Usher Institute, The University of Edinburgh, UK; Muir Maxwell Epilepsy Centre, Centre for Clinical Brain Sciences, The University of Edinburgh, UK.
Usher Institute, The University of Edinburgh, UK; Muir Maxwell Epilepsy Centre, Centre for Clinical Brain Sciences, The University of Edinburgh, UK.
Epilepsy Behav. 2021 Jul;120:107994. doi: 10.1016/j.yebeh.2021.107994. Epub 2021 May 5.
To use a qualitative research approach to determine children's understandings of epilepsy and their epilepsy treatment.
Children aged 7-16 years with physician-confirmed active epilepsy (i.e., having had an epileptic seizure in the past year and or currently taking antiepileptic drugs (AEDs), and not known to have an intellectual disability, were invited to participate. Children had semi-structured interviews separately on two occasions. Between the first and second interviews, an observation of a routine epilepsy clinic appointment of individual children was conducted, and was then discussed during the second interview. Participatory research tools were used in both child interviews to facilitate discussions. Interviews were audio recorded and transcribed, pseudonymized and entered into NVivo (version 12, QSR International). Data were analyzed using a thematic approach.
Twenty-three children of mean age 10.1 years (range 8-14), mean duration of epilepsy of 4.6 years (range 2-10) were enrolled. Twelve were 12 female; 7 had focal, 14 had generalized, and 2 had combined epilepsy; 20 were on monotherapy; and 16 had tried previous AEDs. All had an initial (first) interview; 20 were observed during a clinic appointment and had a second interview. Five broad themes emerged: understanding of epilepsy; understanding of seizures; understanding of medication; understanding of children's role in clinical appointments; influences on children's understanding. Children spoke about what epilepsy meant by describing the physical sensations of having a seizure or through the act of taking medication. Children described the role they had, or felt they should have, but reported challenges in being meaningfully involved in clinical appointments. While healthcare professionals were initial information nodes, epilepsy information from parents appeared to be more significant for children.
The perspectives of children with epilepsy are valuable for clinicians to understand; assumptions should not be made that children's views can be accessed via parents. Clinicians need to be constantly aware of children's views and ways of understanding and communicating about their epilepsy. To support this, the research - drawing on children's words, meanings, and stories - was used to inform an easily accessible, gender-neutral, animation about epilepsy that provides information about the condition, seizures, and medication (https://youtu.be/MO7xXL2ZXP8).
使用定性研究方法来确定儿童对癫痫的理解以及他们对癫痫治疗的看法。
邀请年龄在 7-16 岁之间、经医生确诊患有活动性癫痫（即过去一年有癫痫发作或目前正在服用抗癫痫药物（AEDs）、且未被诊断为智力残疾的儿童参加。儿童在两次单独的半结构化访谈中接受了访谈。在第一次和第二次访谈之间，对个别儿童的常规癫痫诊所预约进行了观察，并在第二次访谈中进行了讨论。在两次儿童访谈中都使用了参与式研究工具来促进讨论。访谈进行了录音，并进行了假名处理和输入 NVivo（版本 12，QSR International）。使用主题方法进行数据分析。
共有 23 名平均年龄为 10.1 岁（8-14 岁）、平均癫痫发作时间为 4.6 年（2-10 年）的儿童入组。其中 12 人为女性；7 人患有局灶性癫痫，14 人患有全面性癫痫，2 人患有混合性癫痫；20 人接受单一药物治疗，16 人曾尝试过其他 AEDs。所有儿童均接受了初始（首次）访谈；20 人在诊所预约期间接受了观察，并进行了第二次访谈。出现了五个广泛的主题：对癫痫的理解；对癫痫发作的理解；对药物的理解；对儿童在临床预约中的角色的理解；对儿童理解的影响。儿童通过描述癫痫发作时的身体感觉或通过服药来描述癫痫的含义。儿童描述了他们应该扮演的角色，但报告说在有意义地参与临床预约方面存在挑战。虽然医疗保健专业人员是最初的信息节点，但来自父母的癫痫信息似乎对儿童更为重要。
了解癫痫儿童的观点对临床医生很有价值；不应假设可以通过父母了解儿童的观点。临床医生需要时刻意识到儿童的观点以及他们理解和交流癫痫的方式。为了支持这一点，研究——借鉴儿童的话语、意义和故事——被用来制作一个易于访问的、性别中立的关于癫痫的动画，提供关于该疾病、癫痫发作和药物的信息（https://youtu.be/MO7xXL2ZXP8）。
