Understanding parental perspectives on outcomes following paediatric encephalitis: A qualitative study
Autoři:
Jennifer Lemon aff001; Jessie Cooper aff003; Sylviane Defres aff001; Ava Easton aff001; Manish Sadarangani aff006; Michael J. Griffiths aff001; Andrew J. Pollard aff009; Tom Solomon aff001; Rachel Kneen aff001
Působiště autorů:
Institute of Infection and Global Health, University of Liverpool, Liverpool, United Kingdom
aff001; Alder Hey Children’s NHS Foundation Trust, Liverpool, United Kingdom
aff002; School of Health Sciences, Division of Health Services Research and Management, City University of London, London, United Kingdom
aff003; Tropical Infectious Diseases Unit, Royal Liverpool University and Broadgreen NHS Trust, Liverpool, United Kingdom
aff004; Encephalitis Society, Malton, United Kingdom
aff005; Vaccine Evaluation Center, BC Children’s Hospital Research Institute, Vancouver, Canada
aff006; Division of Infectious Diseases, Department of Pediatrics, University of British Columbia, Vancouver, Canada
aff007; NIHR Health Protection Research Unit in Emerging and Zoonotic Infections, University of Liverpool, Liverpool, United Kingdom
aff008; Oxford Vaccine Group, Department of Paediatrics, University of Oxford, Oxford, United Kingdom
aff009; NIHR Oxford Biomedical Research Centre, Oxford, United Kingdom
aff010; Walton Centre NHS Foundation Trust, Liverpool, United Kingdom
aff011
Vyšlo v časopise:
PLoS ONE 14(9)
Kategorie:
Research Article
doi:
https://doi.org/10.1371/journal.pone.0220042
Souhrn
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.
Klíčová slova:
Medicine and health sciences – Infectious diseases – Infectious diseases of the nervous system – Encephalitis – Neurology – Pediatrics – Child health – Public and occupational health – Pathology and laboratory medicine – Etiology – Biology and life sciences – Psychology – Behavior – Parenting behavior – Social sciences – Sociology – Education – Schools – Human families – People and places – Population groupings – Age groups – Children – Families
Zdroje
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