Home-based exercise rehabilitation experience for older adult patients with Parkinson's disease and caregivers: a qualitative research

针对老年帕金森病患者及其照护者的居家运动康复体验:一项定性研究

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Abstract

OBJECTIVE: To understand the real-life experiences and needs of older adult patients with Parkinson's disease and their caregivers regarding home-based exercise rehabilitation, and to provide evidence for developing scientifically grounded home exercise rehabilitation intervention programs. METHODS: A total of 15 older adult patients with Parkinson's disease and 13 caregivers from the Neurology Department of a tertiary-level Class A hospital in Urumqi were selected using purposive sampling for semi-structured interviews. Data analysis and theme extraction were conducted using content analysis. RESULTS: The analysis identified three primary themes: (1) "The Knowledge-Practice Gap in Self-Management," in which poor understanding of PD and exercise benefits resulted in low motivation and a lack of accessible skills led to monotonous routines; (2) "The Unsupported Caregiver: A System and Family Gap," in which the efforts of caregivers were hindered by their own limitations and a lack of training, compounded by the absence of family and community support networks; and (3) "An Appeal for an Integrated Support Continuum," which reflected a strong need for ongoing professional guidance and comprehensive social and policy support. CONCLUSION: Systemic multidimensional bottlenecks, specifically a critical knowledge-practice gap among patients and a stark lack of support for aging caregivers, hinder home-based exercise rehabilitation for older adults with PD in northwest China. To address these context-specific barriers, healthcare systems should develop an integrated "hospital-community-family" care model that provides continuous professional guidance and robust social support, ultimately aiming at improving rehabilitation efficacy and quality of life.

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