Parental experience of having a child with hypoxic ischaemic encephalopathy: a qualitative study

This study highlights the profound and life-changing impact of HIE on families. Parents described cherishing their children and experiencing personal growth. However, many also characterised how challenges were intensified by disability-based discrimination, poor communication and gaps in support across health, education and social care systems.To prevent further trauma and to support family well-being, this work identifies priority improvement areas. Embedding trauma-informed care, strengthening transparent and sensitive communication around prognostic uncertainty, and improving care coordination will help families feel seen, heard and supported throughout their journey.