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）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精神健康问题。我们的初步研究表明，压力的来源包括对信息的需求，以及与学校人员和卫生保健提供者缺乏伙伴关系。我们建议，通过认知行为干预，“为家长伙伴关系创造途径（CAPP）”，家长将发展知识、技能和自我效能感，以：(a)与卫生保健提供者和学校人员建立伙伴关系，(b)能够更好地有效管理孩子的卫生保健和学校需求，以及(c)减少与孩子状况相关的压力。本提案的主要目标是对同时患有癫痫和SLP的儿童的父母进行CAPP干预的试点测试。CAPP干预包括为期一天的认知行为项目和三次随访。主要样本将是50位提供初级保健的父母，他们的孩子同时患有癫痫和SLP。家长将通过与大芝加哥癫痫基金会的合作来招募。我们将采用实验设计，随机将25名家长分为干预组或25名家长分为等候名单对照组。测量的变量包括压力源（儿童癫痫发作情况）、现有资源（社会经济地位、社会支持）、对问题的感知、压力源积累（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，从基线到加强后组的变化作为结果，治疗组（干预或等待名单）作为解释变量。据我们所知，以前没有针对癫痫和SLP患儿父母的干预研究。这项研究的结果将为开展更广泛的试验提供必要的信息。公共卫生声明为父母伙伴关系创造途径（CAPP）是一项促进健康的干预措施，旨在使父母掌握为患有癫痫和低智商儿童寻求适当医疗保健和教育机会的技能。这将通过健康教育和与已经学会在卫生保健系统中工作的专家父母合作来完成。在适当的帮助下，这些孩子可以学会成为对社会有贡献的成员。

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.