• 主题
高级搜索  >
历史搜索 清空历史
首页> 外文OA文献 >Breaking the cycle of invisibility: a mixed methods inquiry into the disclosure behaviours and experiences of children living with epilepsy and their parents
【2h】

Breaking the cycle of invisibility: a mixed methods inquiry into the disclosure behaviours and experiences of children living with epilepsy and their parents

机译：打破隐形循环：对癫痫患儿及其父母的披露行为和经历的混合方法探讨

页面导航
  • 摘要
  • 著录项
  • 相似文献
  • 相关主题

摘要

Disclosing a child’s epilepsy to others external to the nuclear family presents a salient challenge for children with epilepsy (CWE) and their parents. However, a systematic review revealed that empirical evidence regarding how such populations experience epilepsy disclosure is limited. The core contribution this study makes is the explication of CWE’s and parents’ epilepsy disclosure behaviours and experiences, and the elucidation of the relationships between CWE’s and parents’ epilepsy disclosure behaviours and demographic/clinical characteristics,udpsychosocial wellbeing and illness attitudes. This mixed methods study involved two phases: 1) semi-structured interviews with CWE (n=29) and their parents (n=34); and 2) a cross-sectional survey of 72 parents and 47 CWE. Findings revealed that CWE and their parents adopt varying disclosure management strategies, ranging from voluntary disclosure to concealment. CWE and their parents identified many barriers to and enablers of disclosure, including: the desire for normalcy; others’ reactions; the condition’s invisibility; media coverage of epilepsy; emotionaludresponses to the diagnosis; the complexity of epilepsy; self, other and public perceptions of, and attitudes towards epilepsy; and seizure characteristics. Greater concealment amongst CWE and parents was significantly correlated with: 1) CWE reporting greater stigma, and poorer illness attitudes and health-related quality of life; and 2) parents responding negatively to the child’s illness, perceiving greater stigma and reporting fewer epilepsy-related interactions with CWE.udThis study provides a nuanced understanding of the disclosure process engaged in by CWE and parents, enhancing our knowledge of their disclosure strategies and targets, the content and situational context of their disclosure exchanges, barriers to and enablers of disclosure, and the consequences of disclosure in doing so. Overall, the findings suggest that greater concealment is associated with more negative outcomes for CWE and parents. Interventions to assist CWE and parents to navigate epilepsy disclosure could beneficially impact on their psychosocial wellbeing.
机译：向核心家庭以外的其他人透露孩子的癫痫病对癫痫病儿童（CWE）和他们的父母提出了严峻的挑战。但是，系统的审查显示，有关此类人群如何经历癫痫披露的经验证据有限。这项研究的核心贡献是阐明了CWE和父母的癫痫披露行为和经验，并阐明了CWE和父母的癫痫披露行为与人口统计学/临床特征，心理社会健康状况和疾病态度之间的关系。这项混合方法研究涉及两个阶段：1）对CWE（n = 29）及其父母（n = 34）进行半结构化访谈； 2）对72位家长和47位CWE进行的横断面调查。调查结果表明，CWE及其父母采取了不同的披露管理策略，从自愿披露到隐瞒。 CWE和他们的父母发现了许多阻碍信息公开的障碍和促成因素，包括：对正常的渴望；他人的反应；该病隐身；癫痫病的媒体报道；情绪上对诊断的反应;癫痫的复杂性；自我，其他和公众对癫痫的看法以及对癫痫的态度；和癫痫发作的特征。 CWE和父母之间更大的隐瞒与以下方面显着相关：1）CWE报告的耻辱感更大，疾病态度和健康相关的生活质量更差； 2）父母对孩子的疾病产生负面反应，认为耻辱感更大，并且报告与CWE发生的癫痫相关互动较少。 ud这项研究使CWE和父母进行的披露过程有了细微的了解，增强了我们对他们的披露策略和知识的了解。目标，信息披露交流的内容和情况背景，信息披露的障碍和促成因素以及这样做的后果。总体而言，研究结果表明，更大的隐瞒与CWE和父母的更多负面结果相关。协助CWE和父母解决癫痫披露的干预措施可能会对他们的心理健康产生有益影响。

著录项

  • 作者

    Benson Ailbhe;

  • 作者单位
  • 年度 2016
  • 总页数
  • 原文格式 PDF
  • 正文语种 en
  • 中图分类

相似文献

  • 外文文献
  • 中文文献
  • 专利

客服邮箱：kefu@zhangqiaokeyan.com

京公网安备：11010802029741号 ICP备案号：京ICP备15016152号-6 六维联合信息科技 (北京) 有限公司©版权所有

  • 客服微信

  • 服务号