A qualitative study of patient experiences and expectations around hospital care during exacerbations of chronic obstructive pulmonary disease – a health CASCADE study

TL;DR

This study explores the experiences and expectations of severe COPD patients during hospital care for exacerbations, highlighting areas for improvement in hospital procedures and support.

Contribution

The study introduces a qualitative approach using co-creation workshops to understand COPD patients' hospital experiences and expectations.

Findings

Patients reported a lack of trustworthy guidance and increased vulnerability during hospitalisation.

Discharge issues and poor information exchange were identified as key deficiencies in COPD hospital care.

Patients appreciated support from COPD nurses and home care teams, suggesting the need for improved care continuity.

Abstract

Hospital care is critical when assessing the overall quality of chronic obstructive pulmonary disease (COPD) care, particularly for people living with severe COPD who are frequently hospitalised due to exacerbations. The hospitalisation experience for people with COPD is often complex, involving various interactions and has been reported to be suboptimal. A comprehensive understanding of these experiences is lacking. With the intention of informing a holistic approach in COPD hospital care, this study aimed to explore the experiences and expectations of individuals with severe COPD regarding hospital care due to exacerbations of COPD.

Acknowledging the complexity of interactions within the studied scenarios, this research employed a qualitative study design, utilising co-creation workshops for data collection. A total of 13 participants were involved in the data collection process. Five people with severe COPD were recruited using purposive sampling. In addition, one family member, four healthcare practitioners, one digital health program designer, and two hospital managers were recruited through convenience sampling. Data were collected during three co-creation workshops. During each workshop, participants were divided into subgroups focused on specific topics. Relevant transcripts from these subgroup discussions were chosen for analysis, which was conducted using qualitative content analysis.

The analysis resulted in four categories that illustrate both the experiences and expectations of people with COPD regarding hospital care from admission to discharge: lack of trustworthy guidance, increased vulnerability during hospitalisation, discharge issues, and advocacy for COPD recognition. Our findings reveal some deficiencies, particularly in admission procedures, information exchange, healthcare interactions, and transitions from hospital to home. At the same time, patients also expressed appreciation for the continuous support provided by COPD nurses and home care teams.

This study highlights the need for person-centred care in managing COPD exacerbations. It identifies key interventions such as early help-seeking, better patient education, staff training, care continuity, improved discharge services, and public awareness. Emphasising individualised experiences, it calls for familiar care settings, collaborative discharge planning, and integration of home care to enhance hospital care quality.

The online version contains supplementary material available at 10.1186/s12890-025-04024-x.