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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 dise...

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Autores principales: Ramadurai, Deepa, Corder, Stephanie, Churney, Tara, Graney, Bridget, Harshman, Andrea, Meadows, Sarah, Swigris, Jeffrey J
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5812387/
https://www.ncbi.nlm.nih.gov/pubmed/29464212
http://dx.doi.org/10.1136/bmjoq-2017-000207
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author Ramadurai, Deepa
Corder, Stephanie
Churney, Tara
Graney, Bridget
Harshman, Andrea
Meadows, Sarah
Swigris, Jeffrey J
author_facet Ramadurai, Deepa
Corder, Stephanie
Churney, Tara
Graney, Bridget
Harshman, Andrea
Meadows, Sarah
Swigris, Jeffrey J
author_sort Ramadurai, Deepa
collection PubMed
description 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. METHODS: We conducted two hour-long focus groups with 13 patients with IPF and 4 caregivers of patients with IPF to better understand their informational needs and in what format such information should be delivered. RESULTS: Patients discussed the challenges IPF creates in their daily lives. They wanted information on how to live well despite having IPF, practical information on how they could remain active and travel and how they could preserve their quality of life despite living with a life-threatening disease like IPF. Caregivers wanted information on the general aspects of IPF, because it would help them understand what patients were going through. They also wanted specific information on how to give care to a patient with IPF, even when physical care may not be needed (as in earlier phases of the disease). Patients and caregivers both needed efficient information delivery from trustworthy sources, including the healthcare team involved in their care. They considered both spoken and written information valuable, and ease of access was critical. CONCLUSION: This study provides valuable insight regarding the informational needs of IPF patients and their caregivers. It is hoped that identifying or creating sources of this information, and insuring that patients and caregivers have access to it, will improve well-being for patients with IPF and their caregivers.
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spelling pubmed-58123872018-02-20 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?’ Ramadurai, Deepa Corder, Stephanie Churney, Tara Graney, Bridget Harshman, Andrea Meadows, Sarah Swigris, Jeffrey J BMJ Open Qual Original Article 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. METHODS: We conducted two hour-long focus groups with 13 patients with IPF and 4 caregivers of patients with IPF to better understand their informational needs and in what format such information should be delivered. RESULTS: Patients discussed the challenges IPF creates in their daily lives. They wanted information on how to live well despite having IPF, practical information on how they could remain active and travel and how they could preserve their quality of life despite living with a life-threatening disease like IPF. Caregivers wanted information on the general aspects of IPF, because it would help them understand what patients were going through. They also wanted specific information on how to give care to a patient with IPF, even when physical care may not be needed (as in earlier phases of the disease). Patients and caregivers both needed efficient information delivery from trustworthy sources, including the healthcare team involved in their care. They considered both spoken and written information valuable, and ease of access was critical. CONCLUSION: This study provides valuable insight regarding the informational needs of IPF patients and their caregivers. It is hoped that identifying or creating sources of this information, and insuring that patients and caregivers have access to it, will improve well-being for patients with IPF and their caregivers. BMJ Publishing Group 2018-01-30 /pmc/articles/PMC5812387/ /pubmed/29464212 http://dx.doi.org/10.1136/bmjoq-2017-000207 Text en © Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/ This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/
spellingShingle Original Article
Ramadurai, Deepa
Corder, Stephanie
Churney, Tara
Graney, Bridget
Harshman, Andrea
Meadows, Sarah
Swigris, Jeffrey J
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?’
title 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?’
title_full 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?’
title_fullStr 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?’
title_full_unstemmed 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?’
title_short 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?’
title_sort 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?’
topic Original Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5812387/
https://www.ncbi.nlm.nih.gov/pubmed/29464212
http://dx.doi.org/10.1136/bmjoq-2017-000207
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