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

Palliat Med. 2009 Mar;23(2):120-5. doi: 10.1177/0269216308100773. Epub 2008 Dec 19.


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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Aged
  • Attitude to Health
  • Caregivers*
  • Cross-Sectional Studies
  • Family*
  • Female
  • Humans
  • Male
  • Middle Aged
  • Palliative Care / psychology
  • Palliative Care / standards*
  • Parkinson Disease / therapy*
  • Patient Satisfaction
  • Professional-Family Relations
  • Professional-Patient Relations
  • Qualitative Research
  • Quality of Health Care / standards*
  • Terminal Care / psychology
  • Terminal Care / standards*