The palliative care needs for fibrotic interstitial lung disease: a qualitative study of patients, informal caregivers and health professionals

Sabrina Bajwah, Irene Higginson, Joy Ross, A. U. Wells, Surinder Birring, Julia Riley, Jonathan Koffman

Research output: Contribution to journalArticlepeer-review

125 Citations (Scopus)

Abstract

Background
While there have been some studies looking at the impact on quality of life of patients with idiopathic pulmonary fibrosis, to date no qualitative research looking at the specialist palliative needs of these patients has been conducted.

Aim
This study aims to explore the specialist palliative care needs of people living with end stage Progressive Idiopathic Fibrotic Interstitial Lung Disease (PIF-ILD).

Design, Settings/participants
18 qualitative semi-structured in-depth interviews were conducted with patients, their informal caregivers and health professionals across two specialists ILD centres in London and in the community.

Results
Many participants reported uncontrolled symptoms of shortness of breath, cough and insomnia which profoundly impacted on every part of patients’ and informal caregivers’ lives. Psychologically, patients were frustrated and angry at the way in which their illness severely limited their ability to engage in activities of daily living and compromised their independence. Further, both patients and informal caregivers also reported that the disease seriously affected family relationships where strain was pronounced. There was varied knowledge and confidence amongst health professionals in managing symptoms and psychosocial needs were often underestimated.

Conclusion
This study is the first of its kind to examine in-depth the impact of symptoms and psychosocial needs revealing the profound effect on every aspect of PIF-ILD patients’ and informal caregivers’ lives. Education and guidance of appropriate palliative care interventions to improve symptom control are needed. A case conference intervention with individualised care plans may help in addressing the substantial symptom control and psychosocial needs of these patients and informal caregivers.
Original languageEnglish
Pages (from-to)869-876
Number of pages8
JournalPalliative Medicine
Volume27
Issue number9
DOIs
Publication statusPublished - Oct 2013

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