Needs among persons with advanced COPD and their informal caregivers: a multi-perspective qualitative study focusing on the potential role of palliative care.
Kira Schmidt-Stiedenroth, Julia Salandi, Alexandra Schmidt, Balam Er Dedekarginoglu, Stefanie Paniczek, Manuela Schallenburger, Anette Scholz, Jacqueline Schwartz, Kathrin Fricke, Stefanie Keymel, Achim Mortsiefer, Martin Neukirchen, Adrian Loerbroks
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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.
期刊介绍：
BMC Pulmonary Medicine is an open access, peer-reviewed journal that considers articles on all aspects of the prevention, diagnosis and management of pulmonary and associated disorders, as well as related molecular genetics, pathophysiology, and epidemiology.
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