title: 'Epileptic', 'epileptic person' or 'person with epilepsy'? Bringing quantitative and qualitative evidence on the views of UK patients and carers to the terminology debate.
abstract: How to refer to someone with epilepsy is a divisive topic. Arguments for and against different approaches, including traditional adjective labels, disability-first labels, and person-first terms have been presented. The preferences of those with epilepsy and their family and friends have, though, never been determined. This study provides this information for the first time. Via epilepsy interest groups and organizations in the UK and Republic of Ireland, 638 patients and 333 significant others completed an online survey. Three distinct phrases were presented: "They're epileptic" (traditional label), "They're an epileptic person" (disability-first) and "That person has epilepsy" (person-first). Participants identified which they preferred and explained their choices. Patients' median age was 39, with 69% having experienced seizures in the prior 12months. Significant others were typically parents. Most (86.7%) patients and significant others (93.4%) favored the person-first term. Traditional and disability-first terms were "Disliked"/"Strongly disliked". Regression found it was not possible to reliably distinguish between participants favoring the different terms on the basis of demographics. Qualitative analysis of answers to open-ended questions, however, revealed most favored person-first terminology as by not including the word 'epileptic' and by affirming personhood before disability, it was felt to less likely restrict a listener's expectations or evoke the condition's negative association. It was also considered to suggest the person being referred to might have some mastery over their condition. The findings indicate consensus amongst these key stakeholders others for the use of person-first terminology in English. A truly informed debate on the topic can now begin.
authors.affiliation: Department of Psychological Sciences, University of Liverpool, Liverpool, United Kingdom. Electronic address: adam.noble@liverpool.ac.uk.
authors.forename: Adam J
authors.initials: AJ
authors.lastname: Noble
authors.affiliation: Department of Psychological Sciences, University of Liverpool, Liverpool, United Kingdom.
authors.forename: Abbey
authors.initials: A
authors.lastname: Robinson
authors.affiliation: Department of Psychological Sciences, University of Liverpool, Liverpool, United Kingdom.
authors.forename: Darlene
authors.initials: D
authors.lastname: Snape
authors.affiliation: Department of Molecular and Clinical Pharmacology, University of Liverpool, Liverpool, United Kingdom.
authors.forename: Anthony G
authors.initials: AG
authors.lastname: Marson
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D003430:Cross-Sectional Studies; D004827:Epilepsy / Q000145:classification* / Q000453:epidemiology / Q000523:psychology*; D005260:Female; D033062:Friends / Q000523:psychology; D006801:Humans; D007494:Ireland / Q000453:epidemiology; D008297:Male; D008875:Middle Aged; D057240:Patient Preference / Q000523:psychology*; D036301:Qualitative Research; D009626:Terminology as Topic; D006113:United Kingdom / Q000453:epidemiology; D055815:Young Adult
keywords: Epilepsy; Language expression; Perception; Qualitative; Stigma