The centrality of healthcare and education interactions - An Interpretive Phenomenological Analysis of experiences of parents of children with Ehlers-Danlos Syndrome.

This is one of the first qualitative studies to gain an insight into the lived experiences of parenting a child with EDS. Findings had systemic implications. Specifically, we demonstrate the need for raising awareness in health and educational professionals about how to better support families to support the child, as well as the importance of promoting effective advocacy skills in parents.