title: CF healthcare workers feel unprepared in providing suitable end of life care and desire more education: Results of a nationwide survey.
abstract: BACKGROUND
  Little is known about the depth of knowledge and preparedness of CF caregivers in delivering end of life and palliative care to CF patients and families.
  
  
  METHODS
  Nationwide survey questionnaires for CF care providers using the CF Foundation Listserv electronic web-based tool.
  
  
  RESULTS
  The majority of non-physician CF care providers (55%) had more than 15 years of experience in their discipline and 84% of physician had greater than 15 years of experience. The majority reported that they felt "somewhat" or "very" involved in palliative or end of life care in their current role. Yet, when asked whether they felt adequately prepared to deliver palliative and end of life care, only 18% reported that they were "fully prepared" and 45% felt that they were only "minimally" or "not" prepared. Further, only one third of respondents received more than 10h of education in general palliative or end-of-life care, while only 10% had received more than 10h of education specific to CF end of life care. The majority (73%) of CF healthcare providers preferred more education specific to CF end of life care.
  
  
  CONCLUSIONS
  CF healthcare providers are involved in CF end of life issues but a fair number did not understand their role and felt inadequately prepared in delivering suitable end of life and palliative care. Many desired more education in the provision of such care.
authors.affiliation: Adult CF Center University of California, San Diego, United States.
authors.forename: Jessica
authors.initials: J
authors.lastname: Goggin
authors.affiliation: Adult CF Center, The Hofstra North Shore-LIJ School of Medicine, United States. Electronic address: cohneru@aol.com.
authors.forename: Rubin I
authors.initials: RI
authors.lastname: Cohen
mesh_terms: D032722:Advance Care Planning; D001291:Attitude of Health Personnel; D003550:Cystic Fibrosis / Q000523:psychology / Q000628:therapy; D019538:Health Care Surveys; D007722:Health Knowledge, Attitudes, Practice; D006282:Health Personnel / Q000193:education / Q000523:psychology; D006801:Humans; D020380:Needs Assessment; D010166:Palliative Care / Q000379:methods*; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000379:methods / Q000523:psychology; D014481:United States
keywords: CF care providers; Education; End of life care; Palliative care; Survey