Creating Avenues for Parent Partnership (CAPP)

描述(由申请人提供)：患有癫痫和严重学习问题(SLP)的儿童的父母有很高的压力，需要帮助来管理他们孩子复杂的医疗和心理健康问题。我们的初步研究表明，压力的来源包括对信息的需求，以及缺乏与学校工作人员和医疗保健提供者的伙伴关系。我们建议，通过认知行为干预，“创建家长伙伴关系大道(CAPP)”，父母将发展知识、技能和自我效能，以：(A)与医疗保健提供者和学校工作人员建立伙伴关系，(B)能够更有效地管理他们孩子的医疗保健和学校需求，以及(C)报告与他们孩子的情况相关的较少压力。这项建议的主要目标是在同时患有癫痫和SLP的儿童的父母中试行CAPP干预。CAPP干预包括为期一天的认知行为计划和三次后续会议。主要样本将是50名儿童同时患有癫痫和系统性红斑狼疮的初级保健父母。家长将通过与大芝加哥癫痫基金会的合作伙伴关系来招募。我们将采用实验设计，将25名父母随机分成干预组或等待名单控制组。测量的变量包括压力源(儿童癫痫情况)、现有资源(SES、社会支持)、对问题的感知、压力源堆积(知识、技能和自我效能)和适应(痛苦、家庭生活质量和家庭需求)。数据将使用ANCOVA模型进行分析，以基线到强化后组的变化为结果，以治疗组(干预或等待名单)为解释变量。据我们所知，之前还没有针对癫痫和系统性红斑狼疮儿童的父母进行干预研究。这项研究的结果将为建立更广泛的试验提供必要的信息。公共卫生声明创建家长伙伴关系大道(CAPP)是一项健康促进干预措施，旨在让父母掌握技能，为患有癫痫和低智商的孩子寻求适当的医疗和教育机会。这将通过健康教育和与已学会穿越医疗保健系统的专家父母合作来实现。在适当的帮助下，这些孩子可以学习成为社会的生产性成员。

DESCRIPTION (provided by applicant): Parents of children who have both epilepsy and significant learning problems (SLP) have a high rate of stress and need assistance to manage their child's complex medical and mental health problems. Our preliminary research has shown that sources of stress include the need for information, and lack of partnerships with school personnel and health care providers. We propose that through the cognitive behavioral intervention, "Creating Avenues for Parent Partnership, (CAPP)" parents will develop the knowledge, skills and self-efficacy to :(a) build partnerships with health care providers and school personnel, (b) be better able to effectively manage their children's health care and school needs, and (c) report less stress associated with their child's condition.. The major goal of this of this proposal is to pilot test the CAPP intervention in parents of children who have both epilepsy and SLP. The CAPP intervention consists of a one-day cognitive behavior program and three follow-up sessions. The primary sample will be 50 primary care giving parents whose children have both epilepsy and SLP. Parents will be recruited through a partnership with the Epilepsy Foundation of Greater Chicago. We will use an experimental design randomly placing 25 parents in the intervention group or 25 parents in a wait-list control group. Variables measured include stressors (child seizure condition), existing resources (SES, social support), perception of the problem, stressor pile up (knowledge, skills and self-efficacy) and adaptation (distress, family quality of life, and family need). Data will be analyzed using an ANCOVA model, with the change from baseline to post-booster groups as the outcome, and treatment group (intervention or wait-list) as the explanatory variable. To our knowledge no previous intervention studies have been developed for parents of children with epilepsy and SLP. Findings from this study will provide essential information to build a more extensive trial. Public Health Statement Creating Avenues for Parent Partnership (CAPP) is a health promotion intervention that is designed to give parents the skills to seek appropriate medical care and education opportunities for their children with epilepsy and low IQ. This will be accomplished through heath education and work with expert parents who have learned to traverse the health care system. With the appropriate help, these children can learn to be productive members of society.