‘People that suffer or have been through it know the answers’: stakeholders’ perspectives on improving healthcare systems for end-of-life care in chronic obstructive pulmonary disease

Abstract Background Chronic obstructive pulmonary disease (COPD) is a progressive and disabling lung condition with a high mortality. Our research has shown that health care for end-of-life COPD is poorly integrated. The aim of this study was to involve people with end-of-life COPD, their support pe...

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Main Authors: Amanda Landers, Suzanne G. Pitama, Suetonia C. Palmer, Lutz Beckert
Format: Article
Language:English
Published: BMC 2023-12-01
Series:BMC Health Services Research
Subjects:
Online Access:https://doi.org/10.1186/s12913-023-10431-9
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author Amanda Landers
Suzanne G. Pitama
Suetonia C. Palmer
Lutz Beckert
author_facet Amanda Landers
Suzanne G. Pitama
Suetonia C. Palmer
Lutz Beckert
author_sort Amanda Landers
collection DOAJ
description Abstract Background Chronic obstructive pulmonary disease (COPD) is a progressive and disabling lung condition with a high mortality. Our research has shown that health care for end-of-life COPD is poorly integrated. The aim of this study was to involve people with end-of-life COPD, their support people and health professionals in the design of healthcare services to help improve the delivery of care for advanced COPD, including informing system-level quality improvement. Design We conducted a focus group study involving stakeholders of healthcare services: people with end-of life COPD, support people, bereaved support people, and community- and hospital-based health care professionals. Methods We conducted qualitative analysis using deductive structural coding, and then inductive descriptive and pattern coding. Analyses were triangulated by investigators. The research positioned people with end-of-life COPD, their support people and health professionals as experts in healthcare services. Critical theory and Actor-Network theory informed the analysis. Results Seven focus groups involving 74 participants reported their experiences of end-of-life care for COPD. Five themes related to healthcare systems responses to improving care quality were identified: governance, system integration, resource design and development, standardisation of processes, and communication. Conclusion Stakeholders provided multiple healthcare system-level responses to end-of-life care in COPD that could inform healthcare service design and clinical quality improvement.
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spelling doaj.art-b839e0e58af549c2a1845e090ee803a82023-12-24T12:13:07ZengBMCBMC Health Services Research1472-69632023-12-0123111210.1186/s12913-023-10431-9‘People that suffer or have been through it know the answers’: stakeholders’ perspectives on improving healthcare systems for end-of-life care in chronic obstructive pulmonary diseaseAmanda Landers0Suzanne G. Pitama1Suetonia C. Palmer2Lutz Beckert3Department of Medicine, University of OtagoDepartment of Medicine, University of OtagoDepartment of Medicine, University of OtagoDepartment of Medicine, University of OtagoAbstract Background Chronic obstructive pulmonary disease (COPD) is a progressive and disabling lung condition with a high mortality. Our research has shown that health care for end-of-life COPD is poorly integrated. The aim of this study was to involve people with end-of-life COPD, their support people and health professionals in the design of healthcare services to help improve the delivery of care for advanced COPD, including informing system-level quality improvement. Design We conducted a focus group study involving stakeholders of healthcare services: people with end-of life COPD, support people, bereaved support people, and community- and hospital-based health care professionals. Methods We conducted qualitative analysis using deductive structural coding, and then inductive descriptive and pattern coding. Analyses were triangulated by investigators. The research positioned people with end-of-life COPD, their support people and health professionals as experts in healthcare services. Critical theory and Actor-Network theory informed the analysis. Results Seven focus groups involving 74 participants reported their experiences of end-of-life care for COPD. Five themes related to healthcare systems responses to improving care quality were identified: governance, system integration, resource design and development, standardisation of processes, and communication. Conclusion Stakeholders provided multiple healthcare system-level responses to end-of-life care in COPD that could inform healthcare service design and clinical quality improvement.https://doi.org/10.1186/s12913-023-10431-9Chronic Obstructive Pulmonary DiseaseHealthcare networkQuality health careHealthcare systems
spellingShingle Amanda Landers
Suzanne G. Pitama
Suetonia C. Palmer
Lutz Beckert
‘People that suffer or have been through it know the answers’: stakeholders’ perspectives on improving healthcare systems for end-of-life care in chronic obstructive pulmonary disease
BMC Health Services Research
Chronic Obstructive Pulmonary Disease
Healthcare network
Quality health care
Healthcare systems
title ‘People that suffer or have been through it know the answers’: stakeholders’ perspectives on improving healthcare systems for end-of-life care in chronic obstructive pulmonary disease
title_full ‘People that suffer or have been through it know the answers’: stakeholders’ perspectives on improving healthcare systems for end-of-life care in chronic obstructive pulmonary disease
title_fullStr ‘People that suffer or have been through it know the answers’: stakeholders’ perspectives on improving healthcare systems for end-of-life care in chronic obstructive pulmonary disease
title_full_unstemmed ‘People that suffer or have been through it know the answers’: stakeholders’ perspectives on improving healthcare systems for end-of-life care in chronic obstructive pulmonary disease
title_short ‘People that suffer or have been through it know the answers’: stakeholders’ perspectives on improving healthcare systems for end-of-life care in chronic obstructive pulmonary disease
title_sort people that suffer or have been through it know the answers stakeholders perspectives on improving healthcare systems for end of life care in chronic obstructive pulmonary disease
topic Chronic Obstructive Pulmonary Disease
Healthcare network
Quality health care
Healthcare systems
url https://doi.org/10.1186/s12913-023-10431-9
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