School of Nursing, University of Alabama at Birmingham, Birmingham, AL, USA.
Division of Geriatrics, Gerontology, and Palliative Care, School of Medicine, The University of Alabama, Birmingham, AL, USA.
J Palliat Care. 2023 Jul;38(3):316-325. doi: 10.1177/08258597231165898. Epub 2023 Mar 27.
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. Semi-structured interviews were held with 15 FCGs of persons with PBTs, both those who have 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. 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. 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.
原发性脑肿瘤(PBT)患者的家属照顾者(FCG)报告称,他们对院外癫痫发作的担忧与高度困扰有关。本研究旨在探讨他们在癫痫管理方面的经验和需求。对 15 名 PBT 患者的 FCG 进行了半结构式访谈,包括有过和没有过癫痫发作的患者,以了解他们对院外癫痫管理和相关信息需求的担忧。根据访谈数据,采用主题分析进行了定性描述性研究。确定了与照顾 PBT 患者,特别是癫痫管理相关的 FCG 经验和需求的三个主要主题:(1)FCG 照顾 PBT 患者的经验;(2)FCG 对癫痫准备和资源的教育需求;(3)FCG 对教育资源和癫痫信息的理想类型的需求。通常,FCG 报告说对癫痫发作感到恐惧,几乎所有人都表示难以知道何时呼叫急救服务。FCG 同样希望获得书面和在线资源,大多数人更喜欢详细说明癫痫发作的图形或视频。大多数 FCG 认为,癫痫相关培训应该在 PBT 诊断之后而不是在诊断时进行。没有经历过癫痫发作的患者的 FCG 在管理癫痫方面的准备明显不如有过癫痫发作的患者。识别和管理院外癫痫发作对 PBT 患者的 FCG 来说可能是一项困难和令人痛苦的任务,因此需要癫痫相关资源。我们的研究结果表明,PBT 患者的照顾者的 FCG 需要早期的支持性干预措施,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,以帮助他们了解维持护理对象安全环境的最佳机制,以及了解何时联系 EMS 的知识。
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