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

Background: Encephalitis, characterised as inflammation of the brain tissue, is an important cause of acquired brain injury in children. Objective clinical outcomes vary significantly between affected patients, however they do not always correlate with quality of life as reported by parents. The aim of this study was to explore how parents experience and interpret outcomes in relation to their child who has been affected by encephalitis.
Methods: Data were derived from in-depth, semi-structured interviews, with 15 parents of 12 children and young people affected by encephalitis. Paediatric cases were identified from the retrospective arm of the research programme 'ENCEPH-UK-Understanding and Improving the Outcome of Encephalitis', and from the prospective UK childhood meningitis and encephalitis cohort study (UK-ChiMES, 2012 to 2016). Data were analysed thematically.
Results: Parents' perspectives on important outcomes for their child and family changed during the different stages of the encephalitis illness trajectory: from acute illness, recovery and rehabilitation, then reintegration into everyday life. Parents' understanding of their children's overall outcome was informed by their own experiences, involving comparisons with other children and reflections on their child's problems before, during and after the acute illness.
Conclusion: Outcomes in paediatric encephalitis need to be understood in terms of the context of the patient and family experience as well as the timeframe of recovery. The research highlights the need to include more patient, parent and/or carer reported outcome measures during patient assessment, and that assessment should be repeated during recovery as family concerns change. In the longer term, these parameters could be included in clinical and rehabilitation practice to further support child recovery.
Competing Interests: We have read the journal’s policy and the authors of this manuscript have the following competing interests: TS is supported by the National Institute for Health Research (NIHR) Health Protection Research Unit in Emerging and Zoonotic Infections (Grant No. IS-HPU-1112-10117), NIHR Global Health Research Group on Brain Infections (No. 17/63/110), and the European Union’s Horizon 2020 research and innovation program ZikaPLAN (Preparedness Latin America Network), grant agreement No. 734584. MS is supported via salary awards from the BC Children’s Hospital Foundation, the Canadian Child Health Clinician Scientist Program and the Michael Smith Foundation for Health Research. He has been an investigator on studies funded by Pfizer, Merck, VBI Vaccines and GlaxoSmithKline. All funds have been paid to his institute, and he has not received any personal payments. AJP reports a grant from Okairos which ended in 2016, outside the submitted work. AJP is Chair of UK Dept. Health and Social Care’s Joint Committee on Vaccination & Immunisation & the European Medicines Agency Scientific Advisory Group on Vaccines and is a member of the World Health Organisation’s Strategic Advisory Group of Experts on Immunisation. This does not alter our adherence to PLOS ONE policies on sharing data and materials.