Joanna Y T Lee1, Gabriella Tikellis2, Ian Glaspole3, Yet H Khor4, Karen Symons5, Anne E Holland6. 1. Department of Allergy, Immunology and Respiratory Medicine, Monash University, Melbourne, Victoria, Australia. Electronic address: joanna.lee2@monash.edu. 2. Department of Allergy, Immunology and Respiratory Medicine, Monash University, Melbourne, Victoria, Australia. Electronic address: gabriella.tikellis@monash.edu. 3. Department of Respiratory and Sleep Medicine, Alfred Health, Melbourne, Victoria, Australia. Electronic address: i.glaspole@alfred.org.au. 4. Department of Respiratory and Sleep Medicine, Alfred Health, Melbourne, Victoria, Australia; Department of Respiratory and Sleep Medicine, Austin Health, Melbourne, Victoria, Australia; Institute for Breathing and Sleep, Melbourne, Victoria, Australia. Electronic address: yet.KHOR@austin.org.au. 5. Department of Respiratory and Sleep Medicine, Alfred Health, Melbourne, Victoria, Australia. Electronic address: K.Symons@alfred.org.au. 6. Department of Allergy, Immunology and Respiratory Medicine, Monash University, Melbourne, Victoria, Australia; Department of Respiratory and Sleep Medicine, Alfred Health, Melbourne, Victoria, Australia; Institute for Breathing and Sleep, Melbourne, Victoria, Australia; Department of Physiotherapy, Alfred Health, Melbourne, Victoria, Australia. Electronic address: a.holland@alfred.org.au.
Abstract
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.
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.