Understanding parental perspectives on outcomes following paediatric encephalitis: A qualitative study

Area of Science:

• Pediatric Neurology
• Neuroinflammation
• Childhood Acquired Brain Injury

Background:

• Encephalitis, a significant cause of acquired brain injury in children, presents variable clinical outcomes.
• Parent-reported quality of life often diverges from objective clinical assessments in pediatric encephalitis cases.

Purpose of the Study:

• To explore parental experiences and interpretations of outcomes for children affected by encephalitis.
• To understand how parental perspectives on child outcomes evolve throughout the illness trajectory.

Main Methods:

• In-depth, semi-structured interviews were conducted with 15 parents of 12 children with encephalitis.
• Data were sourced from the ENCEPH-UK study and the UK-ChiMES cohort (2012-2016).
• Thematic analysis was employed to analyze interview data.

Main Results:

• Parental views on important child and family outcomes shifted across illness stages: acute, recovery, rehabilitation, and reintegration.
• Parents' interpretations of their child's overall outcome were influenced by personal experiences, comparisons with peers, and reflections on pre- and post-illness challenges.

Conclusions:

• Paediatric encephalitis outcomes require contextual understanding of patient and family experiences over time.
• Incorporating patient, parent, and carer-reported outcome measures into assessments, repeated during recovery, is essential.
• These measures can enhance clinical and rehabilitation practices to better support child recovery.