TY - JOUR
T1 - Fibrotic interstitial lung disease - palliative care needs
T2 - a World-Café qualitative study
AU - Cassidy, Nicola
AU - Fox, Lynn
AU - Love, Maria
AU - Byrne, Irene
AU - Doyle, Anne Marie
AU - Korn, Bettina
AU - Shanagher, Deirdre
AU - Shone, Tony
AU - Cullen, Matt
AU - Cullen, Teresa
AU - Mullaney, Philo
AU - O'Carroll, Noreen
AU - O'Dowd, Gemma
AU - O'Sullivan, Tom
AU - Russell, Anne Marie
N1 - Funding:
A-MR is a National Institute for Health Research (NIHR) Senior Nurse and Midwife Research Leader.
Publisher Copyright:
© Author(s) (or their employer(s)) 2021.
PY - 2021/10/11
Y1 - 2021/10/11
N2 - Objectives: The importance of palliative care in those with advanced fibrotic interstitial lung diseases (F-ILD) is recognised, but the palliative care requirements of patients and caregivers affected by F-ILD regardless of disease course are not established. We set out to explore this and identify optimal solutions in meeting the needs of a F-ILD population in Ireland. Methods: Implementing a World-Café qualitative research approach, we captured insights evolving, iteratively in interactive small group discussions in response to six predefined topics on palliative care and planning for the future. Thirty-nine stakeholders participated in the World-Café including 12 patients, 13 caregivers, 9 healthcare professionals, 4 industry representatives and 1 representative of the clergy. Results: Palliative care emerged as fundamental to the care and treatment of F-ILDs, regardless of disease progression. Unmet palliative care needs were identified as psychological and social support, disease education, inclusion of caregivers and practical/legal advice for disease progression and end-of-life planning. Participants identified diagnosis as a particularly distressing time for patients and families. They called for the introduction of palliative care discussions at this early-stage alongside improvements in integrated care, specifically increasing the involvement of primary care practitioners in referrals to palliative services. Conclusion: Patients and caregivers need discussions on palliative care associated with F-ILD to be included at the point of diagnosis. This approach may address persisting inadequacies in service provision previously identified over the course of the last decade in the UK, Ireland and European F-ILD patient charters.
AB - Objectives: The importance of palliative care in those with advanced fibrotic interstitial lung diseases (F-ILD) is recognised, but the palliative care requirements of patients and caregivers affected by F-ILD regardless of disease course are not established. We set out to explore this and identify optimal solutions in meeting the needs of a F-ILD population in Ireland. Methods: Implementing a World-Café qualitative research approach, we captured insights evolving, iteratively in interactive small group discussions in response to six predefined topics on palliative care and planning for the future. Thirty-nine stakeholders participated in the World-Café including 12 patients, 13 caregivers, 9 healthcare professionals, 4 industry representatives and 1 representative of the clergy. Results: Palliative care emerged as fundamental to the care and treatment of F-ILDs, regardless of disease progression. Unmet palliative care needs were identified as psychological and social support, disease education, inclusion of caregivers and practical/legal advice for disease progression and end-of-life planning. Participants identified diagnosis as a particularly distressing time for patients and families. They called for the introduction of palliative care discussions at this early-stage alongside improvements in integrated care, specifically increasing the involvement of primary care practitioners in referrals to palliative services. Conclusion: Patients and caregivers need discussions on palliative care associated with F-ILD to be included at the point of diagnosis. This approach may address persisting inadequacies in service provision previously identified over the course of the last decade in the UK, Ireland and European F-ILD patient charters.
UR - http://www.scopus.com/inward/record.url?scp=85171887002&partnerID=8YFLogxK
U2 - 10.1136/bmjspcare-2021-003249
DO - 10.1136/bmjspcare-2021-003249
M3 - Article
C2 - 34635541
AN - SCOPUS:85171887002
SN - 2045-435X
JO - BMJ Supportive and Palliative Care
JF - BMJ Supportive and Palliative Care
ER -