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Removing Oneself from the Shadows: A Heuristic Inquiry to Understand the Lived Experience of Epilepsy in Young Adult Women and their Epilepsy Disclosure

机译：脱离阴影：了解青少年女性癫痫患者生活经历及其癫痫披露的启发式调查

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Epilepsy is a chronic neurological disorder characterized by recurrent seizures (Stein & Kanner, 2009). The purpose of this study was to understand the essence of being a young woman living with epilepsy using heuristic inquiry (Moustakas, 1990). The research was built upon the assumption that each experience is unique, yet commonalities exist. Five women aged 22 to 28 years living with epilepsy were interviewed. Additionally, the researcher described her life with epilepsy. Participants characterized life with epilepsy as a transformative journey. The act of meeting and interacting with another woman living with epilepsy provided an opportunity to remove themselves from the shadows and discuss epilepsy. Three major themes of seizures, medical treatment, and social relationships were developed revealing a complex view of an illness requiring engaged advocacy in the medical system. Respondents frequently make difficult adjustments to accommodate epilepsy. This study provides a complex in-depth view of life with epilepsy.

机译：癫痫病是一种慢性神经系统疾病，其特征是反复发作（Stein＆Kanner，2009）。这项研究的目的是通过启发式探究来了解作为一名患有癫痫病的年轻女性的本质（Moustakas，1990）。这项研究是基于这样一种假设，即每种经验都是独特的，但存在共性。采访了五名22至28岁患有癫痫病的妇女。此外，研究人员还用癫痫病描述了她的生活。参加者将癫痫病的生活描述为一种变革性的旅程。与另一个患有癫痫病的妇女会面和互动的行为提供了一个使自己摆脱阴影并讨论癫痫病的机会。癫痫发作，医疗和社会关系这三个主要主题得以发展，揭示了一种疾病的复杂观点，需要在医疗系统中进行积极倡导。受访者经常会做出困难的调整以适应癫痫病。这项研究为癫痫患者的生活提供了复杂而深入的见解。

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McGuire Suzanne;
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年度 2015
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原文格式 PDF
正文语种 eng
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入库时间 2022-08-31 16:22:20

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1. A qualitative study of the reactions of young adults with epilepsy to SUDEP disclosure, perceptions of risks, views on the timing of disclosure, and behavioural change [J] . Tonberg A., Harden J., McLellan A., Epilepsy & behavior: E&B . 2015,第Null期

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2. Disclosure strategies in adults with epilepsy when telling, “I have epilepsy”: The How2tell study [J] . Elliott Naomi, Pembroke Sinead, Quirke Mary, Epilepsia: Journal of the International League against Epilepsy . 2019,第10期

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5. Nearly one in five adults with active epilepsy lives alone based on findings from the 2010 and 2013 US National Health Interview Surveys. US Centers for Disease Control and Prevention Epilepsy Program [O] . -1

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6. Breaking the cycle of invisibility: a mixed methods inquiry into the disclosure behaviours and experiences of children living with epilepsy and their parents [O] . Benson Ailbhe 2016

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Removing Oneself from the Shadows: A Heuristic Inquiry to Understand the Lived Experience of Epilepsy in Young Adult Women and their Epilepsy Disclosure

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