Navigating the COVID-19 pandemic: Experiences and self-management approaches adopted by people with interstitial lung disease

Author:

Tikellis Gabriella12ORCID,Corte Tamera234,Glaspole Ian N125,Goh Nicole S L5678,Khor Yet H1567,Wrobel Jeremy910,Symons Karen5,Fuhrmeister Lisa67,Glenn Laura34,Chirayath Shiji9,Troy Lauren K234,King Bill1,Holland Anne E12711

Affiliation:

1. Department of Immunology and Pathology, Central Clinical School, Monash University, Melbourne, VIC, Australia

2. NHMRC Centre of Research Excellence in Pulmonary Fibrosis, Sydney, NSW, Australia

3. Respiratory Medicine, Royal Prince Alfred Hospital, Sydney, NSW, Australia

4. Central Clinical School, The University of Sydney, Sydney, NSW, Australia

5. Department of Respiratory Medicine, Alfred Health, Melbourne, VIC, Australia

6. Department of Respiratory and Sleep Medicine, Austin Health, Melbourne, VIC, Australia

7. Institute for Breathing and Sleep, Melbourne, VIC, Australia

8. Faculty of Medicine, University of Melbourne, Melbourne, VIC, Australia

9. Advanced Lung Disease Unit, Fiona Stanley Hospital, Perth, WA, Australia

10. School of Medicine, University of Notre Dame Australia, Fremantle, WA, Australia

11. Department of Physiotherapy, Alfred Health, Melbourne, VIC, Australia

Abstract

Background People with interstitial lung disease (ILD) were deemed more vulnerable to the SARS-CoV-2 virus and isolated as a means of reducing risk of infection. This study examined the impact of the pandemic on daily life, psychological wellbeing and access to healthcare and identified approaches undertaken to remain safe. Methods Four specialist clinics in tertiary centres in Australia (Victoria: two sites; New South Wales: one site; Western Australia: one site) recruited patients with ILD during an 8-week period from March 2021. Semi-structured telephone interviews were conducted with transcripts analysed using principles of grounded theory. Results Ninety participants were interviewed between April and December 2021. Participants were predominantly female, former smokers with an average age of 66 years. IPF and connective tissue-ILD being the most common subtypes. Five main themes were identified: vulnerability reduced social interaction and isolation, access to healthcare services and support, staying active, emotional and psychological impact. Self-management strategies included staying active both physically and mentally. Discussion Self-management was key to managing the impact of the pandemic. In combination with advances in technology, implementation of strategies for monitoring wellbeing and support for self-management provides an opportunity to leverage the lessons learnt to ensure a more individualised model of care for people with ILD.

Funder

National Health and Medical Research Council

Publisher

SAGE Publications

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