一项针对患有癫痫的儿童和青少年父母的以家庭为重点的干预方案的可行性和试点研究

IF 2.3 3区医学 Q2 BEHAVIORAL SCIENCES

Epilepsy & Behavior Pub Date : 2025-07-30 DOI:10.1016/j.yebeh.2025.110627

Christopher McCusker, Sinead Hartley, Emma Hennessy, Eadaoin Whelan

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引用次数: 0

摘要

目的描述和评估一项以家庭为中心的干预计划（改善癫痫患儿预后- iice）的试点可行性研究的可接受性，该计划适用于受儿童癫痫影响的家庭。方法IOCE计划改编自先前发表的先天性心脏病儿童家庭干预计划。干预措施包括为期一天的家庭研讨会，每个家庭一次单独的后续会议，以及一本心理教育手册。它被送到了9个患有癫痫的儿童和青少年家庭。从基线到干预后1个月，评估自我报告的父母、家庭和儿童结果的可行性、可接受性和变化。结果家长对干预的接受程度较高。招募和保留数据表明，我们招募了有风险儿童的家庭（以癫痫发作频率和癫痫相关生活质量量表的概况为索引）。接受干预的人中有48%的人参与了这个项目，保留率达到100%。探索性分析表明，对儿童和家庭功能的测量有初步的积极影响。结论该方案具有良好的可行性和可接受性。试点结果是积极的；然而，由于样本量小（n = 9）且没有对照组，结果应谨慎解释。鉴于父母和家庭功能与儿童癫痫适应的相关性，该计划的进一步发展和试验是有必要的。

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A feasibility and pilot study of a family-focused intervention program for parents of children and adolescents with epilepsy

Objective

To describe and evaluate the acceptability of a pilot feasibility study of a family-focused intervention program (Improving Outcomes for Children with Epilepsy – IOCE) for families affected by pediatric epilepsy.

Methods

The IOCE program was adapted from a previously published family intervention program for children with congenital heart disease. The intervention included a one-day family workshop, one individual follow-up session for each family, and a psychoeducational manual. It was delivered to 9 families of children and teenagers with epilepsy. Feasibility, acceptability and changes in self-reported parent, family and child outcomes were assessed from baseline to 1-month post-intervention.

Results

Parents reported a high level of intervention acceptability. Recruitment and retention data suggested that we engaged families of children at risk (indexed by seizure frequency and profile on an epilepsy related quality of life scale). 48% of those offered the intervention engaged with the program and there was 100% retention rate. Exploratory analyses indicated preliminary positive effects on measures of child and family functioning.

Conclusions

Findings suggested good feasibility and acceptability of the IOCE program. Pilot outcomes were positive; however, results should be interpreted with caution given the small sample size (n = 9) and absence of control group. Given the relevance of parent and family functioning for child adjustment in pediatric epilepsy, further development and trialling of this program is warranted.

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来源期刊

Epilepsy & Behavior 医学-行为科学

CiteScore

5.40

自引率

15.40%

发文量

385

审稿时长

43 days

期刊介绍： Epilepsy & Behavior is the fastest-growing international journal uniquely devoted to the rapid dissemination of the most current information available on the behavioral aspects of seizures and epilepsy. Epilepsy & Behavior presents original peer-reviewed articles based on laboratory and clinical research. Topics are drawn from a variety of fields, including clinical neurology, neurosurgery, neuropsychiatry, neuropsychology, neurophysiology, neuropharmacology, and neuroimaging. From September 2012 Epilepsy & Behavior stopped accepting Case Reports for publication in the journal. From this date authors who submit to Epilepsy & Behavior will be offered a transfer or asked to resubmit their Case Reports to its new sister journal, Epilepsy & Behavior Case Reports.