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: 10.1371/journal.pone.0220042



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.

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


1. Kneen R, Michael BD, Menson E, Mehta B, Easton A, Hemingway C, et al. Management of suspected viral encephalitis in children–Association of British Neurologists and British Paediatric Allergy, Immunology and Infection Group National Guidelines. J Infect. 2012;64:449–77. doi: 10.1016/j.jinf.2011.11.013 22120594

2. Jmor F, Emsley HCA, Fischer M, Solomon T, Lewthwaite P. The incidence of acute encephalitis syndrome in Western industrialised and tropical countries. Virol J. 2008;5:134-. doi: 10.1186/1743-422X-5-134 18973679

3. Granerod J, Ambrose HE, Clewley JP, Walsh AL, Morgan D, Brown DWG, et al. Causes of encephalitis and differences in their clinical presentations in England: A multicentre, population-based prospective study. Lancet Infect Dis. 2010;10(12):835–44. doi: 10.1016/S1473-3099(10)70222-X 20952256

4. Hacohen Y, Wright S, Waters P, Vincent A, Lim MJ, Agrawal S, et al. Paediatric autoimmune encephalopathies: Clinical features, laboratory investigations and outcomes in patients with or without antibodies to known central nervous system autoantigens. J Neurol Neurosurg Psychiatry. 2012.

5. Rismanchi N, Gold JJ, Sattar S, Glaser C, Sheriff H, Proudfoot J, et al. Neurological Outcomes After Presumed Childhood Encephalitis. Pediatr Neurol. 2015;53:200–6. doi: 10.1016/j.pediatrneurol.2015.05.017 26220354

6. Bagdure D, Custer JW, Rao S, Messacar K, Dominguez S, Beam BW, et al. Hospitalized Children With Encephalitis in the United States: A Pediatric Health Information System Database Study. Pediatr Neurol. 2016;61:58–62. doi: 10.1016/j.pediatrneurol.2016.04.014 27353693

7. Wickstrom R, Fowler A, Bennet R, Eriksson M, Bogdanovic G. Review of the aetiology, diagnostics and outcomes of childhood encephalitis from 1970 to 2009. Acta Paediatr. 2017;106(3):463–9. doi: 10.1111/apa.13682 27886400

8. Khandaker G, Jung J, Britton PN, King C, Yin JK, Jones CA. Long‐term outcomes of infective encephalitis in children: A systematic review and meta‐analysis. Dev Med Child Neurol. 2016;58(11):1108–15. doi: 10.1111/dmcn.13197 27422743

9. Elbers JM, Bitnun A, Richardson SE, Ford-Jones EL, Tellier R, Wald RM, et al. A 12-year prospective study of childhood herpes simplex encephalitis: is there a broader spectrum of disease? Pediatrics. 2007;119(2):e399–407. doi: 10.1542/peds.2006-1494 17272602

10. Florance NR, Davis RL, Lam C, Szperka C, Zhou L, Ahmad S, et al. Anti-N-methyl-D-aspartate receptor (NMDAR) encephalitis in children and adolescents. Ann Neurol. 2009;66(1):11–8. doi: 10.1002/ana.21756 19670433

11. Mikaeloff Y, Caridade G, Husson B, Suissa S, Tardieu M. Acute disseminated encephalomyelitis cohort study: Prognostic factors for relapse. Eur J Paediatr Neurol. 2007;11:90–5. doi: 10.1016/j.ejpn.2006.11.007 17188007

12. Porter ME. What is value in health care? N Engl J Med. 2010;363(26):2477–81. doi: 10.1056/NEJMp1011024 21142528

13. Williamson PR, Altman DG, Bagley H, Barnes KL, Blazeby JM, Brookes ST, et al. The COMET Handbook: version 1.0. Trials. 2017;18(Suppl 3):280. doi: 10.1186/s13063-017-1978-4 28681707

14. Khandaker G, Jung J, Britton PN, King C, Yin JK, Jones CA. Long-term outcomes of infective encephalitis in children: a systematic review and meta-analysis. Dev Med Child Neurol. 2016;58(11):1108–15. doi: 10.1111/dmcn.13197 27422743

15. Rayamajhi A, Nightingale S, Bhatta NK, Singh R, Kneen R, Ledger E, et al. A preliminary randomized double blind placebo-controlled trial of intravenous immunoglobulin for Japanese encephalitis in Nepal. PLoS One. 2015;10(4):e0122608. doi: 10.1371/journal.pone.0122608 25886645

16. Kumar R, Tripathi P, Baranwal M, Singh S, Tripathi S, Banerjee G. Randomized, controlled trial of oral ribavirin for Japanese encephalitis in children in Uttar Pradesh, India. Clin Infect Dis. 2009;48(4):400–6. doi: 10.1086/596309 19143532

17. Solomon T, Nguyen Minh D, Wills B, Kneen R, Gainsborough M, Tran Vinh D, et al. Interferon alfa-2a in Japanese encephalitis: a randomised double-blind placebo-controlled trial. Lancet. 2003;361(9360):821. doi: 10.1016/s0140-6736(03)12709-2 12642049

18. Lewthwaite P, Begum A, Ooi MH, Faragher B, Lai BF, Sandaradura I, et al. Disability after encephalitis: development and validation of a new outcome score. Bull World Health Organ. 2010;88(8):584–92. doi: 10.2471/BLT.09.071357 20680123

19. Ramanuj PP, Granerod J, Davies NW, Conti S, Brown DW, Crowcroft NS. Quality of life and associated socio-clinical factors after encephalitis in children and adults in England: a population-based, prospective cohort study. PLoS One. 2014;9(7):e103496. doi: 10.1371/journal.pone.0103496 25072738

20. Ziebland S, Coulter A, Calabrese JD, Locock L. Understanding and Using Health Experiences: Improving patient care. Oxford: Oxford University Press; 2013.

21. Allard A, Fellowes A, Shilling V, Janssens A, Morris C, Beresford B. Key health outcomes for children and young people with neurodisability: Qualitative research with young people and parents. BMJ Open. 2014;4(4).

22. Harman NL, Bruce IA, Callery P, Tierney S, Sharif MO, O’Brien K, et al. MOMENT—Management of Otitis Media with Effusion in Cleft Palate: protocol for a systematic review of the literature and identification of a core outcome set using a Delphi survey. Trials. 2013;14:70. doi: 10.1186/1745-6215-14-70 23497540

23. Cooper J, Kierans C, Defres S, Easton A, Kneen R, Solomon T. Diagnostic Pathways as Social and Participatory Practices: The Case of Herpes Simplex Encephalitis. PLoS One. 2016;11(3):e0151145. doi: 10.1371/journal.pone.0151145 26960197

24. Gray DE. Doing qualitative research in the real world. third ed. London, California, New DelhiSingapore, Washington DC: Sage publications; 2014.

25. Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol 2006;3(2):77–101.

26. Cooper J, Kierans C, Defres S, Easton A, Kneen R, Solomon T. Care beyond the hospital ward: Understanding the socio-medical trajectory of herpes simplex virus encephalitis. BMC Health Serv Res. 2017;17(1).

27. Easton A. Life after encephalitis, a narrative approach. Oxford, New York: Routledge; 2016.

28. Tyerman E, Eccles FJR, Gray V. The experiences of parenting a child with an acquired brain injury: A meta-synthesis of the qualitative literature. Brain Inj. 2017:1–11.

29. Andersson K, Bellon M, Walker R. Parents’ experiences of their child’s return to school following acquired brain injury (ABI): A systematic review of qualitative studies. Brain Inj. 2016;30(7):829–38. doi: 10.3109/02699052.2016.1146963 27057776

30. World Health Organisation. Towards a Common Language for Functioning, Disability and Health: ICF, the international classification of functioning disability and health 2002. http://www.who.int/classifications/icf/icfbeginnersguide.pdf.

31. Brenner MH, Curbow B, Legro MWa. The Proximal-Distal Continuum of Multiple Health Outcome Measures: The Case of Cataract Surgery. Med Care. 1995(4):AS236.

32. Wilson IB, Cleary PD. Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes. JAMA. 1995;273(1):59–65. 7996652

33. Black N. Patient reported outcome measures could help transform healthcare. BMJ. 2013;346(7896).

Článek vyšel v časopise


2019 Číslo 9

Nejčtenější v tomto čísle

Tomuto tématu se dále věnují…


Zvyšte si kvalifikaci online z pohodlí domova

Ulcerative colitis_muž_břicho_střeva
Ulcerózní kolitida
nový kurz

Blokátory angiotenzinových receptorů (sartany)
Autoři: MUDr. Jiří Krupička, Ph.D.

Antiseptika a prevence ve stomatologii
Autoři: MUDr. Ladislav Korábek, CSc., MBA

Citikolin v neuroprotekci a neuroregeneraci: od výzkumu do klinické praxe nejen očních lékařů
Autoři: MUDr. Petr Výborný, CSc., FEBO

Zánětlivá bolest zad a axiální spondylartritida – Diagnostika a referenční strategie
Autoři: MUDr. Monika Gregová, Ph.D., MUDr. Kristýna Bubová

Všechny kurzy