Sinha Rahul, Soneji Dharmesh, Tewari V V, Singh Sonali, Kalikinkar Ojha Priyabrata, Patra Abhilash, Kamila Gautam, Dhingra Sandeep, Dhillon Gurpreet, Bansal Vandana, V Pavithra
Department of Pediatrics, Command Hospital, Chandimandir, Panchkula, India.
Department of Medicine, Command Hospital, Chandimandir, Panchkula, India.
Heliyon. 2023 Sep 9;9(9):e19849. doi: 10.1016/j.heliyon.2023.e19849. eCollection 2023 Sep.
The study aimed to assess the knowledge, attitude, and practice (KAP) of parents/caregivers toward epilepsy in paediatric patients at a tertiary care centre of North India.
A cross sectional study was carried out among 418 parents or caregivers using convenience sampling technique with 16-item questionnaire in English language and also translated to local language that is Hindi. Children with epilepsy who visited the paediatric outpatient department within a year were included in the study (January 2021-22). A total of 450 children visited the clinic, 32 of whom were excluded for various reasons, and the final analysis was conducted among the 418 parents or caregivers who completed the questionnaire.
The male and female patients were 56.7% (n = 237) and 43.3% (n = 181) respectively. The age distribution of patients with less than 5 years, 6-10 years and more than 10 years were 35.6% (n = 149), 54.5% (n = 228), 9.8% (n = 41) respectively. Only one third of parents and caregivers did not consider epilepsy as psychiatric illness. Most of the parents and caregivers think that epilepsy affects school performance (77.2%) and hinders family life (71.0%). More than half of the parents or caregivers believes that the society discriminates against person with epilepsy and around 46.6% consider that alternative medicine can cure epilepsy. The parents or caregivers felt financial burden due to epilepsy was in 72.5% and approximately 78.5% perceived that their work is affected because of their child's epilepsy. Perception of epilepsy as a psychiatric illness was found to be significantly higher in parents with primary and secondary level education, when compared to parents who were graduates. The practice of the parents or caregivers towards administration of drugs to their child was good, however around 36.6% (n = 153) missed the dose of anti-seizure medications.
The study highlights the substantial knowledge, attitude and practice gap amongst parents and caregivers for children with epilepsy which indirectly has huge impact on the management of epilepsy. Thus it becomes utmost important to educate the family as well as the community regarding epilepsy which will help in improving the therapeutic outcomes, overall quality of life and interpersonal and social relationships of these children.
本研究旨在评估印度北部一家三级医疗中心的家长/照顾者对小儿癫痫患者的知识、态度和行为(KAP)。
采用便利抽样技术,对418名家长或照顾者进行横断面研究,使用一份16项的英文问卷,并翻译成当地语言印地语。一年内到儿科门诊就诊的癫痫患儿被纳入研究(2021年1月至2022年)。共有450名儿童到诊所就诊,其中32名因各种原因被排除,最终对418名完成问卷的家长或照顾者进行分析。
男性和女性患者分别占56.7%(n = 237)和43.3%(n = 181)。年龄小于5岁、6至10岁和大于10岁的患者分布分别为35.6%(n = 149)、54.5%(n = 228)、9.8%(n = 41)。只有三分之一的家长和照顾者不认为癫痫是精神疾病。大多数家长和照顾者认为癫痫会影响学业表现(77.2%)并阻碍家庭生活(71.0%)。超过一半的家长或照顾者认为社会歧视癫痫患者,约46.6%的人认为替代医学可以治愈癫痫。72.5%的家长或照顾者感到因癫痫造成经济负担,约78.5%的人认为他们的工作因孩子的癫痫而受到影响。与受过高等教育的家长相比,小学和中学教育水平的家长将癫痫视为精神疾病的认知明显更高。家长或照顾者给孩子用药的行为良好,但约36.6%(n = 153)的人漏服了抗癫痫药物。
该研究突出了家长和照顾者在癫痫患儿的知识、态度和行为方面存在的巨大差距,这间接对癫痫的管理产生了巨大影响。因此,对家庭和社区进行癫痫教育变得至关重要,这将有助于改善这些儿童的治疗效果、整体生活质量以及人际关系和社会关系。