Experiences of palliative care for patients with pulmonary fibrosis: A qualitative exploration of patients and partners perspectives

Background Pulmonary fibrosis is often a progressive disease associated with reduced life expectancy and quality of life. Palliative care aims to optimize quality of life for both patients and their informal caregivers. So far, multiple studies have shown unmet palliative care needs in patients with pulmonary fibrosis. This study explores the experiences and needs of patients with pulmonary fibrosis and their partners to identify opportunities for improving palliative care. Methods A qualitative study was performed with focus groups and individual semi-structured interviews with patients and their informal caregivers. Data collection and analysis were performed iteratively. A reflexive thematic analysis was performed, following the methods of Braun and Clarke. Results In total, fifteen patients and 10 informal caregivers participated. One focus group, 13 individual interviews, and 5 dyadic interviews were performed. Two themes were generated: ‘See me as a person’, and ‘Guide me through the trajectory’ with both two subthemes, reflecting the patient and partner perspectives. Patients seek recognition beyond their disease, valuing empathy, open communication, and holistic care. At the same time, both patients and partners express the need for clear guidance and support throughout the medical journey, from diagnosis to end of life care, including emotional, practical, and logistical aspects. Conclusions/discussion Patients and partners experience a ‘one-size-fits-all’ approach to care and reveal several gaps that can be improved. Patients expressed the importance of being acknowledged as a person beyond the disease and being supported in navigating care and anticipating future needs. Partners highlighted the need to be valued and to receive information that enables them to provide care and maintain a sense of control and security.