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Pulmonary Fibrosis

A scoping review of unmet needs of caregivers of patients with pulmonary fibrosis

Background: Pulmonary fibrosis is an incurable lung disease that leads to significant morbidity. In many patients, pulmonary fibrosis is progressive causing debilitating dyspnea that impairs patients' ability to perform everyday tasks and maintain independence. Informal caregivers provide invaluable support for patients with pulmonary fibrosis; however, support for the caregiver is inadequate. Objective: The purpose of this scoping review is to identify unmet needs for caregivers of pulmonary fibrosis patients.

Wed, 08/10/2022 - 19:45

Understanding the informational needs of patients with IPF and their caregivers : ‘you get diagnosed, and you ask this question right away, what does this mean?’

BACKGROUND: Idiopathic pulmonary fibrosis (IPF) is a progressive, incurable lung disease whose intrusive symptoms rob patients of their quality of life. Patients with IPF rely on their caregivers for support and assistance in amounts that vary according to patients' individual circumstances and disease severity. Knowledgeable and well-informed patients and caregivers are best suited to deal with life-altering conditions like IPF.

Tue, 05/14/2019 - 19:29

Early integrated palliative approach for idiopathic pulmonary fibrosis: A narrative study of bereaved caregivers’ experiences

Background: Idiopathic pulmonary fibrosis has an uncertain and rapid trajectory after diagnosis. Palliative care is rarely utilized, although both patients and caregivers experience a distressingly high symptom burden. Most patients die in hospital. Aim: The purpose of this study was to explore bereaved caregivers’ experiences and perceptions of an early integrated palliative approach implemented at a Multidisciplinary Interstitial Lung Disease Clinic.

Wed, 04/03/2019 - 16:30

Informal caregivers experience of supplemental oxygen in pulmonary fibrosis

Background Patients prescribed supplemental oxygen (O2) therapy face challenges as they adjust to being constantly “tethered” to an oxygen delivery device. Informal caregivers (ICs) of patients with pulmonary fibrosis (PF) face their own, often overlooked hardships when O2 is brought into their home and added to their lives. Our aim was to understand the multiple effects of supplemental oxygen therapy on ICs of patients with PF.

Thu, 03/07/2019 - 12:26