Jones Chloe, Atkinson Patricia, Memon Ayesha, Dabydeen Lyvia, Das Krishna B, Cross J Helen, Gillberg Christopher, Neville Brian G R, Scott Rod C, Reilly Colin
Research Department, Young Epilepsy, Lingfield, Surrey RH7 6PW, UK; UCL Great Ormond Street Institute of Child Health (ICH), 30 Guilford Street, London WC1N 1EH, UK.
Child Development Centre, Crawley Hospital, West Green Drive, Crawley, RH11 7DH West Sussex, UK.
Epilepsy Behav. 2019 Jan;90:37-44. doi: 10.1016/j.yebeh.2018.10.031. Epub 2018 Nov 27.
The aim of the study was to gain a comprehensive understanding of the experiences and needs of parents of young children with epilepsy from a total population sample. The parents (mothers (n = 38), fathers (n = 9)) of 40/53 (75% of total population) young children (1-7 years; 23 males, 17 females) with 'active' epilepsy (had a seizure in the last year or taking Anti-epileptic drugs (AEDs)) were interviewed either in person or over the telephone using a semistructured interview schedule. The families were resident in the south of the UK. The interviews were audio-recorded, transcribed, and coded using thematic analysis. Thematic analysis revealed six main themes: diagnostic journey, parental perception of epilepsy management, awareness and impact of associated neurobehavioral difficulties, inconsistent availability of therapeutic and educational supports, impact on family functioning, and need for parental support. Parents reported often having difficulty accessing a professional knowledgeable about epilepsy. While parents were generally satisfied with the initial information they received about seizures and their management, they reported that the association between epilepsy and neurobehavioral issues was often not broached. These developmental/behavioral difficulties often had a bigger impact on child wellbeing and family functioning, but provision of therapeutic and educational supports for the difficulties was often very patchy. Parents noted that early onset epilepsy and associated neurobehavioral difficulties often have a very significant impact on family functioning including increased restrictions on family activities and increased financial burden. Parents would like informational and emotional support to extend beyond the time of epilepsy diagnosis. There is a clear need for comprehensive childhood epilepsy services to include provision for identification and management of child neurobehavioral needs and a focus on family-centered care.
该研究的目的是从总体样本中全面了解幼儿癫痫患儿家长的经历和需求。对53名患有“活动性”癫痫（去年有过发作或正在服用抗癫痫药物（AEDs））的幼儿（1至7岁；23名男性，17名女性）中的40名（占总人数的75%）的家长（母亲（n = 38），父亲（n = 9））进行了访谈，访谈通过半结构化访谈提纲以面对面或电话方式进行。这些家庭居住在英国南部。访谈进行了录音、转录，并采用主题分析法进行编码。主题分析揭示了六个主要主题：诊断过程、家长对癫痫管理的认知、相关神经行为困难的认知及影响、治疗和教育支持的可获得性不一致、对家庭功能的影响以及对家长支持的需求。家长们报告称，他们常常难以找到一位了解癫痫知识的专业人士。虽然家长们总体上对他们最初收到的关于癫痫发作及其管理的信息感到满意，但他们表示，癫痫与神经行为问题之间的关联往往未被提及。这些发育/行为困难通常对儿童的幸福和家庭功能有更大影响，但针对这些困难提供的治疗和教育支持往往非常零散。家长们指出，早发性癫痫和相关的神经行为困难通常对家庭功能有非常重大的影响，包括对家庭活动的限制增加和经济负担加重。家长们希望在癫痫诊断之后仍能获得信息和情感支持。显然需要全面的儿童癫痫服务，包括识别和管理儿童神经行为需求，并以家庭为中心提供护理。
