The impact of the COVID‐19 pandemic on families of children with medical complexity: A qualitative study of caregivers' experiences

The impact of the COVID‐19 pandemic on families of children with medical complexity: A qualitative study of caregivers' experiences

Background Families of children with medical complexity (CMC) have been negatively affected by the COVID‐19 pandemic, experiencing challenges such as decreased access to services, increased financial hardship and increased isolation. However, there are few qualitative studies which explore parental...

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Bibliographic Details
Published in:Child : care, health & development Vol. 50; no. 1; pp. e13187 - n/a
Main Authors: Tager, Julia B., Kenney, Ansley E., Lim, Paulina S., Everhart, Samantha A., Johaningsmeir, Sarah, Balistreri, Kathryn A., Morgan‐Tautges, Amy, Berridge, Kevin E., Brophey, Maura, Rothschild, Charles B., Scanlon, Matthew C., Davies, W. Hobart, Lee, K. Jane, Schnell, Jessica L.
Format: Journal Article
Language:English
Published: England Blackwell Publishing Ltd 01-01-2024
Subjects:
Access
Caregivers
Caregivers - psychology
Child
Children
Complex patients
COVID-19
Emotional support
Family (Sociological Unit)
Female
Health care industry
Health services
Health status
Humans
Medical Services
Pandemics
Parents - psychology
Qualitative Research
Social isolation
Support services
telehealth
Telemedicine
telehealth
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Summary:Background Families of children with medical complexity (CMC) have been negatively affected by the COVID‐19 pandemic, experiencing challenges such as decreased access to services, increased financial hardship and increased isolation. However, there are few qualitative studies which explore parental experiences. The aim of the present study was to describe the impact of the COVID‐19 pandemic on families of CMC. Methods Caregivers of CMC were recruited from a large hospital in the Midwestern United States. They completed a semistructured qualitative interview assessing the impact of COVID‐19 on their child's care, which was analysed using interpretive phenomenological analysis. Results Twenty caregivers who were predominantly White, married and female participated. Emergent themes included the importance of protecting their child's health to ensure their physical safety, greater social isolation and missed medical services related to concerns about exposure, clinic closures and/or other logistical changes. Participants noted that the convenience of telehealth was a positive outcome of COVID‐19 that facilitated care while reducing time and resource challenges. Conclusions This study highlights the importance of protecting the health of CMC through continued safe access to in‐person or telehealth services. It is important to prioritise emotional support services for families of CMC as they have experienced increased stress and social isolation during and after the COVID‐19 pandemic. This topic should be explored among diverse families with CMC across multiple healthcare systems.
Bibliography:Funding information
This work was supported by internal funding from the Medical College of Wisconsin Department of Pediatrics. Julia B. Tager, MS and Kathryn A. Balistreri were supported by the UWM Cialdini Fellowship.
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ISSN:0305-1862
1365-2214
DOI:10.1111/cch.13187