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

Abstract

Objective: To explore families' experiences of hypoxic ischaemic encephalopathy (HIE) care in the National Health Service (NHS) and the impact of HIE on families.

Design: Semistructured interviews (n=28) sampled to maximise variation, were conducted with parents of infants (born 2010-2024) who underwent therapeutic hypothermia for HIE. Data were analysed with reflexive thematic analysis.

Setting: Parents were recruited from across the UK, covering 84.6% (11/13) of the UK's regional neonatal networks, known as Operational Delivery Networks.

Findings: Three themes with eight subthemes were generated from the interview data. (1) The life-changing diagnosis of HIE: Parents described loss of stability and opportunity to parent, ongoing mental turmoil, and how the diagnosis led to transformation. (2) Balancing hope with facts: Parents opened up on how treasured their child is, the tension between hope and loss they experienced, and feelings of being kept in the dark. (3) Struggling to meet their child's needs: Parents outlined deficiencies in care infrastructure and battling disability-based discrimination.

Conclusions: 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.