title: End of life care in CF: patients, families and staff experiences and unmet needs.
abstract: Palliative care is not well understood in CF. Unmet needs of patients with CF, their families and staff were explored.
  
  
  METHODS
  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.
authors: The Cystic Fibrosis Service, Department of Allergy, Immunology & Respiratory Medicine, The Alfred Hospital, Commercial Road, Prahran, 3181, Australia.
authors: Maxine
authors: M
authors: Braithwaite
authors: Jennifer
authors: J
authors: Philip
authors: Heidi
authors: H
authors: Tranberg
authors: Felicity
authors: F
authors: Finlayson
authors: Michelle
authors: M
authors: Gold
authors: Tom
authors: T
authors: Kotsimbos
authors: John
authors: J
authors: Wilson
mesh_terms: D000328:Adult; D001294:Attitude to Health; D017028:Caregivers / Q000523:psychology; D003550:Cystic Fibrosis / Q000523:psychology* / Q000628:therapy*; D005190:Family / Q000523:psychology; D005260:Female; D017144:Focus Groups; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D016040:Lung Transplantation; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D010166:Palliative Care / Q000379:methods / Q000523:psychology; D010361:Patients / Q000523:psychology; D013727:Terminal Care / Q000379:methods* / Q000523:psychology*; D014850:Waiting Lists