使用基于社区的在线激励性调查来描述功能性癫痫青少年的医疗保健和校内保健情况。
Using a community-based online incentivized survey to describe the healthcare and school-based care of adolescents with functional seizures.
作者信息
Tanner Andrea L, Oruche Ukamaka M, Draucker Claire Burke
机构信息
Indiana University School of Nursing, 2631 E. Discovery Parkway, Bloomington, IN 47408, United States.
University of South Florida Health College of Nursing, 12901 Bruce B. Downs Blvd., MDC 22, Tampa, FL 33612, United States.
出版信息
Epilepsy Behav. 2025 Aug 1;171:110636. doi: 10.1016/j.yebeh.2025.110636.
INTRODUCTION
Functional seizures have profound effects on adolescents and their families. These adolescents report negative experiences with healthcare and school-based providers that are likely exacerbated by racial/ethnic and socioeconomic disparities. Research with this population has been conducted mainly in clinic settings. This study aimed to (1) Determine if a racially/ethnically and socioeconomically diverse group of adolescents with functional seizures can be recruited via a community-based online incentivized survey, (2) Describe adolescents' mental health care utilization and parents' perceptions of encountering disparities in the adolescents' healthcare, (3) Describe adolescents' school-based outcomes, and (4) Describe adolescents' and their parents' perspectives on school-based care.
METHODS
A cross-sectional community-based online incentivized survey with adolescents with functional seizures and their parents.
RESULTS
A racially/ethnically and socioeconomically diverse sample of 22 adolescents with functional seizures and their parents completed the survey, although recruitment was challenged by a high rate of fraudulent and careless responders. Most adolescent responders were chronically absent from school, and most were receiving mental health treatment. Half of the parents reported health disparities due to race/ethnicity, cost, or both. Parents and adolescents provided valuable insights regarding their perspectives on school-based care for adolescents with functional seizures.
CONCLUSION
School nurses and other healthcare providers should develop strategies to address chronic absenteeism due to functional seizures, assess health disparities experienced by adolescents and their families, combat lack of understanding of functional seizures, and provide informed and compassionate care for this population. Survey researchers should develop a systematic plan using multiple strategies to combat fraudulent responses in survey research.
引言
功能性癫痫发作对青少年及其家庭有着深远影响。这些青少年报告称，他们在医疗保健和学校相关服务中有着负面经历，而种族/民族和社会经济差异可能会加剧这些情况。针对这一人群的研究主要在临床环境中进行。本研究旨在：（1）确定是否可以通过基于社区的在线有奖调查招募到种族/民族和社会经济背景多样的功能性癫痫发作青少年群体；（2）描述青少年的心理健康护理利用情况以及家长对青少年医疗保健中存在差异的看法；（3）描述青少年在学校的相关结果；（4）描述青少年及其家长对学校护理的看法。
方法
对患有功能性癫痫发作的青少年及其家长进行一项基于社区的横断面在线有奖调查。
结果
22名患有功能性癫痫发作的青少年及其家长组成的种族/民族和社会经济背景多样的样本完成了调查，不过招募工作受到大量欺诈性和粗心应答者的挑战。大多数青少年应答者长期缺课，且大多数正在接受心理健康治疗。一半的家长报告称存在因种族/民族、费用或两者导致的健康差异。家长和青少年就他们对患有功能性癫痫发作青少年的学校护理看法提供了有价值的见解。
结论
学校护士和其他医疗保健提供者应制定策略，以解决因功能性癫痫发作导致的长期缺课问题，评估青少年及其家庭所经历的健康差异，消除对功能性癫痫发作的误解，并为这一人群提供明智且富有同情心的护理。调查研究人员应制定一个使用多种策略的系统计划，以应对调查研究中的欺诈性回答。
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