First-Hand Experience of Severe Dysphagia Following Brainstem Stroke: Two Qualitative Cases

Background: Dysphagia has profound effects on individuals, and living with dysphagia is a complex phenomenon that touches essential areas of life. Dysphagia following a brainstem stroke is often more severe and the chances of spontaneous recovery are less likely as compared with dysphagia following a hemispheric stroke. Objective: To explore how two individuals with brainstem stroke experienced severe dysphagia during their inpatient neurorehabilitation and how they experienced their recovery approximately one month following discharge. Methods: An explorative study was conducted to evaluate the first-hand perspective on severe eating difficulties. A qualitative case study was chosen to collect data during two face-to-face semi-structured interviews. Phenomenological perspectives shaped the interview-process and the processing of data. Results: Analysis of the empirical data generated the following main themes regarding experiences of: (i) the mouth and throat; (ii) shared dining; and (iii) recovery and regression related to swallowing-eating-drinking. Conclusion: Participants expressed altered sensations of the mouth and throat, which affected their oral intake and social participation in meals. Good support for managing and adapting their problems of swallowing, eating, and drinking in daily activities is essential. Knowledge and skills of professionals in relation to dysphagia is a significant requirement for recovery progress in settings within the municipality.