Patient and family perspectives of paediatric psychogenic non-epileptic seizures: A systematic review

• Published in: Seizure (London, England) England), 2019-10, Vol.71, p.279-285
• Main Authors: Dunne, Amanda, Carolan, Rory, Swords, Lorraine, Fortune, Gillian
• Format: Article
• Language: English
• Subjects: Adolescent; Child; Family - psychology; Family perspectives; Humans; Nonepileptic attack disorder; Nonepileptic events; Psychogenic nonepileptic seizures; Psychophysiologic Disorders - psychology; Seizures - psychology; Somatoform Disorders - psychology; Subjective experience; Systematic review
• ISSN: 1059-1311; 1532-2688
• DOI: 10.1016/j.seizure.2019.08.014

•The concept of legitimacy and its relationship with PNES was a recurring theme.•Young people with PNES experienced histories of personal and familial distress.•PNES were found to have a significant impact on the lives of young people.•Factors that may facilitate the young person in moving forward were discussed. Exploring the perspectives of those affected by psychogenic non-epileptic seizures (PNES) may be essential in learning more about the nature of this condition. The aim of this systematic review is to synthesise the evidence regarding the perspectives of children and adolescents with PNES, and the perspectives of their parents, caregivers and families. Studies were included if they (1) explored PNES in a paediatric population, (2) explored the perspectives of the child or adolescent with PNES, or the perspectives of their parents, caregivers or families, (3) were original research, and (4) were written in the English language. Eight studies were identified for inclusion following searching of CINAHL Complete, Medline (Ovid), PsycINFO, PubMed and Web of Science databases, along with additional hand searching of reference lists. Quality assessment of articles was conducted using the Critical Appraisal Skills Programme (CASP) qualitative checklist. Seven articles were deemed high quality, and one article was deemed moderate quality. Common threads across studies included: “legitimacy and the importance of understanding”, “distress and the social and emotional impact of PNES” and “moving forward”. Clinicians must take care in the delivery of the diagnosis; including the use of an appropriate name for this condition, and providing an explanation of PNES that is acceptable to the patient, as well as ensuring that follow-up support is provided. Further reviews are required that utilise more well-established quality appraisal scoring systems and with the inclusion of grey literature, which refers to evidence not published by commercial academic publishers.