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

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.