Parental experience of having a child with hypoxic ischaemic encephalopathy: a qualitative study
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Objective
To explore hypoxic ischaemic encephalopathy (HIE) families’ experiences of care in the NHS and the impact of HIE on families.
Design
Geographically maximum variation sampled semi-structured interviews (n=28) 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 United Kingdom (UK), covering 84% (11/12) of the UK’s regional neonatal networks, known as Operational Delivery Networks.
Findings
Three themes with eight sub-themes were generated from the interview data. 1) The life-changing diagnosis of HIE: Parents described loss of stability & opportunity to parent, ongoing mental turmoil, and how the diagnosis led to transformation. 2) Balancing hope with facts: Parents unpacked 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 support family wellbeing, this work identifies priority improvement areas. Embedding trauma-informed care, strengthening transparent and sensitive communication around prognostic uncertainty, and improving care co-ordination will help families feel seen, heard, and supported throughout their journey.
SUMMARY
What is already known on this topic
- Single centre studies demonstrate receiving a HIE diagnosis and having a baby undergo therapeutic hypothermia treatment is traumatic for families.
- Little is known about the experiences of families affected by HIE in the NHS, particularly after neonatal discharge.
What this study adds
- This UK-wide study demonstrates the profound and life changing impact of HIE on families.
- Parents cherish their children and may experience personal growth after HIE; however, family well-being can be undermined by disability-based discrimination, poor communication and inadequately resourced health, education and social care.
How this study might affect research, practice or policy
- These findings support embedding trauma-informed care, encouraging transparent yet sensitive communication around diagnosis and prognosis, and improving care co-ordination to help families.
