ArticlePloS one2019
Understanding parental perspectives on outcomes following paediatric encephalitis: A qualitative study.
Article in PloS one, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers, 1 of them a synthesis that pooled it.
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Who cites it
5 citing papers in PubMed, 1 synthesis or guideline pooled it, 8 citations in OpenAlex.
- How should we define a 'good' outcome from encephalitis? A systematic review of the range of outcome measures used in the long-term follow-up of patients with encephalitis.Clinical medicine (London, England) · 2022Pooled it
- Fatal Fulminant Epstein-Barr Virus (EBV) Encephalitis in Immunocompetent 5.5-Year-Old Girl-A Case Report with the Review of Diagnostic and Management Dilemmas.Biomedicines · 2024Article
- Article
- Health system preparedness & community participation in Japanese encephalitis/acute encephalitis syndrome (JE/AES) prevention in a tribal district of Odisha, India.The Indian journal of medical research · 2021Article
- A Tale of Two Brothers: Familial Voltage-Gated Potassium Channel Autoimmune Encephalitis.Cureus · 2020Article
Corrections and comments
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Authors and funding
9 authors at 4 institutions in 2 countries.
Funding
Abstract
backgroundEncephalitis, 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.
methodsData 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.
resultsParents' 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.
conclusionOutcomes 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.
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