‘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
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Media type:
E-Article
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
Description:
<jats:title>Abstract</jats:title><jats:sec>
<jats:title>Background</jats:title>
<jats:p>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.</jats:p>
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<jats:title>Design</jats:title>
<jats:p>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.</jats:p>
</jats:sec><jats:sec>
<jats:title>Methods</jats:title>
<jats:p>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.</jats:p>
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<jats:title>Results</jats:title>
<jats:p>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.</jats:p>
</jats:sec><jats:sec>
<jats:title>Conclusion</jats:title>
<jats:p>Stakeholders provided multiple healthcare system-level responses to end-of-life care in COPD that could inform healthcare service design and clinical quality improvement.</jats:p>
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