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首页> 外文期刊>Epilepsia: Journal of the International League against Epilepsy >Disclosure strategies in adults with epilepsy when telling, “I have epilepsy”: The How2tell study
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Disclosure strategies in adults with epilepsy when telling, “I have epilepsy”: The How2tell study

机译：在讲话时，癫痫的成年人披露策略，“我有癫痫”：How2tell学习

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Abstract Objective To generate evidence‐based knowledge about the strategies that adult people with epilepsy (PWEs) use in the process of telling others about their epilepsy. Methods In‐depth, one‐to‐one interviews explored PWEs’ first‐hand experiences of self‐disclosure (or not), and grounded theory methods of inductive‐deductive analysis were used to identify strategies used in disclosing. Interviews were audio‐recorded, transcribed, coded, and independently recoded by two researchers using a coding framework specifically developed in this study. To account for maximum variation, PWEs (aged 18+ years) with different life experiences and situations relating to (1) gender, (2) age, (3) employment status, (4) personal relationships, (5) family relationship, (6) support group involvement, and (7) seizure frequency were included. Given the many variables and psychosocial issues associated with epilepsy, demographic details and validated measures including Quality of Life in Epilepsy‐10‐P, Coping Inventory of Stressful Situations‐Adult, and Patient Health Questionnaire‐9 were used to describe the characteristics of participants and to contextualize the results. Results Forty‐nine adults with epilepsy participated. Data analysis revealed six interrelated categories (with subcategories) of the strategies that PWEs reported using in the process of disclosure: (1) concerns about disclosing; (2) weighing up who and when to tell; (3) opportunities for telling; (4) moment of disclosure—how to construct the message; (5) tailoring the message to audience needs—altering the message when telling family members, partner, friends, children, or employer and workplace colleagues; and (6) managing reactions by making it ordinary. Significance People with epilepsy use a range of different strategies during the process of disclosing their epilepsy. These strategies were used to inform the development of the How2tell multimedia self‐management resource for PWEs on self‐disclosure in everyday social and life situations. How2tell is designed to benefit PWEs by empowering them with practical information about the process of telling another person, “I have epilepsy.”
机译：摘要目的是生成关于成年人癫痫（PWES）在讲述别人的癫痫过程中使用的策略的证据知识。方法深入，一对一的面试探索了PWES的自披露第一手经验（与否），接地的归纳 - 演绎分析理论方法用于识别披露中使用的策略。使用本研究专门开发的编码框架，由两名研究人员独立记录，转录，编码，并独立重新编码访谈。要考虑到最大变化，PWES（18岁以上年龄）不同的生活经验和与（1）性别，（2）年龄，（3）就业状况，（4）个人关系，（5）家庭关系（ 6）支持组参与，并包括（7）癫痫发作频率。鉴于与癫痫有关的许多变量和心理社会问题，包括癫痫患者的生命质量和验证措施，包括压力情况 - 成年人的患者和患者健康问卷-9的生命质量，用于描述参与者的特征和背景化结果。结果癫痫有49名成年人参加。数据分析显示使用在披露过程中所报告的策略的六种相互关联的类别（具有子类别）：（1）对披露的担忧; （2）称谁和何时讲述; （3）讲的机会; （4）披露时刻 - 如何构建消息; （5）根据观众定制信息，需要改变留言，在告诉家人，合作伙伴，朋友，儿童或雇主和工作场所同事时; （6）通过使其普通管理反应。癫痫患者在揭示癫痫过程中使用一系列不同策略的意义。这些策略被用来为日常社会和生活情况中的自披露WHE2tell多媒体自我管理资源的发展。 How2tell旨在通过赋予他们有关讲述另一个人的进程的实际信息来使PWE受益，“我有癫痫症”。

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