Psychosocial Experiences Associated with Dysphagia and Relevant Clinical Implications Among Adults with Parkinson Disease

Although the psychosocial sequelae of living with dysphagia secondary to Parkinson disease (PD) are described in the literature as challenging, there has been little focus on using this information to influence the design of dysphagia treatment. A more nuanced understanding of the psychosocial experiences of this population may assist clinicians in providing a patient-centered approach to care. Our study was designed to gather insight into the common psychosocial experiences associated with dysphagia in the context of PD. A semi-structured interview consisting of open- and closed items was conducted with 25 individuals from regions across the country with self-reported oropharyngeal dysphagia secondary to PD. Questions were developed using comprehensive stress and coping frameworks that emphasized psychosocial predictors of specific affective reactions (e.g., grief, anxiety, depression), including self-evaluation (e.g., self-identity), coping strategies, social support, personal expectations (including perceived control over symptoms and prognosis), positive experiences, and perceptions of personal growth. Interview responses were subjected to a qualitative analysis and revealed three dominant themes: (1) Recalibration of a PD Diagnosis, (2) Vigilant Caution to Swallowing, and (3) Grieving the Loss of the Communal Meal. Using these data interpretations, we discuss three concepts for speech-language pathologists working with individuals with dysphagia and PD to consider during clinical interactions; these are reframing swallowing vigilance to engagement with mindful eating, using biofeedback to align patient perceptions and swallow physiology, and understanding the consequences of loss (of their former swallowing ability) through grief and growth reactions.