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.
Managing chronic illness is one of the main challenges facing our health care system. This study is an important first step in developing a peer mentoring program for improving self-management in youth with inflammatory bowel disease, so that they can learn to live with a challenging chronic illness and become productive, fulfilled adults in society.
