RESUMO
Dysphagia is a leading cause of morbidity and mortality among individuals with Parkinson's disease (PD). The primary objectives of the present study were to explore patients' narrative reports focused on what information and evaluation and treatment experiences they identified as they manage dysphagia, and to identify practice patterns relevant to dysphagia management. A secondary objective was to produce an educational resource for this population that addressed their questions about dysphagia. A sample of individuals with oropharyngeal dysphagia secondary to PD (n = 25) across all regions of the United States were interviewed using open- and closed questions and a written questionnaire. Verbatim interview transcripts were interrogated using qualitative content analysis (QCA) with an inductive approach to identify themes from the participants' reported knowledge of dysphagia and experiences with swallowing evaluation and treatment. Authors developed a pamphlet addressing common questions that participants posed in the interviews and conducted a member check to revise it with their feedback. Most participants reported having been asked about their swallowing function by a healthcare professional. 60% of the sample reported having had a swallowing evaluation. Only 20% (5/25) of participants reported having completed swallowing therapy. Some participants did not know that swallowing therapy exists. Nearly all participants reported having a strong desire to know more about dysphagia and preferred a pamphlet as a resource format. Few of the study participants had received swallowing therapy, and nearly all participants were eager to learn about the nature of dysphagia, its progression, and treatment options. Given the physical, emotional, and social ramifications of living with dysphagia, access to swallowing education and treatment needs to be a stronger focus of PD management.
