“It’s been a hard year”: How families who have children with disabilities and chronic health conditions experience the COVID-19 pandemic

Sterman, Julia; Merighi, Joseph

Abstract

Background
Families of children with disabilities and chronic health conditions experience unique challenges associated with school, therapies, and social supports. However, little is known about the COVID-19 pandemic’s influence on these families.

Aims
To understand the lived experiences of families with children with disabilities and chronic health conditions during the COVID-19 pandemic.

Methods and Procedures
We gathered narrative accounts from 25 mothers of children with disabilities and chronic health conditions using individual interviews (n = 19) and one focus group (n = 6). A phenomenological approach was used to analyze the data.

Outcomes and Results
Three overarching themes were identified: isolation, connection, and thriving. Families experienced isolation due to the pandemic causing stress and poor mental health; maintained social connections with other family members, friends, and care providers using virtual platforms; and discovered unexpected benefits from the pandemic including a better understanding of their children and a slower pace of life.

Conclusions and Implications
Therapy and support for children with disabilities and their families should prioritize reducing everyday stress, developing social connections that leverage existing networks and identify potential new ones, implementing approaches that build on children’s strengths, and maintaining choice in delivery of professional and peer-led support.

Citation

Sterman, J., & Merighi, J. (2024). “It’s been a hard year”: How families who have children with disabilities and chronic health conditions experience the COVID-19 pandemic. Children and Youth Services Review, 164, Article 107858. https://doi.org/10.1016/j.childyouth.2024.107858

• Journal Article Type: Article
• Acceptance Date: Aug 10, 2024
• Online Publication Date: Aug 13, 2024
• Publication Date: 2024-09
• Deposit Date: Aug 19, 2024
• Publicly Available Date: Aug 19, 2024
• Journal: Children and Youth Services Review
• Print ISSN: 0190-7409
• Publisher: Elsevier
• Peer Reviewed: Peer Reviewed
• Volume: 164
• Article Number: 107858
• DOI: https://doi.org/10.1016/j.childyouth.2024.107858
• Keywords: COVID-19, Disabilities, Children, Immunocompromised, Well-being