Children's understanding of epilepsy: A qualitative study.
Children's understanding of epilepsy: A qualitative study.
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儿童对癫痫的理解：一项定性研究。
DOI：
10.1016/j.yebeh.2021.107994
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发表时间：
2021-07
期刊：
影响因子：
--
通讯作者：
Chin RF
中科院分区：
文献类型：
--
作者：
Harden J;Black R;Pickersgill M;Shetty J;McLellan A;Brand C;Small M;McDonnell J;Clarke L;Chin RF
儿童对癫痫的理解反映了他们的生活经历。父母是关键的信息守门人，塑造孩子的理解力。儿童在有意义地参与医疗决策方面面临挑战。采用质的研究方法，了解儿童对癫痫的认识和癫痫的治疗。7-16岁经医生确认患有活动性癫痫(即在过去一年中有癫痫发作和/或正在服用抗癫痫药物，且未知有智力残疾)的儿童被邀请参加。孩子们在两个场合分别进行了半结构化访谈。在第一次和第二次访谈之间，进行了对个别儿童的常规癫痫诊所预约的观察，然后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性研究工具，以促进讨论。访谈被录音和转录，化名并进入NVivo(版本12，QSR International)。使用专题方法对数据进行分析。入选儿童23例，平均年龄10.1 (8~14岁)，癫痫病程2~10年(平均4.6 年)。12名女性；7名局灶性癫痫患者，14名全身性癫痫患者，2名合并癫痫患者；20名接受单一治疗的患者；16名曾尝试过抗癫痫药物的患者。所有人都进行了第一次面谈；20人在诊所预约期间接受了观察，并进行了第二次面谈。出现了五大主题：对癫痫的理解；对癫痫的理解；对药物的理解；对儿童在临床预约中的作用的理解；对儿童理解的影响。孩子们谈到癫痫是什么意思，通过描述癫痫发作的身体感觉或通过服用药物的行为。儿童描述了他们所扮演的角色，或认为他们应该扮演的角色，但他们报告了在有意义地参与临床预约方面的挑战。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重要。癫痫儿童的观点对于临床医生来说是有价值的；不应假设儿童的观点可以通过父母获得。临床医生需要不断了解儿童对癫痫的看法和理解和沟通的方式。为了支持这一点，这项研究-利用儿童的词汇、含义和故事-被用来提供一个易于访问的、性别中立的关于癫痫的动画，提供有关病情、癫痫发作和药物治疗的信息(https://youtu.be/MO7xXL2ZXP8).
Children’s understanding of epilepsy reflects their lived experiences. Parents are key information gatekeepers and shape children’s understanding. Children face challenges in being meaningfully involved in healthcare decisions. 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).
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DOI：
10.1177/1367493506067884
发表时间：
2006-12-01
期刊：
Journal of child health care : for professionals working with children in the hospital and community
影响因子：
--
作者：
Coyne, Imelda
通讯作者：
Coyne, Imelda
影响因子：
5.4
作者：
Buchbinder, Mara
通讯作者：
Buchbinder, Mara
影响因子：
1.9
作者：
Chew, Judith;Carpenter, John;Haase, Anne M.
通讯作者：
Haase, Anne M.
影响因子：
2.6
作者：
Ronen, Gabriel M.;Streiner, David L.;Rosenbaum, Peter L.
通讯作者：
Rosenbaum, Peter L.
影响因子：
3.1
作者：
Sherifali, Diana;Pinelli, Janet
通讯作者：
Pinelli, Janet