Needs among persons with advanced COPD and their informal caregivers: a multi-perspective qualitative study focusing on the potential role of palliative care.
8 affiliations
- 1Institute for Occupational, Social, and Environmental Medicine, Centre for Health and Society, Medical Faculty and University Hospital Düsseldorf, Heinrich Heine University Düsseldorf, Düsseldorf, Germany. [email protected].
- 2Institute for Occupational, Social, and Environmental Medicine, Centre for Health and Society, Medical Faculty and University Hospital Düsseldorf, Heinrich Heine University Düsseldorf, Düsseldorf, Germany.
- 3Institute of General Practice and Primary Care (iamag), Chair of General Practice II and Patient-Centredness in Primary Care, Witten/Herdecke University, Witten, Germany.
- 4Clinic for Cardiology, Pulmonology & Angiology, Medical Faculty and University Hospital Düsseldorf, Heinrich Heine University Düsseldorf, Düsseldorf, Germany.
- 5Interdisciplinary Centre of Palliative Care, Medical Faculty and University Hospital Düsseldorf, Heinrich Heine University Düsseldorf, Düsseldorf, Germany.
- 6Institute for eHealth and Healthcare Management, University of applied science, Flensburg, Germany.
- 7Clinic of Pneumology and Allergology, Center for Sleep Medicine and Respiratory Care, Institute of Pneumology, Bethanien Hospital, University of Cologne, Solingen, Germany.
- 8Department of Anaesthesiology, Medical Faculty and University Hospital Düsseldorf, Heinrich Heine University Düsseldorf, Düsseldorf, Germany.
Abstract
Objectives
To explore needs among persons with advanced COPD and informal caregivers, and to explore how palliative care can address those needs.Background
COPD is a common, progressive disease affecting lung function and represents a leading cause of death. Advanced COPD is associated with a high symptom burden and poor quality of life. Persons with advanced COPD may benefit from palliative care, but its use among persons with COPD remains limited, also in Germany.Methods
A qualitative, multi-perspective interview study was conducted with persons suffering from advanced COPD, informal caregivers, and formal caregivers (general practitioners, pulmonologists, and palliative care physicians). A total of 53 interviews were analysed following structuring (Kuckartz') as well as latent content analysis methods using MAXQDA.Results
Key needs were identified in the following domains (1) management of dyspnoea and anxiety, (2) home-based healthcare, (3) emergency planning and support, (4) psychosocial care, (5) organisational support, and (6) timely information about COPD and palliative care. Persons who had previously received PC reported various needs met in the first five areas.Conclusions
Persons with advanced COPD and their informal caregivers reported numerous needs. Persons receiving palliative care reported relief from various needs. Timely information about COPD's progression and palliative care could increase acceptance and thus use of palliative care among these persons and could consequently reduce or curtail the burden of living with advanced COPD.
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BibTeX
@article{schmidtstiedenroth2026needs,
title = {{Needs among persons with advanced COPD and their informal caregivers: a multi-perspective qualitative study focusing on the potential role of palliative care.}},
author = {Kira Schmidt-Stiedenroth and Julia Salandi and Alexandra Schmidt and Balam Er Dedekarginoglu and Stefanie Paniczek and Manuela Schallenburger and Anette Scholz and Jacqueline Schwartz and Kathrin Fricke and Stefanie Keymel and Achim Mortsiefer and Martin Neukirchen and Adrian Loerbroks},
journal = {BMC pulmonary medicine},
year = {2026},
month = oct,
doi = {10.1186/s12890-026-04828-5},
url = {https://europepmc.org/article/MED/42897575},
note = {CC BY},
}
RIS
TY - JOUR
TI - Needs among persons with advanced COPD and their informal caregivers: a multi-perspective qualitative study focusing on the potential role of palliative care.
AU - Kira Schmidt-Stiedenroth
AU - Julia Salandi
AU - Alexandra Schmidt
AU - Balam Er Dedekarginoglu
AU - Stefanie Paniczek
AU - Manuela Schallenburger
AU - Anette Scholz
AU - Jacqueline Schwartz
AU - Kathrin Fricke
AU - Stefanie Keymel
AU - Achim Mortsiefer
AU - Martin Neukirchen
AU - Adrian Loerbroks
PY - 2026
DA - 2026/10/19
JO - BMC pulmonary medicine
DO - 10.1186/s12890-026-04828-5
UR - https://europepmc.org/article/MED/42897575
AB - Objectives To explore needs among persons with advanced COPD and informal caregivers, and to explore how palliative care can address those needs.Background COPD is a common, progressive disease affecting lung function and represents a leading cause of death. Advanced COPD is associated with a high symptom burden and poor quality of life. Persons with advanced COPD may benefit from palliative care, but its use among persons with COPD remains limited, also in Germany.Methods A qualitative, multi-perspective interview study was conducted with persons suffering from advanced COPD, informal caregivers, and formal caregivers (general practitioners, pulmonologists, and palliative care physicians). A total of 53 interviews were analysed following structuring (Kuckartz') as well as latent content analysis methods using MAXQDA.Results Key needs were identified in the following domains (1) management of dyspnoea and anxiety, (2) home-based healthcare, (3) emergency planning and support, (4) psychosocial care, (5) organisational support, and (6) timely information about COPD and palliative care. Persons who had previously received PC reported various needs met in the first five areas.Conclusions Persons with advanced COPD and their informal caregivers reported numerous needs. Persons receiving palliative care reported relief from various needs. Timely information about COPD's progression and palliative care could increase acceptance and thus use of palliative care among these persons and could consequently reduce or curtail the burden of living with advanced COPD.
SN - 1471-2466
ER -