Developing a Peer Mentoring Program to Improve Self-Management in Youth with IBD

制定同伴指导计划以改善 IBD 青少年的自我管理

• 批准号: 8639591
• 负责人: LAURA M MACKNER
• 金额: $ 17.8万
• 依托单位: RESEARCH INST NATIONWIDE CHILDREN'S HOSP
• 依托单位国家: 美国
• 财政年份: 2013
• 资助国家: 美国
• 起止时间: 2013-04-01 至 2016-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8639591
• 关键词: Activities of Daily Living; Address; Adult; Area; Brothers; Caring; Child; Childhood; Chronic Care; Chronic Disease; Collaborations; Coping Skills; Data; Development; Disease; Disease Outcome; Education; Emotional; Focus Groups; General Population; Goals; Health; Healthcare Systems; Inflammatory Bowel Diseases; Intervention; Lead; Learning; Life; Medical; Mentors; Multi-Institutional Clinical Trial; Occupational; Outcome; Parents; Participant; Persons; Pilot Projects; Play; Positioning Attribute; Problem Solving; Procedures; Program Effectiveness; Quality of life; Recruitment Activity; Reporting; Research; Resources; Risk; Role; Self Efficacy; Self Management; Sister; Site; Social Functioning; Social Problems; Social support; Societies; System; Testing; Training; Uncertainty; Work; Youth; base; clinically significant; comparison group; coping; design; expectation; experience; improved; innovation; meetings; multi-component intervention; neglect; peer; programs; prototype; psychosocial; public health relevance; role model; satisfaction; screening; social; success

DESCRIPTION (provided by applicant): Optimal self-management is managing a chronic illness so as to minimize its impact on typical life activities. As such, it encompasses medical, role, and emotional management, but self-management interventions typically focus on medical management. This is a problem because up to 35% of youth with inflammatory bowel disease (IBD) experience clinically significant difficulty in the other areas of self-management, particularly in managing social functioning and the overall impact of the disease on typical life activities. In fact, social difficulty may be even more common than other problems in pediatric IBD. Childhood social problems are predictive of occupational, social and emotional problems in adulthood, and in IBD, $5.5 billion is lost each year due work force nonparticipation. This suggests poor self-management may continue through adulthood. This continuity from childhood to adulthood needs to be broken. The absence of multifaceted interventions addressing these neglected areas of self-management places youth with IBD at continued risk for inadequate self-management in adulthood. This study will address this important gap by developing an intervention that will improve self-management via a peer mentoring program. Mentoring programs are common in the general population and are well-known to improve a plethora of outcomes for at-risk youth, including social, emotional and academic outcomes, all of which are necessary for successful adulthood. Peer mentoring programs in particular offer advantages over other forms of intervention: A peer mentor is a role model who engages in typical life activities and normalizes and de-stigmatizes the disease in a way that a professional cannot. Our ultimate goal is to improve self management in youth with IBD so that they can learn to manage this life-long disease while living personally meaningful lives. The objective of this study is to develop and demonstrate the feasibility of a multifaceted peer mentoring program to improve neglected areas of self-management in pediatric IBD. Based on previous research and our focus group data, the program format will be a one-on-one mentee-mentor relationship with group self-management activities and a parent support network. Our 10-year collaboration with Big Brothers Big Sisters will inform procedure development (e.g., mentor screening, training). We will investigate the feasibility, acceptability and satisfaction with the peer mentoring program and obtain preliminary information about potential mechanisms (self-efficacy, illness uncertainty, coping, social support) and outcomes (social functioning, functional ability, QOL) of the mentoring program. Assessments of youth in the mentoring program and those in the ¿enhanced education¿ comparison group will occur at baseline, 6 and 12 months. This formative work will improve the prototype of the peer mentoring program and demonstrate feasibility of successfully recruiting and matching mentees and mentors, placing us in an ideal position to construct and execute a multi-site clinical trial. If successful, the impact of the resulting mentoring program will be quite large. It is expected to improve important areas of self-management so that youth can learn to live with a challenging chronic illness and become productive, fulfilled adults in society.

描述（由申请人提供）：最佳自我管理是管理慢性疾病，以尽量减少其对典型生活活动的影响。因此，它包括医疗，角色和情绪管理，但自我管理干预通常侧重于医疗管理。这是一个问题，因为高达35%的炎症性肠病（IBD）青年在自我管理的其他领域经历了临床上显著的困难，特别是在管理社会功能和疾病对典型生活活动的整体影响方面。事实上，社交困难可能比儿童IBD的其他问题更常见。儿童期的社会问题预示着成年后的职业、社会和情感问题，在IBD中，由于劳动力不参与，每年损失55亿美元。这表明，不良的自我管理可能会持续到成年。这种从童年到成年的连续性需要被打破。缺乏针对这些被忽视的自我管理领域的多方面干预措施，使IBD青年在成年后继续面临自我管理不足的风险。这项研究将通过开发一种干预措施来解决这一重要的差距，这种干预措施将通过同伴指导计划来改善自我管理。辅导计划在普通人群中很常见，众所周知，它可以改善处于风险中的青少年的大量成果，包括社会，情感和学术成果，所有这些都是成功成年所必需的。特别是同伴指导计划提供了优于其他形式干预的优势：同伴导师是一个榜样，他参与典型的生活活动，并以专业人士无法做到的方式使疾病正常化和去污名化。我们的最终目标是改善IBD青少年的自我管理，使他们能够学会管理这种终身疾病，同时过上有意义的生活。本研究的目的是开发和证明多方面的同伴指导计划的可行性，以改善被忽视的领域的自我管理，在小儿IBD。根据以前的研究和我们的焦点小组数据，该计划的形式将是一对一的辅导员与小组自我管理活动和家长支持网络的关系。我们与大哥哥大姐妹篇的10年合作将为程序开发提供信息（例如，导师筛选、培训）。我们将调查同伴指导计划的可行性、可接受性和满意度，并获得有关潜在机制（自我效能、疾病不确定性、应对、社会支持）和结果（社会功能、功能 能力，QOL）的指导计划。对辅导计划中的青年和"强化教育“对照组中的青年的评估将在基线、6个月和12个月时进行。这项形成性工作将改进同行指导计划的原型，并证明成功招募和匹配学员和导师的可行性，使我们处于构建和执行多中心临床试验的理想位置。如果成功，由此产生的指导计划的影响将是相当大的。预计它将改善自我管理的重要领域，使青年能够学会与具有挑战性的慢性病共存，并成为社会上有生产力和有成就感的成年人。