Labels and epilepsy - An online survey of patients and those close to them

Latica Friedrich; Ana Sruk; Ivan Bielen

doi:10.1016/j.yebeh.2019.01.015

Labels and epilepsy - An online survey of patients and those close to them

Epilepsy Behav. 2019 Mar:92:253-255. doi: 10.1016/j.yebeh.2019.01.015. Epub 2019 Feb 3.

Authors

Latica Friedrich¹, Ana Sruk², Ivan Bielen²

Affiliations

¹ Department of Neurology, "Sveti Duh" University Hospital, School of Medicine Josip Juraj Strossmayer, University of Osijek, Sveti Duh 64, Zagreb, Croatia. Electronic address: latica@kbsd.hr.
² Department of Neurology, "Sveti Duh" University Hospital, School of Medicine Josip Juraj Strossmayer, University of Osijek, Sveti Duh 64, Zagreb, Croatia.

PMID: 30726769
DOI: 10.1016/j.yebeh.2019.01.015

Abstract

Publications on the topic of appropriate labels for someone with diagnosed epilepsy have so far almost exclusively consisted of views of professionals in this field. We conducted an online study of patients treated for epilepsy and persons close to them with the aim of identifying which label they prefer, whether they oppose the term "epileptic", and which characteristics are related with their preferences. In total, 328 responses were analyzed. Subjects mostly favored "person-first" terminology ("person having epilepsy" and "person with epilepsy"), and 53.9% disapproved of the term "epileptic". Parents of patients are more likely than patients themselves to favor the label "person having epilepsy" and to disapprove of the label "epileptic". These results can help with shaping future terminology recommendations.

Keywords: Epilepsy; Epileptic; Labels; Language; Terminology.

MeSH terms

Adolescent
Adult
Aged
Epilepsy / classification*
Epilepsy / diagnosis
Epilepsy / psychology*
Female
Humans
Internet*
Male
Middle Aged
Parents / psychology*
Social Stigma*
Surveys and Questionnaires*
Young Adult