The lived experience with idiopathic pulmonary fibrosis: a qualitative study

Dorthe Overgaard, Gudrun Kaldan, Kristoffer Marsaa, Thyge Lynghøj Nielsen, Saher Burhan Shaker, Ingrid Egerod

Research output: Contribution to journalJournal articleResearchpeer-review


The disease course in idiopathic pulmonary fibrosis (IPF) is variable, but patients experience a progressive decline in lung function and increased symptom burden leading to death. Little is known about the patients' experience and their needs during the disease course or about the burden on family caregivers. Both patients and family caregivers face an altered life as the disease progresses. The aim of our study was to increase knowledge of life with IPF for patients and family caregivers.This study had a qualitative descriptive design using in-depth dyadic interviews with IPF patients (n=25) and family caregivers (n=24). We used the five-step analysis from the framework method and analysed the data on three levels: the patient, the family caregivers and couple level.The following six themes emerged as the main results: information and disclosure, reactional dyssynchrony, perpetual vigilance, emotional ambivalence, gradual and tacit role shift, and adapted coping strategies.Our findings suggest that IPF patients need information at the time of diagnosis, but some issues should be paced as the disease progresses. A palliation plan was demanded by patients and their caregivers. Further efforts are required to provide palliative care to IPF patients starting at the time of diagnosis.

Original languageEnglish
JournalEuropean Respiratory Journal
Issue number5
Pages (from-to)1472-1480
Number of pages9
Publication statusPublished - May 2016
Externally publishedYes

Bibliographical note

Copyright ©ERS 2016.


  • Access to Information
  • Adaptation, Psychological
  • Aged
  • Aged, 80 and over
  • Caregivers
  • Disease Progression
  • Emotions
  • Ethics, Medical
  • Female
  • Humans
  • Idiopathic Pulmonary Fibrosis/physiopathology
  • Male
  • Middle Aged
  • Palliative Care
  • Patient Education as Topic/methods
  • Qualitative Research


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