title: Epilepsy--giving the diagnosis. A survey of British paediatric neurologists.
abstract: Adult-centred studies continue to show poor information provision and understanding in people with epilepsy. This study explores whether paediatric neurologists work within a consultation framework designed to meet information needs. A questionnaire on how to give the diagnosis was sent to 32 UK Paediatric Neurologists. Consultation content was largely determined intuitively rather than on a shared knowledge of the process involved. Little consensus was identified in relation to analogy and the usefulness or awareness of available unevaluated literature; but most acknowledged the value of a specialist epilepsy nurse. Most responses were based on a typical medical agenda but less than 20% addressed emotional responses and adaptation. Three approaches were identified-'pro-active' (running the risk of overload but recognising the right of parents to information), 'reactive' (more individually tailored, but assumes doctors can judge parental reactions) and 'drip-feed' (protective and pre-selecting topics to meet the situation). Our aim to establish a guideline proved impossible. Further study should develop more detailed models of the disclosure process, and identify epilepsy explanations that can be consumer-tested.
authors.affiliation: Applied Psychology, John Moore's University, Liverpool, UK.
authors.forename: Cliff
authors.initials: C
authors.lastname: Cunningham
authors.forename: Richard
authors.initials: R
authors.lastname: Newton
authors.forename: Richard
authors.initials: R
authors.lastname: Appleton
authors.forename: Gwilym
authors.initials: G
authors.lastname: Hosking
authors.forename: Ian
authors.initials: I
authors.lastname: Mckinlay
mesh_terms: D000328:Adult; D002648:Child; D002675:Child, Preschool; D003625:Data Collection; D004827:Epilepsy / Q000175:diagnosis* / Q000451:nursing / Q000523:psychology; D005260:Female; D006801:Humans; D008297:Male; D009462:Neurology; D009720:Nurse Clinicians; D010290:Parents / Q000193:education / Q000523:psychology; D010348:Patient Care Team; D010353:Patient Education as Topic; D010817:Physician-Patient Relations; D012017:Referral and Consultation; D014342:Truth Disclosure; D006113:United Kingdom