Aim To explore the lived experiences of parents caring for their child following a severe to moderate acquired brain injury (ABI).

Methods A Heideggerian phenomenological approach was used and the research set within the naturalistic paradigm. Eight parents were identified using purposive sampling. Each parent was interviewed on a one-to-one basis using semi-structured interviews. The interviews were typed up verbatim and the data were analysed using thematic analysis.

Findings Every parent acknowledged the need to maintain hope. The other themes identified were: the effects on the child post ABI, the need for accurate information, emotional support, effects on the family, fear of death, transition, family accommodation and funding.

Conclusion Following a childhood brain injury it is important that parents can maintain a sense of hope and receive emotional support and accurate information. Staff could use these research findings to increase their awareness and inform their own practice.