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

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.

Health system preparedness & community participation in Japanese encephalitis/acute encephalitis syndrome (JE/AES) prevention in a tribal district of Odisha, India

“…Research and policy in some Asian countries have encapsulated the ‘One Health’ principle of ensuring optimal protection for humans, animals and the environment 25 26 . The previous studies emphasized the need for an integrated multi-pronged approach on vector control, hygiene and sanitation among tribal populations with inter-departmental cooperation to prevent outbreaks 27 28 29 . Our findings suggest the need for periodic orientation and training among healthcare providers in endemic districts.…”

A Tale of Two Brothers: Familial Voltage-Gated Potassium Channel Autoimmune Encephalitis

“…For neuroimmune diseases, targeted immunosuppression can stop or decrease the current immune insult on the body, reduce the likelihood of recurrence and long-term neuropsychiatric sequalae, and decrease morbidity and mortality. Clear communication with the patients and their parents on the illness trajectory and a multidisciplinary rehabilitation process can assist recovery and improve outcomes [8].…”

Neurodevelopmental outcomes in paediatric immune-mediated and autoimmune epileptic encephalopathy

“…The development of similar tools to predict ultimate clinical outcomes using prospective standardized patient datasets should be the aim of future trials. Consideration should also be given to including a qualitative component in long-term outcome studies, in order to capture patient and family perspectives at crucial time points during recovery 47 .…”