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"We Could Hold Our Own Here at Home": Longitudinal Experience of COVID-19 Lockdowns in Parents With Children Affected
Carlee Gilbert1, Andrew Bush2, Kate M Bennett1
1Institute for Population Health, University of Liverpool, England, UK.
Insights
Parents of children with interstitial lung disease (chILD) navigated COVID-19 lockdowns by adapting risk management strategies, finding routine, and accepting a "new normal" of living with the virus.
Area of Science:
- Pediatric Pulmonology
- Rare Diseases
- Public Health
Background:
- COVID-19 pandemic necessitated global quarantines.
- Children with interstitial lung disease (chILD) were identified as clinically extremely vulnerable (CEV).
- Limited understanding of COVID-19's impact on pediatric chronic respiratory conditions.
Purpose of the Study:
- To explore UK parents' experiences of COVID-19 lockdowns with children diagnosed with chILD.
- To understand parental adaptation and risk management strategies during the pandemic.
- To identify factors contributing to resilience in rare disease caregivers during a public health crisis.
Main Methods:
- Qualitative longitudinal research design.
- Two interview time points with 8 participants recruited from chILD patient organizations and online communities.
- Interviews focused on lockdown experiences, support systems, media coverage, and pandemic adaptation strategies.
Main Results:
- Key themes identified were uncertainty and adaptation.
- Parents developed and implemented risk management strategies for pandemic isolation.
- Established routines, positive family bonding, and reluctant acceptance of COVID-19 as a "new normal" were reported.
- Evolving risk management strategies reflected changing pandemic information.
Conclusions:
- Parental adaptation and resilience are crucial for managing rare diseases during pandemics.
- Understanding the experiences of chILD families provides valuable insights for healthcare policy.
- Further research into caregiver traits and resilience is recommended for effective pandemic support.
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 pediatric 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 organizations 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 enquired 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.
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