“It's like a forgotten issue sometimes …”: Qualitative study of individuals living and caring for people with chronic breathlessness

Abstract

Introduction This study aims to explore the perspectives of patients and carers with chronic breathlessness on current provision of care, care expectations, and self‐management needs to develop relevant health services and resources to improve clinical outcomes. Methods In‐depth semistructured interviews were conducted on patients living with chronic breathlessness and carers. Results Thirteen patients (cardiac, respiratory, and noncardiorespiratory) and two carers were interviewed (mean age 57 years, 47% female, median duration with breathlessness 5 years). Four main themes were identified: (1) living with breathlessness, (2) diagnosis delays, misdiagnosis, and knowledge gaps, (3) beyond curing disease: symptom relief and improving quality of life, and (4) self‐management and limited support for it. Conclusion Breathlessness has a high personal impact but remains a neglected condition in Australia. Patients suffer from lack of personal, community, and provider awareness, discontinuity of care, and too few clinical and self‐management options.