Pulmonary fibrosis patients seek personalized palliative care and guidance

People living with pulmonary fibrosis and their partners described palliative care that often felt standardized rather than tailored to their lives, according to a qualitative study involving 15 patients and 10 informal caregivers. Participants wanted to be recognized beyond their disease and to receive clear support while navigating care from diagnosis through end-of-life care.

The research combined one focus group, 13 individual semi-structured interviews and five dyadic interviews, the latter involving a patient and a partner. Data collection and analysis were conducted iteratively, and the researchers used reflexive thematic analysis following the methods of Braun and Clarke. The design was exploratory and qualitative, so it identifies experiences and perceived care needs rather than measuring the effectiveness of a palliative-care intervention.

Two central themes emerged: “See me as a person” and “Guide me through the trajectory.” The first captured patients’ desire to be recognized as individuals, with empathy, open communication and holistic care. The second reflected the need expressed by both patients and partners for clear guidance and support across the medical journey, including emotional, practical and logistical dimensions.

Patients emphasized that being acknowledged as a person beyond their disease mattered within palliative care. Their accounts indicated that care should attend to their experiences and needs in addition to the illness itself. Open communication and holistic care were central to this sense of recognition, while standardized approaches appeared insufficiently responsive to differences among patients.

Partners described their own needs within the study. They wanted to be valued and to receive information that enabled them to provide care and maintain a sense of control and security. This places the experiences of informal caregivers alongside those of patients rather than treating support as relevant only to the person diagnosed with pulmonary fibrosis. It also shows how the demands placed on partners can extend beyond practical caregiving to include recognition, information and support.

Across the interviews, participants identified gaps in care that the researchers linked to a “one-size-fits-all” approach. Patients reported a need for acknowledgment and support in anticipating future requirements, while partners emphasized the value of information and guidance. The findings therefore point to palliative care as a process that should provide continuing support through different stages of the medical journey, from diagnosis to end-of-life care.

Pulmonary fibrosis is described in the research as a progressive disease associated with reduced life expectancy and quality of life. Palliative care aims to optimize quality of life for patients and their informal caregivers. The researchers noted that previous studies have shown unmet palliative-care needs among people with pulmonary fibrosis, while the present work explores how patients and partners experience those needs in detail.

The findings are based on the accounts of a relatively small group: 15 patients and 10 informal caregivers. As a qualitative study, it does not establish how common each experience is or test whether a particular service model would improve outcomes. Instead, it identifies priorities that may guide improvements in palliative care, including more individualized recognition, clearer communication and support for both patients and the partners who care for them.

Subject of Research: Patient and partner experiences of palliative care for pulmonary fibrosis

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

Article References: Trapman, L., Dijksman, L. M., Grutters, J. C., Teunissen, S. C. C. M., & de Graaf, E. (2026). Experiences of palliative care for patients with pulmonary fibrosis: A qualitative exploration of patients and partners perspectives. PLOS One, 21(10), e0360649. https://doi.org/10.1371/journal.pone.0360649

Image Credits: AI Generated

DOI: 10.1371/journal.pone.0360649

Keywords: pulmonary fibrosis, palliative care, qualitative research, patient experience, informal caregivers, thematic analysis, care navigation, quality of life, Experiences, palliative, care, patients