Perceptions, experiences and needs of patients with idiopathic pulmonary fibrosis

Annette Duck, Lisa G. Spencer, Simon Bailey, Colm Leonard, Jennifer Ormes, Ann Louise Caress

Research output: Contribution to journalArticle

37 Citations (Scopus)

Abstract

Aims: To understand the perceptions, needs and experiences of patients with Idiopathic Pulmonary Fibrosis. Background: Idiopathic pulmonary fibrosis is a progressive interstitial lung disease, with a mean life expectancy similar to some forms of cancer of 2-4 years from diagnosis. Unlike the cancer literature, which is rich with studies exploring the needs of their disease group, few publications exist on patient needs with this severe fibrotic lung disease. Design: A Qualitative study which took place between 2007-2012. Methods: Seventeen patients with a multidisciplinary team confirmed diagnosis of Idiopathic Pulmonary Fibrosis, with moderate to advanced disease severity and six of their informal carers were interviewed. An interview topic guide was developed by the researchers and service user group. The interviews were audio-recorded, semi-structured and took place at a regional respiratory and lung transplant centre in North West England. Interviews were transcribed verbatim and data analysed using Framework Analysis. Findings: Three main themes were identified: 'Struggling to get a diagnosis'; 'Loss of the life I previously had'; and 'Living with Idiopathic Pulmonary Fibrosis'. Patients reported struggling to get a diagnosis and coping with a life-limiting, rapidly progressive illness with no good treatment and few support structures. Conclusions: There is an urgent need for a better understanding of the difficulties faced by people with Idiopathic Pulmonary Fibrosis and their carers. This can be used to develop better supportive care in the United Kingdom and ultimately improve the quality of life of these patients.

LanguageEnglish
Pages1055-1065
Number of pages11
JournalJournal of Advanced Nursing
Volume71
Issue number5
Early online date23 Dec 2014
DOIs
Publication statusPublished - 1 May 2015
Externally publishedYes

Fingerprint

Idiopathic Pulmonary Fibrosis
Interviews
Caregivers
Interstitial Lung Diseases
Life Expectancy
England
Lung Diseases
Publications
Neoplasms
Quality of Life
Research Personnel
Transplants
Lung

Cite this

Duck, Annette ; Spencer, Lisa G. ; Bailey, Simon ; Leonard, Colm ; Ormes, Jennifer ; Caress, Ann Louise. / Perceptions, experiences and needs of patients with idiopathic pulmonary fibrosis. In: Journal of Advanced Nursing. 2015 ; Vol. 71, No. 5. pp. 1055-1065.
@article{19cd3f9879fd4200813918376e3af253,
title = "Perceptions, experiences and needs of patients with idiopathic pulmonary fibrosis",
abstract = "Aims: To understand the perceptions, needs and experiences of patients with Idiopathic Pulmonary Fibrosis. Background: Idiopathic pulmonary fibrosis is a progressive interstitial lung disease, with a mean life expectancy similar to some forms of cancer of 2-4 years from diagnosis. Unlike the cancer literature, which is rich with studies exploring the needs of their disease group, few publications exist on patient needs with this severe fibrotic lung disease. Design: A Qualitative study which took place between 2007-2012. Methods: Seventeen patients with a multidisciplinary team confirmed diagnosis of Idiopathic Pulmonary Fibrosis, with moderate to advanced disease severity and six of their informal carers were interviewed. An interview topic guide was developed by the researchers and service user group. The interviews were audio-recorded, semi-structured and took place at a regional respiratory and lung transplant centre in North West England. Interviews were transcribed verbatim and data analysed using Framework Analysis. Findings: Three main themes were identified: 'Struggling to get a diagnosis'; 'Loss of the life I previously had'; and 'Living with Idiopathic Pulmonary Fibrosis'. Patients reported struggling to get a diagnosis and coping with a life-limiting, rapidly progressive illness with no good treatment and few support structures. Conclusions: There is an urgent need for a better understanding of the difficulties faced by people with Idiopathic Pulmonary Fibrosis and their carers. This can be used to develop better supportive care in the United Kingdom and ultimately improve the quality of life of these patients.",
keywords = "IPF, Diagnosis, Experiences, Idiopathic pulmonary fibrosis, Nursing, Oxygen, Palliative care, Quality of life, Respiratory, Symptoms",
author = "Annette Duck and Spencer, {Lisa G.} and Simon Bailey and Colm Leonard and Jennifer Ormes and Caress, {Ann Louise}",
year = "2015",
month = "5",
day = "1",
doi = "10.1111/jan.12587",
language = "English",
volume = "71",
pages = "1055--1065",
journal = "Journal of Advanced Nursing",
issn = "0309-2402",
publisher = "Wiley-Blackwell",
number = "5",

}

Perceptions, experiences and needs of patients with idiopathic pulmonary fibrosis. / Duck, Annette; Spencer, Lisa G.; Bailey, Simon; Leonard, Colm; Ormes, Jennifer; Caress, Ann Louise.

In: Journal of Advanced Nursing, Vol. 71, No. 5, 01.05.2015, p. 1055-1065.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Perceptions, experiences and needs of patients with idiopathic pulmonary fibrosis

AU - Duck, Annette

AU - Spencer, Lisa G.

AU - Bailey, Simon

AU - Leonard, Colm

AU - Ormes, Jennifer

AU - Caress, Ann Louise

PY - 2015/5/1

Y1 - 2015/5/1

N2 - Aims: To understand the perceptions, needs and experiences of patients with Idiopathic Pulmonary Fibrosis. Background: Idiopathic pulmonary fibrosis is a progressive interstitial lung disease, with a mean life expectancy similar to some forms of cancer of 2-4 years from diagnosis. Unlike the cancer literature, which is rich with studies exploring the needs of their disease group, few publications exist on patient needs with this severe fibrotic lung disease. Design: A Qualitative study which took place between 2007-2012. Methods: Seventeen patients with a multidisciplinary team confirmed diagnosis of Idiopathic Pulmonary Fibrosis, with moderate to advanced disease severity and six of their informal carers were interviewed. An interview topic guide was developed by the researchers and service user group. The interviews were audio-recorded, semi-structured and took place at a regional respiratory and lung transplant centre in North West England. Interviews were transcribed verbatim and data analysed using Framework Analysis. Findings: Three main themes were identified: 'Struggling to get a diagnosis'; 'Loss of the life I previously had'; and 'Living with Idiopathic Pulmonary Fibrosis'. Patients reported struggling to get a diagnosis and coping with a life-limiting, rapidly progressive illness with no good treatment and few support structures. Conclusions: There is an urgent need for a better understanding of the difficulties faced by people with Idiopathic Pulmonary Fibrosis and their carers. This can be used to develop better supportive care in the United Kingdom and ultimately improve the quality of life of these patients.

AB - Aims: To understand the perceptions, needs and experiences of patients with Idiopathic Pulmonary Fibrosis. Background: Idiopathic pulmonary fibrosis is a progressive interstitial lung disease, with a mean life expectancy similar to some forms of cancer of 2-4 years from diagnosis. Unlike the cancer literature, which is rich with studies exploring the needs of their disease group, few publications exist on patient needs with this severe fibrotic lung disease. Design: A Qualitative study which took place between 2007-2012. Methods: Seventeen patients with a multidisciplinary team confirmed diagnosis of Idiopathic Pulmonary Fibrosis, with moderate to advanced disease severity and six of their informal carers were interviewed. An interview topic guide was developed by the researchers and service user group. The interviews were audio-recorded, semi-structured and took place at a regional respiratory and lung transplant centre in North West England. Interviews were transcribed verbatim and data analysed using Framework Analysis. Findings: Three main themes were identified: 'Struggling to get a diagnosis'; 'Loss of the life I previously had'; and 'Living with Idiopathic Pulmonary Fibrosis'. Patients reported struggling to get a diagnosis and coping with a life-limiting, rapidly progressive illness with no good treatment and few support structures. Conclusions: There is an urgent need for a better understanding of the difficulties faced by people with Idiopathic Pulmonary Fibrosis and their carers. This can be used to develop better supportive care in the United Kingdom and ultimately improve the quality of life of these patients.

KW - IPF

KW - Diagnosis

KW - Experiences

KW - Idiopathic pulmonary fibrosis

KW - Nursing

KW - Oxygen

KW - Palliative care

KW - Quality of life

KW - Respiratory

KW - Symptoms

UR - http://www.scopus.com/inward/record.url?scp=84927176270&partnerID=8YFLogxK

U2 - 10.1111/jan.12587

DO - 10.1111/jan.12587

M3 - Article

VL - 71

SP - 1055

EP - 1065

JO - Journal of Advanced Nursing

T2 - Journal of Advanced Nursing

JF - Journal of Advanced Nursing

SN - 0309-2402

IS - 5

ER -