The impact of the COVID-19 pandemic on families of children with medical complexity: A qualitative study of caregivers' experiences. Child Care Health Dev 2024 Jan;50(1):e13187
Date
10/19/2023Pubmed ID
37855455DOI
10.1111/cch.13187Scopus ID
2-s2.0-85174263929 (requires institutional sign-in at Scopus site) 2 CitationsAbstract
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.
Author List
Tager JB, Kenney AE, Lim PS, Everhart SA, Johaningsmeir S, Balistreri KA, Morgan-Tautges A, Berridge KE, Brophey M, Rothschild CB, Scanlon MC, Davies WH, Lee KJ, Schnell JLAuthors
Samantha Everhart PhD Assistant Professor in the Pediatrics department at Medical College of WisconsinK Jane Lee MD Interim Chief, Professor in the Pediatrics department at Medical College of Wisconsin
Kathryn A. Ritchie MS Instructor in the Pediatrics department at Medical College of Wisconsin
Charles Baron Rothschild MD Associate Professor in the Pediatrics department at Medical College of Wisconsin
Matthew C. Scanlon MD Professor in the Pediatrics department at Medical College of Wisconsin
Jessica Schnell MD Assistant Professor in the Pediatrics department at Medical College of Wisconsin
MESH terms used to index this publication - Major topics in bold
CaregiversChild
Female
Humans
Pandemics
Parents
Qualitative Research