title: 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.
authors.affiliation: Toronto Western Hospital, West Wing, University Health Network, Ontario, Canada. sgilesmsw@sympatico.ca
authors.forename: S
authors.initials: S
authors.lastname: Giles
authors.forename: J
authors.initials: J
authors.lastname: Miyasaki
mesh_terms: D000328:Adult; D000368:Aged; D001294:Attitude to Health; D017028:Caregivers; D003430:Cross-Sectional Studies; D005190:Family; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000523:psychology / Q000592:standards*; D010300:Parkinson Disease / Q000628:therapy*; D017060:Patient Satisfaction; D011368:Professional-Family Relations; D011369:Professional-Patient Relations; D036301:Qualitative Research; D011787:Quality of Health Care / Q000592:standards*; D013727:Terminal Care / Q000523:psychology / Q000592:standards*