This Article Full Text (OnlineFirst PDF) All Versions of this Article: 0269216308100773v1 23/2/120    most recent Alert me when this article is cited Alert me if a correction is posted Services Email this article to a friend Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Add to Saved Citations Download to citation manager Request Permissions Request Reprints Add to My Marked Citations Citing Articles Citing Articles via Google Scholar Citing Articles via Scopus Google Scholar Articles by Giles, S Articles by Miyasaki, J Search for Related Content PubMed PubMed Citation Articles by Giles, S Articles by Miyasaki, J Pubmed/NCBI databases Medline Plus Health Information Caregivers Family Issues Palliative Care Parkinson's Disease Patient Rights Social Bookmarking                         What's this?

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

¹ Toronto Western Hospital, West Wing, University Health Network, ON
² Movement Disorder Centre, Toronto Western Hospital, University Health Network, University of Toronto, ON

^* To whom correspondence should be addressed.

	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.

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

First published on December 19, 2008, doi:10.1177/0269216308100773

Palliative Medicine 2009;23:120.

A more recent version of this article appeared on March 1, 2009


CiteULike    Complore    Connotea    Del.icio.us    Digg    Reddit    Technorati    Twitter    What's this?