Resourcefulness Intervention to Promote Self-Management in Parents of Technology-Dependent Children

项目摘要/摘要 需要机械通风或喂养等救生技术的儿童的父母照顾者 管子必须保持一周7天、每天24小时的高度警惕。他们报告了更高水平的 压力大，自我管理行为受损，心理和身体健康比其他人差 照料者群体，这大大增加了他们的死亡风险。依赖技术的儿童 (约600,000人)是患有复杂慢性病的儿童中病情最重、最脆弱的一部分 美国的情况。他们占所有出院回家儿童的20%，但 占儿童医疗支出的61%，每年高达1100亿美元。尽管有不利的 对于照顾者的后果，没有任何干预措施来满足他们的具体需求。机智 培训，(认知-行为自我管理干预)已被证明可以改善心理和 身体结果，调节压力的影响，并加强向护理接受者提供的护理。一个 足智性训练干预(RTI)将在一项针对注意力控制的随机试验中进行测试 一群人。RTI包括面对面的会议，教授社交(寻求帮助)和个人(自助) 足智多谋的技能、持续的网络访问技术照顾者的RTI视频和视频片段- 依赖儿童描述日常生活中足智多谋的技能应用，4周的技能强化 每天写日记，前4周每周打一次电话，2个月和4个月进行强化训练 注册后。注意控制组将在前4周和2点和2点每周接到电话 注册后4个月，外加任何日常护理。研究的目的是：1)确定RTI是否 与注意力控制相比，改善心理(心理HRQOL抑郁认知，抑郁症状， 评估的压力，负担)和身体结果(身体HRQOL，慢性压力[头发皮质醇])超过9 在控制协变量(父母种族和民族)后，依赖技术的儿童的父母的月 性别、家庭收入和儿童的功能地位、技术类型)。2)确定是否更改了 心理和生理结果是由父母机智水平的变化调节的，基于 干预条件。3)比较9个月内的自我管理行为(睡眠、积极的健康实践) 在接受RTI和注意力控制的父母中。4)探索足智多谋是否是调解人 基线自我管理的干预条件与自我管理行为控制 行为超过9个月。5)探索自我管理行为与父母的关系 基于干预条件的心理和生理结果。我们的研究将是第一个测试 这一照顾者群体的认知行为RTI。6)比较目标儿童的急诊室就诊、住院天数 根据父母的干预情况，超过9个月。如果被证明是有效的，它可以被复制到其他 患有复杂慢性病的儿童的照顾者，具有很强的实践潜力。

Project Summary/Abstract Parent caregivers of children who require life-saving technology such as mechanical ventilation or feeding tubes must maintain a high level of vigilance 24 hours a day, 7 days a week. They report greater levels of stress, compromised self-management behaviors and poorer psychological and physical health than other caregiver groups which dramatically increases their mortality risk. Technology-dependent children (approximately 600,000) are among the sickest and most vulnerable subset of children with complex chronic conditions in the United States. They comprise 20% of all children discharged from the hospital to home, yet account for 61% of healthcare spending for children, up to $110 billion annually. Despite the adverse consequences for caregivers, there are no interventions to meet their specific needs. Resourcefulness Training, (cognitive-behavioral self-management intervention) has been shown to improve psychological and physical outcomes, mediate the effects of stress, and enhance the care provided to care-recipients. A Resourcefulness Training Intervention (RTI) will be tested in a randomized trial against an attention control group. The RTI includes face-to-face session for teaching social (help-seeking) and personal (self-help) resourcefulness skills, ongoing web access to the RTI video and video vignettes of caregivers of technology- dependent children describing resourcefulness skill application in daily life, 4 weeks of skills' reinforcement using daily journal writing, weekly phone calls for the first 4 weeks, and booster sessions at 2 and 4 months post enrollment. The Attention Control group will receive weekly phone calls for the first 4 weeks and at 2 and 4 months post enrollment plus any usual care. The aims of the study are to: 1) Determine whether the RTI versus Attention Control improves psychological (mental HRQoL depressive cognitions, depressive symptoms, appraised stress, burden) and physical outcomes (physical HRQoL, chronic stress [hair cortisol]) over 9 months in parents of technology-dependent children, after controlling for covariates (parent race/ethnicity and gender, family income, and children's functional status, type of technology). 2) Determine whether changes in psychological and physical outcomes are mediated by changes in parents' levels of resourcefulness based on intervention condition. 3) Compare self-management behavior (sleep, positive health practices) over 9 months in parents who received RTI versus Attention Control. 4) Explore whether resourcefulness is a mediator between intervention condition and self-management behaviors controlling for baseline self-management behavior over 9 months. 5) Explore the relationship between self-management behavior and parent psychological and physical outcomes based on intervention condition. Our study will be the first to test a cognitive-behavioral RTI for this caregiver population. 6) Compare target children's ER visits, hospital days over 9 months based on parent intervention condition. If shown to be efficacious, it can be replicated with other caregivers of children with complex chronic conditions with strong potential for translation into practice.