"It's Not Just the Seizures": Brain Tumor Caregivers' Experiences and Educational Needs in Out-of-Hospital Seizure Management.

IF 1.3 4区 医学 Q4 HEALTH CARE SCIENCES & SERVICES
Deborah Ejem, Macy Stockdill, Rebecca Edwards, J Nicholas Dionne-Odom, Richard Taylor, Walter Baehr, L Burt Nabors, Marie Bakitas, Paula Warren
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引用次数: 0

Abstract

Objective: Family caregivers (FCGs) of persons with primary brain tumors (PBTs) report high levels of distress related to concerns about out-of-hospital seizures. This study aims to explore their experiences and needs with seizure management. Methods: Semi-structured interviews were held with 15 FCGs of persons with PBTs, both those who have and those who have not experienced a seizure, to elicit their concerns about out-of-hospital seizure management and related information needs. A qualitative descriptive study using thematic analysis was conducted based on interview data. Results: Three primary themes were identified relative to FCG experiences and needs related to care of PBTs patients, especially seizure management: (1) FCGs' experiences with caring for persons with PBTs; (2) FCGs' educational needs for seizure preparation and resources; and (3) FCGs' desired type of educational resources and information about seizures. Often FCGs were reported being fearful of seizures and nearly all expressed difficulty knowing when to call emergency services. FCGs equally desired written and online resources, and most preferred graphics or videos detailing seizures. Most FCGs thought that seizure-related training should come after rather than at the time of PBTs diagnosis. FCGs of patients who have not experienced seizures were significantly less prepared to manage seizures than those with a prior seizure. Conclusions: Recognizing and managing out-of-hospital seizures can be a difficult and distressing task for FCGs of patients with PBTs and seizure-related resources are needed. Our results suggest that FCGs of care recipients with PBTs need early supportive interventions to provide self-care strategies and problem-solving skills to manage their roles as caregivers. Interventions should include educational components to assist them in understanding the best mechanisms to maintain a safe environment for their care recipients, and those that deepen knowledge about when to contact EMS.

“不仅仅是癫痫发作”:脑肿瘤护理人员在院外癫痫发作管理中的经验和教育需求。
目的:原发性脑肿瘤(pbt)患者的家庭照顾者(FCGs)报告了与院外癫痫发作相关的高度痛苦。本研究旨在探讨他们在癫痫发作管理方面的经验和需求。方法:采用半结构化访谈的方式,对15名有癫痫发作和没有癫痫发作的pbt患者的FCGs进行访谈,了解他们对院外癫痫发作管理的担忧和相关信息需求。基于访谈数据,采用专题分析方法进行定性描述性研究。结果:本研究确定了三个主要主题,涉及到与PBTs患者护理相关的FCG经验和需求,特别是癫痫发作管理:(1)FCG对PBTs患者的护理经验;(2) FCGs对查封准备和资源的教育需求;(3)患儿希望的癫痫教育资源和信息类型。据报告,这些儿童经常害怕癫痫发作,几乎所有人都表示不知道何时呼叫紧急服务。fcg同样需要书面和在线资源,大多数人更喜欢详细描述缉获事件的图像或视频。大多数FCGs认为癫痫相关的培训应该在pbt诊断之后进行,而不是在诊断时进行。未经历过癫痫发作的患者的FCGs对癫痫发作的处理准备明显低于有癫痫发作史的患者。结论:识别和管理院外癫痫发作对PBTs患者的FCGs来说可能是一项困难和痛苦的任务,需要与癫痫发作相关的资源。我们的研究结果表明,有PBTs的护理接受者的FCGs需要早期的支持性干预,以提供自我护理策略和解决问题的技能,以管理他们作为照顾者的角色。干预措施应包括教育内容,以帮助他们了解为其护理对象维持安全环境的最佳机制,并加深对何时联系紧急医疗服务的认识。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
Journal of Palliative Care
Journal of Palliative Care 医学-卫生保健
CiteScore
3.20
自引率
5.90%
发文量
63
审稿时长
>12 weeks
期刊介绍: The Journal of Palliative Care is a quarterly, peer-reviewed, international and interdisciplinary forum for practical, critical thought on palliative care and palliative medicine. JPC publishes high-quality original research, opinion papers/commentaries, narrative and humanities works, case reports/case series, and reports on international activities and comparative palliative care.
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