Lessons Learned from Caregivers of Children with Medical Complexity: Implications for Policy & Providers

As the number of children with medical complexity living at home continues to grow, so do their care needs. Feedback from parent/guardian caregivers of children with medical complexity provides insight that can help policy makers and healthcare providers to understand more about the care provided in the home. Focus groups, a qualitative study approach, were used to more fully understand the challenges faced by parents/guardian caregivers of children with medical complexity residing in Illinois. Focus groups were conducted in the spring of 2021 to examine the issues from the parent/guardian caregiver perspective. Three main themes emerged from the focus group discussions: navigation of the system is confusing; quality of care in the home needs improvement; and caregivers need more help in providing care. Review of the discussions provided an understanding of the experiences of parent/guardian caregivers of children with medical complexity. These findings have important implications for policy makers, public health and Title V Programs, home nursing agencies, and home nurses. It is imperative that systems level upstream solutions be implemented to address the systemic challenges related to care for the child with medical complexity at home.