Informal caregivers experience of supplemental oxygen in pulmonary fibrosis

Abstract 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 t...

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Main Authors: Bridget A. Graney, Frederick S. Wamboldt, Susan Baird, Tara Churney, Kaitlin Fier, Marjorie Korn, Mark McCormick, Thomas Vierzba, Jeffrey J. Swigris
Format: Article
Language:English
Published: BMC 2017-07-01
Series:Health and Quality of Life Outcomes
Subjects:
Online Access:http://link.springer.com/article/10.1186/s12955-017-0710-0
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author Bridget A. Graney
Frederick S. Wamboldt
Susan Baird
Tara Churney
Kaitlin Fier
Marjorie Korn
Mark McCormick
Thomas Vierzba
Jeffrey J. Swigris
author_facet Bridget A. Graney
Frederick S. Wamboldt
Susan Baird
Tara Churney
Kaitlin Fier
Marjorie Korn
Mark McCormick
Thomas Vierzba
Jeffrey J. Swigris
author_sort Bridget A. Graney
collection DOAJ
description Abstract 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. Methods We conducted single, semi-structured telephone interviews with twenty ICs of patients with PF who were using O2 for at least 8 months. We performed a qualitative, content analysis based in grounded theory to examine data across subjects. Results ICs initially reacted to O2 with trepidation and sadness as they came to recognize the changes it would cause in the lives of their patient-loved one (PLO). ICs recognized both beneficial and negative effects of O2 on their PLOs. ICs also realized that O2 created significant changes in their own lives, including introducing new roles and responsibilities for them, altering their home environments and significantly impacting their relationships with their PLOs. Although O2 was a tangible and constant reminder of disease progression, over time ICs were able to adapt and accept their new lives with O2. Conclusion ICs of patients with PF experience many life changes when their PLO is prescribed O2. Having O2 prescribers anticipate and recognize these challenges provides an opportunity to give support and guidance to ICs of PF patients who require O2 in the hopes of limiting the negative impact of O2 on their lives. Trial registration Clinicaltrials.gov , registration number NCT01961362 . Registered 9 October 2013.
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spelling doaj.art-2196ac6f7bf34f1e89d1e2450993f37c2022-12-21T23:42:47ZengBMCHealth and Quality of Life Outcomes1477-75252017-07-011511610.1186/s12955-017-0710-0Informal caregivers experience of supplemental oxygen in pulmonary fibrosisBridget A. Graney0Frederick S. Wamboldt1Susan Baird2Tara Churney3Kaitlin Fier4Marjorie Korn5Mark McCormick6Thomas Vierzba7Jeffrey J. Swigris8Division of Pulmonary Sciences and Critical Care Medicine, University of Colorado DenverParticipation Program for Pulmonary Fibrosis (P3F), P3F Coordinating Center, c/o National Jewish HealthParticipation Program for Pulmonary Fibrosis (P3F), P3F Coordinating Center, c/o National Jewish HealthParticipation Program for Pulmonary Fibrosis (P3F), P3F Coordinating Center, c/o National Jewish HealthParticipation Program for Pulmonary Fibrosis (P3F), P3F Coordinating Center, c/o National Jewish HealthParticipation Program for Pulmonary Fibrosis (P3F), P3F Coordinating Center, c/o National Jewish HealthParticipation Program for Pulmonary Fibrosis (P3F), P3F Coordinating Center, c/o National Jewish HealthParticipation Program for Pulmonary Fibrosis (P3F), P3F Coordinating Center, c/o National Jewish HealthDivision of Pulmonary Sciences and Critical Care Medicine, University of Colorado DenverAbstract 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. Methods We conducted single, semi-structured telephone interviews with twenty ICs of patients with PF who were using O2 for at least 8 months. We performed a qualitative, content analysis based in grounded theory to examine data across subjects. Results ICs initially reacted to O2 with trepidation and sadness as they came to recognize the changes it would cause in the lives of their patient-loved one (PLO). ICs recognized both beneficial and negative effects of O2 on their PLOs. ICs also realized that O2 created significant changes in their own lives, including introducing new roles and responsibilities for them, altering their home environments and significantly impacting their relationships with their PLOs. Although O2 was a tangible and constant reminder of disease progression, over time ICs were able to adapt and accept their new lives with O2. Conclusion ICs of patients with PF experience many life changes when their PLO is prescribed O2. Having O2 prescribers anticipate and recognize these challenges provides an opportunity to give support and guidance to ICs of PF patients who require O2 in the hopes of limiting the negative impact of O2 on their lives. Trial registration Clinicaltrials.gov , registration number NCT01961362 . Registered 9 October 2013.http://link.springer.com/article/10.1186/s12955-017-0710-0Pulmonary fibrosisInformal caregiversOxygenInterstitial lung diseaseQuality of life
spellingShingle Bridget A. Graney
Frederick S. Wamboldt
Susan Baird
Tara Churney
Kaitlin Fier
Marjorie Korn
Mark McCormick
Thomas Vierzba
Jeffrey J. Swigris
Informal caregivers experience of supplemental oxygen in pulmonary fibrosis
Health and Quality of Life Outcomes
Pulmonary fibrosis
Informal caregivers
Oxygen
Interstitial lung disease
Quality of life
title Informal caregivers experience of supplemental oxygen in pulmonary fibrosis
title_full Informal caregivers experience of supplemental oxygen in pulmonary fibrosis
title_fullStr Informal caregivers experience of supplemental oxygen in pulmonary fibrosis
title_full_unstemmed Informal caregivers experience of supplemental oxygen in pulmonary fibrosis
title_short Informal caregivers experience of supplemental oxygen in pulmonary fibrosis
title_sort informal caregivers experience of supplemental oxygen in pulmonary fibrosis
topic Pulmonary fibrosis
Informal caregivers
Oxygen
Interstitial lung disease
Quality of life
url http://link.springer.com/article/10.1186/s12955-017-0710-0
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