TRIAL OF FAMILY INTERVENTIONS FOR CYSTIC FIBROSIS

描述：二十多年的研究记录了风险 与青少年及其家庭的慢性疾病有关， 包括不遵守医疗规定的比率很高， 行为和情绪困扰的发生率增加。 尽管如此 证据和这些问题对长期健康结果的重要性， 制定和评估针对青少年的家庭干预措施， 患有慢性病的人非常罕见。 一个主要原因是缺乏 干预研究是全球层面的关键结构，如 压力和应对方式进行了测量。 首席研究员的项目 在过去的四年里，研究的重点是发展 针对囊性纤维化（CF）青少年的特定情况措施， 他们的父母可以用来针对问题进行干预， 评估后续变化。 该项目的中心目标是比较两种方法的效果。 经验验证的干预措施，家庭教育（FE）和 行为-家庭系统疗法（BFST），标准医疗护理。 BFST 在减少冲突和提高沟通技巧方面显示出了希望 在患有各种疾病的青少年家庭中，包括糖尿病， 厌食症和注意力缺陷障碍 拟议的研究将是 对患有CF的青少年进行结构化干预的首次评估， 他们的父母 CF是高加索人最常见、最致命的遗传性疾病 人群，主要影响肺和胰腺。 它需要一个 复杂、耗时的日常医疗方案（胸部物理治疗， 改变饮食），这对青少年及其 父母 该研究是一项多中心、随机对照试验 这些干预措施：1）坚持医疗，2）家庭 冲突、沟通和技能，以及3）长期健康结果 （肺功能，发病率）。 这些结果将使用 生理（腕关节活动记录仪，吸入器测量仪），观察（录像 家庭日记、应对技能的角色扮演评估）和自我报告 （两个主要CF中心的青少年及其父母的报告将在 组 据推测，相对于其他群体， BFST组在这些结果测量上将显示出更积极的影响。

DESCRIPTION: More than two decades of research have documented the risks associated with chronic illness for both adolescents and their families, including high rates of noncompliance with medical treatment and an increased incidence of behavioral and emotional distress. Despite this evidence and the importance of these problems for long-term health outcomes, the development and evaluation of family interventions for adolescents who have a chronic illness are extremely rare. A major reason for the lack of intervention research is the global level at which key constructs, such as stress and coping, have been measured. The principal investigator's program of research over the past four years has focused on the development of situation-specific measures for adolescents with cystic fibrosis (CF) and their parents that can be used to target issues for intervention and evaluate subsequent change. The central goal of this project is to compare the effects of two empirically validated interventions, Family Education (FE)and Behavioral-Family Systems Therapy (BFST), to standard medical care. BFST has shown promise in reducing conflict and increasing communication skills in families of adolescents with a variety of disorders, including diabetes, anorexia, and attention-deficit disorder. The proposed study would be the first evaluation of structured interventions for adolescents with CF and their parents. CF is the most common, fatal genetic disease of Caucasian populations, primarily affecting the lungs and pancreas. It requires a complex, time-consuming daily medical regimen (chest physiotherapy, alterations in diet) that places great demands on adolescents and their parents. The proposed study is a multi-site, randomized controlled trial these interventions on: 1) adherence to medical treatment, 2) family conflict, communication, and skills, and 3) long-term health outcomes (pulmonary functioning, morbidity). These outcomes will be measured using physiological (wrist actigraphs, inhaler meters), observational (videotaped family diaries, role-play assessments of coping skills), and self-report (reports of adolescents and their parents at two major CF centers will be groups. It is hypothesized that, relative to the other groups, families in the BFST group will show more positive effects on these outcome measures.