Qualitative data derived from semi-structured interviews with 15 parents of 12 children and young people affected by encephalitis. Paediatric encephalitis cases were identified from the retrospective arm of the research programme ‘ENCEPH-UK-Understanding and Improving the Outcome of Encephalitis’, and the UK childhood meningitis and encephalitis cohort study (UK-ChiMES). Audio recorded interviews were transcribed, anonymised and then the data was analysed thematically. See the Meta data Read Me file for further information