期刊
HEART & LUNG
卷 46, 期 1, 页码 24-29出版社
MOSBY-ELSEVIER
DOI: 10.1016/j.hrtlng.2016.10.002
关键词
Idiopathic pulmonary fibrosis; Caregivers; Palliative care; Symptom burden; Advance care planning
资金
- Leslie A. Hoffman Acute Care Endowed Research Award, University of Pittsburgh School of Nursing
- Agency for Healthcare Research and Quality [K12HS022989]
- Cystic Fibrosis Foundation [PILEWS14Q10]
- National Palliative Care Research Center
Objectives: To explore the perceptions of palliative care (PC) needs in patients with idiopathic pulmonary fibrosis (IPF) and their caregivers. Background: IPF carries a poor prognosis with most patients succumbing to their illness at a rate comparable to aggressive cancers. No prior studies have comprehensively explored perceptions of PC needs from those currently living with the disease, caring for someone living with the disease, and who cared for a deceased family member. Methods: Thematic analysis of focus group content was obtained from thirteen participants. Results: Four themes described frustration with the diagnostic process and education received, overwhelming symptom burden, hesitance to engage in advance care planning, and comfort in receiving care from pulmonary specialty center because of resources. Conclusions: Findings support that patients and caregivers have informational needs and high symptom burden, but limited understanding of the potential benefits of PC. Future studies are needed to identify optimal ways to introduce early PC. (C) 2016 Elsevier Inc. All rights reserved.
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