慢性病治疗的挑战：青少年肌阵挛性癫痫患者叙述的研究。
Challenges in the treatment of a chronic disease: A study of narratives of people with juvenile myoclonic epilepsy.
机构信息
Neurociência, Departamento de Neurologia e Neurocirurgia, Escola Paulista de Medicina, Universidade Federal de São Paulo, São Paulo, Brazil.
Neurologia, Departamento de Neurologia e Neurocirurgia, Escola Paulista de Medicina, Universidade Federal de São Paulo, São Paulo, Brazil.
出版信息
Seizure. 2021 Aug;90:74-79. doi: 10.1016/j.seizure.2021.04.004. Epub 2021 Apr 6.
PURPOSE
The purpose of this study was to explore how people with juvenile myoclonic epilepsy perceive the impact of treatment.
METHODS
We conducted 14 interviews of participants with juvenile myoclonic epilepsy recruited with the support of the Brazilian Association of Epilepsy in 2018 in São Paulo. Thematic analysis was carried out by two investigators who independently coded the transcripts and reviewed the coding results to check for agreement.
RESULTS
Participants' (n = 14, 8 female) mean age was 31.4 years (SD ± 8.3) and their onset of seizures occurred at mean age 13.4 (SD ± 2.9). The answers to the interview questions revealed the paths of participants through life as they dealt with difficulties and challenges. Three interrelated themes and seven sub-themes emerged from the answers of the participants: seizure control, impact of epilepsy and attitude of others.
CONCLUSION
This investigation may be useful in providing insights for the interventions of health providers in caring for people with JME. Themes and sub-themes that emerged from this study are connected to important aspects of treatment that go beyond focusing solely on seizures.
目的
本研究旨在探讨青少年肌阵挛癫痫患者如何感知治疗的影响。
方法
我们于 2018 年在巴西癫痫协会的支持下，对 14 名青少年肌阵挛癫痫患者进行了访谈。两位研究人员对转录本进行了独立编码，并对编码结果进行了审查，以检查一致性，从而进行主题分析。
结果
参与者（n=14，女性 8 人）的平均年龄为 31.4 岁（标准差±8.3），癫痫发作的平均起始年龄为 13.4 岁（标准差±2.9）。通过回答访谈问题，揭示了参与者在生活中面对困难和挑战时的人生轨迹。参与者的回答中出现了三个相互关联的主题和七个子主题：癫痫发作的控制、癫痫的影响和他人的态度。
结论
这项研究可能有助于为健康提供者在照顾 JME 患者方面的干预措施提供见解。本研究中出现的主题和子主题与治疗的重要方面有关，而不仅仅是关注癫痫发作。
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