长期护理机构儿童癫痫患者的生活质量困境

IF 0.2 Q4 PEDIATRICS Journal of Pediatric Epilepsy Pub Date : 2020-07-22 DOI:10.1055/s-0040-1714356
L. Tran
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引用次数: 0

摘要

患有慢性护理或复杂医疗需求(如癫痫)的儿童依靠倡导者来确保他们的安全和福祉,这一角色通常由父母或大家庭承担。密切参与提供重要的历史和细节是帮助指导适当的管理决策,以确保最佳的神经发育结果的精髓。然而,当这些弱势儿童被安置在寄养系统中时,他们对倡导者的需求变得更加重要。不幸的是,这可能是缺乏的,并可能导致他们的医疗崩溃。他们复杂的医疗状况往往会对大多数潜在的寄养家庭造成威胁,并可能导致他们被安置在长期护理机构。这反过来又带来了额外的障碍,如缺乏一致的、专门的护理人员,可能会阻碍最佳护理。这种空白不仅会影响他们的治疗结果和医疗护理,还会导致过度使用有限的医疗资源,以及如果有可靠的病史来源就可以预防的不必要的不良反应。因此,需要专门的资源来帮助为这些弱势儿童提供专门的倡导者。
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Quality of Life Dilemmas in Pediatric Patients with Epilepsy Residing in Long-Term Care Facilities
Abstract Children with chronic care or complex medical needs, such as epilepsy, depend on advocates to ensure their safety and well-being, a role typically filled by parents or extended family. Close participation to provide vital history and details is quintessential to help guide appropriate management decisions to ensure optimal neurodevelopmental outcome. However, when these vulnerable children are placed in the foster care system, their need for an advocate becomes even more paramount. Unfortunately, this can be lacking and can lead to a breakdown in their medical care. Their complex medical conditions often can be intimidating to most potential foster families and may result in placement in long-term care facilities. This, in turn, presents additional obstacles that can hinder optimal care such as lack of consistent, dedicated caretakers. This void not only impacts their outcome and medical care but also leads to excessive use of limited healthcare resources as well as unwanted adverse reactions that can be prevented if a reliable source of history is available. As a result, there is a need for dedicated resources to help provide devoted advocates for these vulnerable children.
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来源期刊
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期刊介绍: The Journal of Pediatric Epilepsy is an English multidisciplinary peer-reviewed international journal publishing articles on all topics related to epilepsy and seizure disorders, epilepsy surgery, neurology, neurosurgery, and neuropsychology in childhood. These topics include the basic sciences related to the condition itself, the differential diagnosis, natural history, and epidemiology of seizures, and the investigation and practical management of epilepsy (including drug treatment, neurosurgery and non-medical and behavioral treatments). Use of model organisms and in vitro techniques relevant to epilepsy are also acceptable. Journal of Pediatric Epilepsy provides an in-depth update on new subjects and current comprehensive coverage of the latest techniques used in the diagnosis and treatment of childhood epilepsy.
期刊最新文献
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