Young-onset Parkinson’s in the home: how identity, aesthetics and expectations affect the implementation of assistive technology in the home

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.

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Publication Details

Journal
Disability and Rehabilitation Assistive Technology
Published
2026-05-16
DOI
https://doi.org/10.1080/17483107.2026.2674311
Primary Topic
Assistive Technology in Communication and Mobility
Type
article
Field-Weighted Citation Impact
0.00

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article

Young-onset Parkinson’s in the home: how identity, aesthetics and expectations affect the implementation of assistive technology in the home

Lewis Johnstone
Disability and Rehabilitation Assistive Technology
Assistive Technology in Communication and Mobility
article

Young-onset Parkinson’s in the home: how identity, aesthetics and expectations affect the implementation of assistive technology in the home

Lewis Johnstone
article en

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.

Disability and Rehabilitation Assistive Technology
Monash University (AU)
Australian Government
Openalex Percentile: Top 2%
Assistive Technology in Communication and Mobility
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