End of Life Care in CF: Patients, Families and Staff Experiences and Unmet Needs

J Cyst Fibros. 2011 Jul;10(4):253-7. doi: 10.1016/j.jcf.2011.03.002. Epub 2011 Mar 27.

Abstract

Palliative care is not well understood in CF. Unmet needs of patients with CF, their families and staff were explored.

Method: Focus groups and interviews with forty-two participants (12 patients, 10 family members and 20 staff) were conducted at a university teaching hospital.

Results: Thematic analysis identified six themes. Knowledge: Patients and families felt their knowledge of palliative care was limited. Psychological frame: Hope and a positive psychological frame was essential to coping, however, this was a hindrance to the acquisition of information. Denial as a coping strategy resulted in a lack of preparation for declining health. Treating team: High expectations were placed on the treating team. Psychosocial support was valued. Communication: Timing, honest and clear discussions were important. Engagement with palliative care service: Increased palliative care. Unmet needs: The emotional burden of caring for dying patients/families and balancing hope against death was a challenge.

Conclusions: Opportunities exist to improve care.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Attitude to Health
  • Caregivers / psychology
  • Cystic Fibrosis / psychology*
  • Cystic Fibrosis / therapy*
  • Family / psychology
  • Female
  • Focus Groups
  • Health Knowledge, Attitudes, Practice*
  • Humans
  • Lung Transplantation
  • Male
  • Middle Aged
  • Needs Assessment
  • Palliative Care / methods
  • Palliative Care / psychology
  • Patients / psychology
  • Terminal Care / methods*
  • Terminal Care / psychology*
  • Waiting Lists