| Title: | The Irish Lung Fibrosis Association’s Multi-Stakeholder World Café on Pulmonary Fibrosis Services in Ireland During Covid-19 and Beyond |
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| Author(s): | N Cassidy E Judge G O’Dowd T Shone AM Russell |
| Institution: | Irish Lung Fibrosis Association |
| Poster: | Click to view poster |
| Category: | ILD |
| Abstract: | The Irish Lung Fibrosis Association’s Multi-Stakeholder World Café on Pulmonary Fibrosis Services in Ireland During Covid-19 and Beyond. 1Nicola Cassidy, 2Eoin Judge, 1Gemma O’Dowd, 3Tony Shone, 4Anne-Marie Russell. 1Irish Lung Fibrosis Association, 2Connolly Hospital, Dublin, 2Invisio Ltd. Wicklow, 4University of Exeter, Exeter, United Kingdom. The Irish Lung Fibrosis Association (ILFA) hosted a virtual World Café forum to identify key stakeholders’ experiences of healthcare services for pulmonary fibrosis during COVID-19 and priorities for future care. Eight groups of mixed patients, caregivers, healthcare professionals and industry partners discussed (1) Diagnostics, (2) Healthcare Supports, (3) Psychological Support, (4) Integrated Care. Rotating group discussions were facilitated and recorded by the eight leaders. The forum was anonymously evaluated. Seventy-two people participated. Discussions revealed most patients experience significant delays in diagnosis; paucity of access to dietetic advice, palliative care, social support, and psychological services for patients and caregivers, and lack of integrated care across hospital and community-based services. The lack of education and emotional support at diagnosis causes distress for patients and families. Post COVID-19, a blend of face-to-face and virtual care, considering patient preference, could improve future healthcare access. Fifty-three participants (74%) completed the post-event survey. 96% agreed/strongly agreed that the World Cafe was helpful and 92% agreed/strongly agreed that they were able to get their views across during the event. The findings of the World Café indicate that a National Clinical Programme for pulmonary fibrosis is required to improve diagnosis and ensure equity of access for healthcare supports. |
