Communication and swallowing changes, everyday impacts and access to speech-language pathology services for people with Parkinson's disease: An Australian survey

Abstract

Purpose

To investigate people with Parkinson's disease (PwPD): 1) self-reported communication and swallowing difficulties due to Parkinson's disease (PD), 2) participation and psychosocial impacts of these difficulties and 3) experience with and access to speech-language pathology (SLP) services.

Method

A cross-sectional mix-methods survey was conducted using nonprobability, purposive sampling for recruitment. An inclusion criterion was that participants needed to have self-reported communication and/or swallowing changes due to PD. Descriptive statistics and thematic analysis were utilised.

Result

All of the 78 PwPD who participated reported changes to their communication (97%) and/or swallowing (93%). A diverse range of participation restrictions was found in social, recreational, vocational and everyday living activities. Adverse emotional impacts including frustration, loss of self-confidence, depression and isolation were reported due to these changes. Only 59% of our sample had accessed SLP services. The most common reason for PwPD not accessing services was that neither their general practitioner nor neurologist had referred them to SLP. The majority of PwPD wanted to access SLP at some point in the future. Wide variability in the SLP services provided was evident. Most of the PwPD who had received SLP support wanted further ongoing management.

Conclusion

This study provided insight into the everyday impacts of communication and swallowing changes experienced by PwPD, and the gap between service supply and demand.

Keywords:

• Parkinson's disease
• speech language pathology
• communication
• swallowing

Acknowledgements

The authors wish to thank the participants for contributing their time to this study, as well as the Parkinson’s disease organisations who distributed the survey (Parkinson’s QLD Inc., Parkinson’s VIC, Parkinson’s TAS, Parkinson’s SA, Parkinson’s WA and NT).

Disclosure statement

No potential conflict of interest was reported by the author(s).

Supplementary material

Supplemental data for this article can be accessed at http://dx.doi.org/10.1080/17549507.2020.1739332