Peer Mentoring to Improve Self-Management in Youth with IBD

同伴指导可改善 IBD 青少年的自我管理

• 批准号: 10348216
• 负责人: LAURA M MACKNER
• 金额: $ 55.12万
• 依托单位: RESEARCH INST NATIONWIDE CHILDREN'S HOSP
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-04-12 至 2024-02-29
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10348216
• 关键词: Activities of Daily Living; Address; Adult; Area; Attention; Biological Markers; Brothers; Child; Childhood; Chronic Disease; Communities; Control Groups; Coping Skills; Disease; Disease Outcome; Disease remission; Educational Activities; Emotional; Enrollment; Focus Groups; Funding; General Population; Goals; Impairment; Inflammatory Bowel Diseases; Intervention; Lead; Learning; Life; Measures; Mediating; Medical; Medical Care Costs; Mentors; Occupational; Outcome; Parents; Participant; Pilot Projects; Play; Privatization; Public Health; Quality of life; Randomized Controlled Clinical Trials; Resources; Risk; Self Efficacy; Self Management; Sister; Social support; Standardization; Stigmatization; Training Support; Uncertainty; United States National Institutes of Health; Youth; clinically significant; comparison group; coping; efficacy evaluation; experience; functional disability; improved; improved functioning; indexing; innovation; neglect; online community; peer; peer coaching; post intervention; programs; recruit; role model; satisfaction; screening; secondary outcome; sex; social; social stigma; trial comparing

PROJECT SUMMARY/ABSTRACT Optimal self-management of a chronic illness results in minimizing its negative impact on life. Thus, it includes managing its effects on life as well as medical self-management. Yet self-management interventions typically focus only on medical management. This is a problem because 1) up to 35% of youth with IBD experience clinically significant difficulty in other areas of self-management, particularly in managing the social and overall impact of the disease on life (e.g., quality of life), even when the disease is inactive; and 2) these problems are predictive of occupational, social and emotional problems in adulthood. In IBD, $5.5 billion is lost each year in workforce nonparticipation alone. This suggests youth with IBD are at continued risk for inadequate self- management of the effect of IBD on their lives as adults. The objective of this study is to address these areas of impairment that persist even during remission with a multifaceted peer mentoring program. Mentoring programs are common in the general population and are well-known to improve a plethora of outcomes, including social, emotional and academic outcomes, all of which are necessary for successfully managing life with IBD. Peer mentoring programs in particular offer innovative advantages over other forms of intervention for youth with IBD: 1) A peer mentor is a role model who normalizes and de-stigmatizes the disease in a way that a professional cannot, and 2) With a peer mentor, self-management activities take place within the community, promoting generalization and independence in ways that traditional interventions do not. Despite widespread enthusiasm for peer mentoring in pediatric chronic illness, such programs have received little empirical attention. Our mentoring program was developed via focus groups, an NIH-funded pilot study, national mentoring resources, and the PI's 10 years of experience with Big Brothers Big Sisters. It consists of year-long, 1:1 mentee-mentor relationships with group self-management activities, a private online community, and a parent support component. Our pilot study demonstrates feasibility, satisfaction, and improvement in the areas of quality of life (QOL), functioning in typical life activities, IBD self-efficacy, and rates of remission. In the proposed study, 200 youth and their parents, and 100 mentors will be enrolled in this multisite, randomized controlled clinical trial comparing those in the Mentoring Program to an Educational Activity comparison group in the areas of QOL, functioning in typical life activities, and disease outcomes (e.g., biomarker and standardized indices). Mechanisms that contribute to outcomes, including perceived stigma, disease-related self-efficacy, coping and disease uncertainty will be examined as well. A mentoring program is an innovative self-management intervention with broad appeal and applicability across chronic illnesses that can help youth manage areas of impairment that persist even with inactive disease, and potentially into adulthood.

项目总结/摘要 慢性病的最佳自我管理可以最大限度地减少其对生活的负面影响。因此，它包括 管理其对生活的影响以及医疗自我管理。然而，自我管理干预通常 只专注于医疗管理。这是一个问题，因为1）高达35%的患有IBD的青年 在自我管理的其他方面存在临床显著困难，特别是在管理社会和整体方面 疾病对生命的影响（例如，生活质量），即使疾病是不活跃的;和2）这些问题是 预测成年后的职业、社会和情感问题。在IBD中，每年损失55亿美元， 只有劳动力不参与。这表明患有IBD的年轻人持续存在自我不足的风险， 管理IBD对他们成年生活的影响。本研究的目的是解决这些问题 通过多方面的同伴指导计划，即使在缓解期间也持续存在的障碍领域。辅导 程序在一般人群中是常见的，并且众所周知可以改善过多的结果， 包括社交、情感和学业成果，所有这些都是成功管理生活所必需的。 关于IBD特别是同伴指导计划提供了比其他形式的干预创新优势 对于IBD青少年：1）同伴导师是一个榜样，他在某种程度上使疾病正常化和消除耻辱 专业人士不能，2）与同伴导师，自我管理活动发生在 社区，促进普遍性和独立性的方式，传统的干预措施没有。尽管 对儿科慢性病同伴指导的广泛热情，这种计划几乎没有得到 经验的注意。我们的指导计划是通过焦点小组开发的，这是一项NIH资助的试点研究， 全国辅导资源，以及PI的10年的经验，与大哥哥大姐妹篇。它包括 为期一年的1：1的学员-导师关系，小组自我管理活动，私人在线社区， 和父母支持组件。我们的试点研究表明， 生活质量（QOL）、典型生活活动功能、IBD自我效能和缓解率。在 200名青少年及其父母和100名导师将参加这项多地点、随机 一项对照临床试验，将指导计划中的受试者与教育活动对照组进行比较 在QOL、在典型生活活动中的功能和疾病结果（例如，生物标志物和 标准化指数）。有助于取得成果的机制，包括可感知的耻辱感、与疾病有关的 自我效能，应对和疾病的不确定性也将被检查。辅导计划是一种创新的 自我管理干预具有广泛的吸引力和适用性，可以帮助青少年的慢性疾病 管理即使在非活动性疾病中也会持续存在的损伤区域，并可能持续到成年。