Young-onset Parkinson’s in the home: how identity, aesthetics and expectations affect the implementation of assistive technology in the home
Year: 2026
Type: article
Abstract: PURPOSE: Young-onset Parkinson's disease (YOPD) reshapes everyday life at home, yet research on how younger adults negotiate domestic space and home modification remains limited. This article examines how people living with YOPD make sense of, adopt, delay and resist home modifications and how these decisions are shaped by identity, aesthetics, relationships and expectations about the future. METHODS: The study draws on qualitative data from an Australian project involving narrative, semi-structured interviews and a photovoice activity. Nine participants (aged 38-67) were selected due to their substantive engagement with home-related themes. Transcripts were analysed using experience-centred narrative analysis with an inductive, constant-comparative approach. RESULTS: Three interrelated findings were identified. First, home modifications often transformed the meaning of home, with assistive technologies contributing to feelings of medicalisation as domestic spaces came to resemble "nursing homes." This created tensions between safety, aesthetics and identity. Second, participants evaluated homes through prognosis, planning for uncertain futures by prioritising accessibility within the dwelling and beyond it, revealing how homes were re-imagined as infrastructures for sustaining autonomy. Third, participants described feeling "aged out of time," as assistive devices signalled premature ageing, prompting selective uptake and delayed implementation even when supports were available. CONCLUSION: Home modification in YOPD is not a purely functional response to impairment but a sociomaterial negotiation that mediates identity, relationships, temporality and the meanings of home. Policies and services should better recognise the distinctive life-course positioning of younger adults with Parkinson's by supporting earlier, collaborative and aesthetically sensitive planning to home adaption.
Author: Lewis Johnstone
Institution: Monash University
Language: English
Subfield: Occupational Therapy
Field: Health Professions
Domain: Health Sciences
Open Access status: hybrid
Funder: Australian Government
OpenAlex ID: W7161400496