Experiences of Australians Living With Parkinson’s Disease

TL;DR

This study examines the healthcare experiences of Australians with Parkinson’s disease, highlighting challenges in diagnosis, care access, and the importance of peer support.

Contribution

The study provides new insights into the unique healthcare challenges faced by Australians living with Parkinson’s disease.

Findings

Participants faced difficulties in timely diagnosis and navigating healthcare services.

Peer support networks were found to be crucial for coping and resilience.

Information gaps and poor communication between patients and providers were commonly reported.

Abstract

This study explores the healthcare experiences of Australians with Parkinson’s disease, focusing on healthcare access, symptom management and support networks. Despite the body of research on the experiences of PwPD, there is limited understanding of the specific challenges faced by Australians in accessing and navigating healthcare services. A national survey was conducted, and free‐text responses to an optional open‐ended question were analysed using thematic analysis to identify key themes in healthcare experiences and barriers. Seven themes were identified: Navigating Healthcare, Diagnostic Experiences, Symptom Experience and Management, Optimism and Resilience, Knowledge and Understanding of Parkinson’s Disease, Necessitated Self‐Advocacy, and Community‐Driven Support. Participants reported difficulties in obtaining timely diagnoses, navigating healthcare services and accessing specialised care. Information gaps and inadequate patient–provider communication were also noted. Peer support networks were highlighted as crucial for coping and resilience, with a notable shift away from traditional familial support structures. Findings underscore systemic challenges in healthcare access and communication for Australian PwPD and suggest that enhancing peer support networks and improving care pathways could strengthen disease management and support.

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