Perspectives on Airway Protection: A Mixed Methods Investigation in People With Parkinson's Disease.

Abstract

Purpose: Disordered airway protection, including both disordered swallowing (dysphagia) and disordered cough (dystussia), is highly prevalent among persons with Parkinson's disease (pwPD). A comprehensive understanding of the perspectives of pwPD as it relates to airway protection is currently lacking and is necessary to provide relevant, person-centered care. Therefore, this study used a parallel-convergent mixed methods design to quantitatively and qualitatively investigate pwPD's perspectives on airway protection.

Method: Thirteen pwPD were consecutively recruited from a cough training trial. Quantitative data (obtained from the Swallowing Quality of Life questionnaire [SWAL-QOL] and the modified Canadian Occupational Performance Measure [mCOPM]) and qualitative data (obtained from semistructured interviews) were integrated to define participant knowledge, perceived importance, perceived performance, and psychosocial implications of airway protective deficits.

Results: All participants reported basic knowledge about airway protection, which centered around four themes-physiology, the interconnectedness between bulbar functions, danger, and impaired airway protection as a consequence of PD. All participants believed that airway protection was important (median mCOPM score = 10), with three primary themes related to importance-survival, anticipated future decline, and maintaining oral intake. We identified a split between participants who perceived themselves to have "a swallowing problem" and those who did not, with three themes relating to perceived impairment-use of eating strategies, unpredictable and inconsistent symptom experience, and vigilance required to mitigate symptoms. Psychosocial ramifications centered on three key themes that aligned with three SWAL-QOL domains-overall burden, fear of future decline, and social embarrassment.

Conclusion: The integration of quantitative and qualitative data in this study highlights the importance of considering unique patient perspectives to develop personalized and relevant management plans for each unique pwPD that integrate objective and clinical findings with patient priorities and needs.

Supplemental material: https://doi.org/10.23641/asha.28489280.