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1.
Artigo em Inglês | MEDLINE | ID: mdl-36294090

RESUMO

BACKGROUND: Physical activity (PA) is recommended in the management of patients with pulmonary fibrosis (PF) to improve health outcomes. Dance is one such form of PA which is meaningful, valuable, enjoyable and has demonstrated positive physical and mental health effects. METHODS: With pre-post design, 16 patients, members of the Irish Lung Fibrosis Association, were enrolled in this study. Once weekly, 75-min dance sessions were delivered for eight weeks via Zoom by an experienced choreographer. Participants completed Chronic Respiratory Questionnaire Self-Administered Standardised Format (CRQ-SAS) and European Quality of Life 5 Dimensions 3 Level Version (EQ-5D-3L) to assess self-rated quality of life. A paired-sample t-test was employed to assess the mean differences between the pre-and post-intervention scores. RESULTS: Most patients (78.57%) were aged over 60 years; with 71.43% diagnosed with pulmonary fibrosis more than 3 years ago. We performed an analysis of 10/16 participants who completed the intervention (5 males, 5 females). On CRQ-SAS scale we found, (a) dyspnoea-small to moderate magnitude improvement of 0.5-1.0 among 50%, (b) fatigue-small to moderate magnitude improvement of 0.5-1.0 among 40%, (c) emotional function-small to high magnitude improvement of 0.5-2.0 among 50%, (d) mastery-small magnitude improvement of 0.5 among 20%. Participants reported their health moderate to best on Visual Analogue Scale of EQ-5D-3L which improved by 1-3 scale among 40%. Mental health improved as percentage of not feeling anxious or depressed rose post event from 42.86% to 72.73%. CONCLUSION: Our findings demonstrate that a virtual dance intervention is acceptable, enjoyable and feasible for improving health outcomes among PF patients. More organised and continuous events in future may reveal cost-benefit ratio and impact on health outcomes.


Assuntos
Dança , Fibrose Pulmonar , Masculino , Feminino , Humanos , Pessoa de Meia-Idade , Idoso , Dança/psicologia , Estudos de Viabilidade , Qualidade de Vida , Inquéritos e Questionários
2.
Artigo em Inglês | MEDLINE | ID: mdl-34635541

RESUMO

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.

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