. The study reveals that caregivers of myopathy patients, regardless of their professional backgrounds, face hidden challenges in managing complex neurogenic dysphagia. They often misjudge the severity of the condition and overestimate their own competencies. Providing caregivers of patients with myopathy with targeted education would help them effectively manage swallowing difficulties associated with the condition. Encouragingly, our study also suggests that focused dysphagia education could reduce caregiver stress and enhance their overall well-being. Future efforts should concentrate on ensuring access to well-trained professionals, establishing specialized clinics, and promoting education to enhance MND-related dysphagia management and patient care.