Benson Ailbhe, Lambert Veronica, Gallagher Pamela, O'Toole Stephanie, Shahwan Amre, Austin Joan K
Centre for Disability Studies, School of Psychology, University College Dublin, Dublin 4, Ireland.
School of Nursing and Human Sciences, Faculty of Science and Health, Dublin City University, Dublin 9, Ireland.
Epilepsy Behav. 2018 May;82:111-118. doi: 10.1016/j.yebeh.2018.02.015. Epub 2018 Mar 28.
The aim of this paper was to describe the development and psychometric evaluation of new Epilepsy Disclosure Scales (EDSs) for youths with epilepsy (YWE) and their parents.
Developing the EDSs for youths and parents comprised a number of stages, including questionnaire construction and item development for the new EDSs (consisting of a pilot and review of the newly developed EDSs) and psychometric evaluation of the measures to assess their appropriateness, factor structure, reliability, and validity. Psychometric properties were determined using a cross-sectional survey of 47 YWE and 72 parents.
Two scales were developed to assess the epilepsy disclosure behaviors of YWE and their parents; that is, the extent to which they tell and talk to others about the child's epilepsy. The youth version of the EDS comprised six items and had a unidimensional factor structure that explained 55% of the variance. The parent version of the EDS also consisted of six items, with a single factor explaining 47% of the variance. The suitability, validity, and reliability of the youth and parent versions of EDSs were supported by positive indicators, such as a high Cronbach's alpha (representative of good internal consistency) and the confirmation of a number of hypothesized relationships between epilepsy disclosure and psychosocial and illness attitude variables (demonstrative of their convergent validity).
Prior to the development of these instruments, no valid and reliable measures existed that could suitably capture disclosure amongst populations living with epilepsy. The youth and parent versions of the EDS are valid, reliable, brief, and easily administered and thus could prove useful in research as well as in the clinical setting. These scales will enable researchers and clinicians to profile the epilepsy disclosure behaviors of YWE and their parents, which play an important role and have implications both for the psychosocial wellbeing of families living with epilepsy and for epilepsy-related stigma.
本文旨在描述针对癫痫青少年（YWE）及其父母的新型癫痫披露量表（EDS）的开发过程及心理测量学评估。
为青少年及其父母开发EDS包括多个阶段，包括问卷构建和新EDS的项目开发（包括对新开发的EDS进行试点和审查）以及对这些测量工具进行心理测量学评估，以评估其适用性、因子结构、信度和效度。通过对47名癫痫青少年和72名父母进行横断面调查来确定心理测量学特性。
开发了两个量表来评估癫痫青少年及其父母的癫痫披露行为；即他们向他人讲述和谈论孩子癫痫的程度。青少年版的EDS包含六个项目，具有单维因子结构，解释了55%的方差。父母版的EDS也由六个项目组成，单个因子解释了47%的方差。EDS青少年版和父母版的适用性、效度和信度得到了积极指标的支持，如高克朗巴哈系数（代表良好的内部一致性）以及癫痫披露与心理社会和疾病态度变量之间若干假设关系的证实（证明其收敛效度）。
在开发这些工具之前，不存在能够适当地捕捉癫痫患者群体中披露情况的有效且可靠的测量方法。EDS的青少年版和父母版有效、可靠、简短且易于实施，因此在研究和临床环境中可能会证明是有用的。这些量表将使研究人员和临床医生能够描绘癫痫青少年及其父母的癫痫披露行为，这对癫痫患者家庭的心理社会福祉以及癫痫相关的耻辱感都具有重要作用和影响。
