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Palliative Medicine
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*Caregivers
*Family Issues
*Palliative Care
*Parkinson's Disease
*Patient Rights
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What's this?

research-article

Palliative stage Parkinson’s disease: patient and family experiences of health-care services

S Giles

Toronto Western Hospital, West Wing, University Health Network, ON sgilesmsw{at}sympatico.ca

J Miyasaki

Movement Disorder Centre, Toronto Western Hospital, University Health Network, University of Toronto, ON

Little is known about the lived health-care experiences of persons living with palliative stage Parkinson’s disease and the family members who care for them. An exploratory phenomenological investigation was adopted to understand participant’s lived health-care experiences and the needs flowing from them. Three family groupings participated in semi-structured in-depth interviews. Interpretative phenomenological analysis revealed three main themes: missing information, being on your own, wanting and not wanting to know. Findings support previous research that indicate palliative care needs are not being met in our current health-care model and that palliative care services should be multi-disciplinary team-based in order to provide comprehensive support to patients and families. Based on this current work, we are currently undertaking a comprehensive quantitative-based multi-disciplinary health-care service needs assessment of palliative stage PD patients with the goal to implement expanded services.

Key Words: lived experience • palliative care • Parkinson’s disease • patient and family needs • phenomenology • neurodegenerative diseases

This version was published on March 1, 2009

Palliative Medicine, Vol. 23, No. 2, 120-125 (2009)
DOI: 10.1177/0269216308100773
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