“We could hold our own here at home”: Longitudinal experience of
COVID-19 lockdowns in parents with children affected with Interstitial
Lung Disease.
Abstract
The global health emergency of COVID-19 in early 2020 placed much of the
population under quarantine. Interstitial Lung Disease in childhood
(chILD) was recommended to be a paediatric clinically extremely
vulnerable (CEV) group in April 2020 for shielding due to the unknown
health consequences of COVID-19 in children with chronic respiratory
conditions. This qualitative longitudinal research study explores how
chILD parents in the UK experienced COVID-19 lockdown from over two
interview time points. Participants ( n = 8) were recruited from
chILD patient organisations and online communities. Interview one
focused on the period between January 2020 to July 2020, gaining
personal insight into respondent’s experience of lockdowns, which
included questions on support systems and media coverage of COVID-19.
The second interview asked how respondents managed further UK lockdowns
between September 2020 and May 2021. The main themes were uncertainty
and adaptation. Respondents described how they navigated the UK
lockdowns and undertook various risk management strategies for pandemic
isolation. Once these were established, routine and positive family
bonding was reported, along with a reluctant acceptance of the COVID-19
virus and continued shielding. As new COVID-19 information emerged, risk
management strategies changed or remained for some respondents, bringing
a feeling of living with COVID-19 as a ‘new’ normal. Understanding the
unique insights people with rare diseases such as chILD face during a
global pandemic adds to policy and healthcare literature.
Recommendations include further study of caregiver traits and
resilience, essential facets of positive pandemic adaptation.