Ethical, Social, and Economic Challenges in Managing a Child with Dravet Syndrome in a Developing Country

IF 0.2 Q4 PEDIATRICS Journal of Pediatric Epilepsy Pub Date : 2020-07-15 DOI:10.1055/s-0040-1714065
S. Gulati, R. Sinha, Priyanka Madaan
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引用次数: 2

Abstract

Abstract Epilepsy is a chronic neurological disorder with a significant impact on sociocultural and economic aspects. The management of epilepsy in low-middle income countries (LMICs) is influenced by many factors such as disease burden, poverty, educational status, the reflection of the disease as a social stigma, diverse religious beliefs, and treatment expense. Despite the improvement in educational and social parameters, the stigmatization of the disease is still evident in many LMICs. The associated comorbidities and neurodevelopmental disorders further add to the cost and stigmatization. The pediatric neurologists/epileptologists in LMICs are encountered by distinctive ethical, social, and economic dilemmas during the patient care and management of epilepsy. This article discusses the various ethical dilemmas in a child with Dravet syndrome in a developing country.
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在一个发展中国家,管理患特拉韦特综合症儿童的伦理、社会和经济挑战
癫痫是一种慢性神经系统疾病,对社会文化和经济产生重大影响。中低收入国家的癫痫管理受到许多因素的影响,如疾病负担、贫困、教育状况、该病作为一种社会耻辱的反映、不同的宗教信仰和治疗费用。尽管教育和社会条件有所改善,但在许多中低收入国家,对这种疾病的污名化仍然很明显。相关的合并症和神经发育障碍进一步增加了成本和污名化。中低收入国家的儿科神经科医生/癫痫学家在对癫痫患者的护理和管理过程中遇到了独特的伦理、社会和经济困境。这篇文章讨论了发展中国家患德拉韦特综合症儿童的各种伦理困境。
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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.
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