Self-management for pulmonary fibrosis: Insights from people living with the disease and healthcare professionals

Objective: People with pulmonary fibrosis (PF) consider self-management essential for maintaining health. This study aims to explore the needs and expectations of PF self-management from the patient and healthcare professionals (HCPs) perspectives. Methods: Semi-structured interviews were conducted with people with PF and HCPs. Purposive sampling was used to recruit participants. Thematic analysis was performed using the principles of grounded theory. Results: 18 individuals with PF and 15 HCPs were interviewed. Common self-management components reported included exercise, nutrition, maintaining healthy mind, avoiding infections, recognising deterioration and seeking help, managing symptoms and treatments, social support, and end-of-life planning. Both groups felt that effective self-management required individualised strategies, supports, and reliable information. People with PF identified access to personal health data and self-acceptance as part of self-management. HCPs highlighted the importance of accessible supports and managing patient expectations of disease course and treatments. Some HCPs concerned about missed detection of deterioration and suggested that self-management strategies for PF may differ to other lung diseases. Conclusion: This study identified components important for self-management in PF and provides a basis for designing a PF self-management package. Practice implications: Self-management of PF can be facilitated with individualised support from HCPs and reliable information that is accessible.