Brna Paula M, Gordon Kevin E, Woolridge Elaine, Dooley Joseph M, Wood Ellen
IWK Health Centre, Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada.
IWK Health Centre, Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada.
Epilepsy Behav. 2017 Aug;73:236-239. doi: 10.1016/j.yebeh.2017.05.012. Epub 2017 Jun 26.
Children and youth with epilepsy have long been subjected to excessive restrictions on extracurricular activities due to concerns over risk of injury. Over time physicians and medical regulatory associations have liberalized the advice given for people with epilepsy to promote independence, self-esteem and general health benefits of physical activity. Current evidence suggests that few restrictions are needed for children with epilepsy beyond water-related precautions and avoidance of very high-risk activities. However, more stringent restrictions on daily activities may be imposed by caregivers. This study was aimed at exploring current perceptions of parents regarding restrictions on activity for children with epilepsy and the child's perspective on restrictions related to the diagnosis.
A self-administered questionnaire was offered to a sample of parent-child dyads of children/youth with epilepsy attending summer camp for children with epilepsy age 8-18years. A 10-item validated HARCES Parent Scale of Childhood Epilepsy was completed by the parent/guardian and a modified-HARCES completed by the child. The primary objective was to assess the degree of restrictions placed on children with epilepsy from the perspective of child and parent assessed independently. Agreement of perceived restrictions between parent-child dyads was also determined.
21 parent/guardian-child pairs were recruited with mean age of children/youth 12.7years (range 9-16years). Total HARCES scores for parents and guardians ranged from 11-26 (x=16.5; SD 4.9) while total scores for children with epilepsy similarly ranged from 10-25 (x=15.2; SD 4.9). There were no differences in total parent scores when analyzed by child's age (<13 or >13years), gender, age of seizure onset, seizure frequency or seizure type. Total HARCES scores showed no agreement between parent and child pairs with correlation of 0.2798 (95% CI -0.173-0.635).
Children and youth with epilepsy often face activity restrictions based on fear of perceived risk of injury. This small sample shows evidence that even more permissive parents and his/her children still feel limited by such restrictions. Parents and children do not perceive these restrictions in the same way despite similar education by physicians highlighting an important secondary role of epilepsy camps in targeting misperceptions and educating families on appropriate precautions.
长期以来，患有癫痫的儿童和青少年因担心受伤风险而在课外活动方面受到过度限制。随着时间的推移，医生和医学监管协会放宽了对癫痫患者的建议，以促进其独立性、自尊心以及体育活动对整体健康的益处。目前的证据表明，除了与水相关的预防措施和避免非常高风险的活动外，癫痫患儿几乎不需要其他限制。然而，照顾者可能会对日常活动施加更严格的限制。本研究旨在探讨家长目前对癫痫患儿活动限制的看法以及患儿对与诊断相关限制的看法。
向参加8至18岁癫痫患儿夏令营的癫痫患儿/青少年的亲子样本发放了一份自填式问卷。家长/监护人完成了一份经过验证的包含10个条目的儿童癫痫HARCES家长量表，患儿完成了一份修改后的HARCES量表。主要目的是从儿童和家长各自独立评估的角度，评估对癫痫患儿的限制程度。还确定了亲子对之间感知到的限制的一致性。
招募了21对家长/监护人 - 儿童对，儿童/青少年的平均年龄为12.7岁（范围9至16岁）。家长和监护人的HARCES总分在11至26分之间（x = 16.5；标准差4.9），而癫痫患儿的总分同样在10至25分之间（x = 15.2；标准差4.9）。按患儿年龄（<13岁或>13岁）、性别、癫痫发作起始年龄、癫痫发作频率或癫痫发作类型分析时，家长总分无差异。HARCES总分显示亲子对之间没有一致性，相关性为0.2798（95%置信区间 -0.173至0.635）。
患有癫痫的儿童和青少年常常因担心感知到的受伤风险而面临活动限制。这个小样本表明，即使是态度更为宽松的家长及其孩子仍然感到受到此类限制的束缚。尽管医生进行了类似的教育，但家长和孩子对这些限制的看法并不相同，这凸显了癫痫夏令营在消除误解以及教育家庭采取适当预防措施方面的重要辅助作用。
