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癫痫青年成人同伴支持的经验与观点

Experiences and perspectives of peer support among young adults with epilepsy.

作者信息

Batchelor Rachel, Taylor Michelle D

机构信息

Department of Psychology, Royal Holloway, University of London, Surrey, UK.

Health Psychology Research Limited (HPR Ltd.), 188 High Street, Egham, Surrey, UK.

出版信息

Epilepsy Behav Rep. 2023 Feb 1;21:100590. doi: 10.1016/j.ebr.2023.100590. eCollection 2023.

Abstract

Young adulthood is a critical developmental period which having epilepsy tends to complicate, suggesting support could be useful. This study aimed to examine the experiences and perspectives of peer support among young adults with epilepsy (YAWE). An online survey was completed by 144 YAWE. Most YAWE reported not having access to peer support but perceived several potential benefits which could support their mental health including mutual understanding, fostering friendships and reducing loneliness, and promoting self-management and coping strategies. Reported barriers to accessing peer support included practical barriers such as travel and time constraints, emotional barriers (e.g., anxiety), and peers not feeling confident or skilled enough to support others. The need for epilepsy peer support groups specifically designed for young adults, university students, and individuals with co-occurring conditions such as autism and attention deficit hyperactivity disorder were also recognised as well as online delivery to address some of the identified barriers. Appropriate training for facilitators and group moderation were noted as important. Overall, these preliminary findings support the acceptability of peer support among YAWE, indicating peer support could be a worthy focus of policy and care pathway development. However, future research is needed to evaluate the effectiveness of peer support for epilepsy populations.

摘要

青年期是一个关键的发育阶段,患有癫痫往往会使情况变得复杂,这表明提供支持可能会有所帮助。本研究旨在调查癫痫青年成年人(YAWE)对同伴支持的体验和看法。144名YAWE完成了一项在线调查。大多数YAWE报告称无法获得同伴支持,但他们认识到同伴支持对其心理健康有诸多潜在益处,包括相互理解、增进友谊、减少孤独感,以及促进自我管理和应对策略。报告的获得同伴支持的障碍包括实际障碍,如出行和时间限制、情感障碍(如焦虑),以及同伴觉得自己没有足够的信心或技能去支持他人。人们还认识到需要专门为青年成年人、大学生以及患有自闭症和注意力缺陷多动障碍等共病的个体设立癫痫同伴支持小组,以及通过线上方式来克服一些已确定的障碍。为小组活动主持人提供适当培训和进行小组管理被认为很重要。总体而言,这些初步研究结果支持了同伴支持在YAWE中的可接受性,表明同伴支持可能是政策制定和护理路径发展的一个有价值的关注点。然而,未来需要开展研究来评估同伴支持对癫痫患者群体的有效性。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/9f35/9929678/da8deff804de/gr1.jpg

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