‘It would've been nice to know about allied health earlier’: insights from people with Parkinson's disease

Introduction: Allied health interventions can improve impairments and quality of life for people with Parkinson's disease (PwPD). However, allied health services are underutilised, and PwPD encounter barriers when accessing allied health. This study examined the allied health referral patterns of PwPD in New South Wales, Australia, from their perspective.

Methods: Community-dwelling PwPD and their care-partners (CPs) were recruited. Participants completed a questionnaire, two-stage semi-structured interviews and a structured retrospective chart to track their PD journey.

Results: Eighteen PwPD and five CPs participated, including six from culturally and linguistically diverse (CALD) backgrounds, two of whom required an interpreter. The Levesque model of healthcare access was utilised to describe this study's themes. The approachability and appropriateness of allied health services varied, as did participants' ability to perceive the need for services. CALD participants' fluency in English further impacted their perceptions, and they often found traditional medicine more acceptable. Health service availability was limited, particularly when accessing multidisciplinary care and in regional areas. Participants who lived alone or did not drive had limited ability to reach services. A lack of affordable services and limited ability to pay contributed to difficulties accessing allied health interventions; this could be somewhat relieved by funding packages. The ability to seek and engage in healthcare was present in all participants.

Conclusions: PwPD recognise the need for allied health but experience barriers when accessing care, resulting in them not receiving the recommended early, regular and ongoing allied healthcare. Funding arrangements should be reviewed to enable this.

Patient or Public Contribution: People with Parkinson's disease and their care-partners generated the findings of this study through their interviews and retrospective charts. They provided feedback on results via member checking of their transcripts.

Clinical Trial Registration: Not applicable.