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

Abstract

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.

Keywords

lived experience palliative care Parkinson’s disease patient and family needs phenomenology neurodegenerative diseases

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