Fibrotic interstitial lung disease - palliative care needs: a World-Café qualitative study.

Area of Science:

• Pulmonary Medicine
• Palliative Care Research
• Qualitative Health Research

Background:

• Palliative care is recognized as important for advanced fibrotic interstitial lung diseases (F-ILD).
• However, the specific palliative care needs of patients and caregivers across the disease course remain unclear.
• This study aimed to explore these needs within the Irish F-ILD population.

Purpose of the Study:

• To explore the palliative care requirements of patients and caregivers affected by fibrotic interstitial lung diseases (F-ILD).
• To identify optimal solutions for meeting the palliative care needs of the F-ILD population in Ireland.
• To establish the role of palliative care irrespective of disease progression.

Main Methods:

• A qualitative World-Café approach was employed.
• Thirty-nine diverse stakeholders, including patients, caregivers, and healthcare professionals, participated.
• Interactive small group discussions focused on palliative care and future planning.

Main Results:

• Palliative care is fundamental for F-ILD patients and caregivers, irrespective of disease progression.
• Identified unmet needs include psychological/social support, education, caregiver involvement, and practical/legal advice.
• Diagnosis was highlighted as a critical, distressing period requiring early palliative care integration.

Conclusions:

• Palliative care discussions for F-ILD should commence at the point of diagnosis.
• Integrating palliative care early can address service provision gaps identified in previous F-ILD charters.
• Enhanced integrated care, involving primary care practitioners, is recommended.