Date Published: September 16, 2019
Publisher: Public Library of Science
Author(s): Jennifer Lemon, Jessie Cooper, Sylviane Defres, Ava Easton, Manish Sadarangani, Michael J. Griffiths, Andrew J. Pollard, Tom Solomon, Rachel Kneen, Jonathan Mathers.
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.
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.
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.
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.
Encephalitis is a serious neurological condition, which can result in death or permanent disability . The incidence in children is 10.5–13.8 per 100,000 which equates to approximately 1–2 paediatric cases expected at an average district general hospital in the United Kingdom per year [1, 2]. The condition is characterised by brain tissue inflammation, resulting from a range of infections and immune-mediated processes . At illness onset, there is usually severe deterioration in the physical and mental functioning of those affected, with between 40–52% of paediatric patients requiring intensive care unit (ICU) admission [4–6]. Symptoms include: altered level of consciousness or abnormal behaviour, fever, vomiting, seizures, communication difficulties, limb weakness and headache [1, 4].
The 15 participants (11 mothers, three fathers and one step-father) were parents of 12 children and young people (cases), who had been affected by encephalitis. Encephalitis aetiologies included autoimmune encephalitis (n = 4), viral encephalitis (n = 3), clinical encephalitis, unknown aetiology (n = 2), bacterial encephalitis (n = 1), acute necrotising encephalitis of childhood (n = 1), and ADEM (n = 1). Three of the cases had made an apparent full recovery from their encephalitic illness as reported by their parents. The remainder had a range of ongoing difficulties. Demographic characteristics of the cases and their parents, and a summary of reported problems from the parent’s perspective, are shown in Table 1.
In this study, parents discussed the varying ways in which encephalitis impacted on their child and family. The findings show how parents’ concerns about their child’s outcome evolved over the course of the illness trajectory. Furthermore, we have highlighted how parental perspectives on outcomes, following acute brain injury secondary to encephalitis, are informed by comparing their child’s actual outcome in relation to theoretical scenarios. Many of the specific contextualised concerns described by our parents have been previously highlighted in other encephalitis narratives  and broader qualitative literature on acquired brain injury in children (which predominantly includes traumatic brain injury) [28, 29]. We have developed the existing knowledge base further by showing how these concerns specifically relate to parental perception of outcomes for their children.