63. The Maine Adolescent Council on Transition (ACT Maine): A resident-driven, Community Access to Child Health (CATCH) Grant Funded Project to Improve the Quality of Health Care Transition and Build Resilience in Youth With Chronic Illness and Their Families

Abstract

We observed youth with chronic illness (YCI) and their families struggle with transition to adulthood and noted a lack of resources to assist them in this process. Based on focus group feedback, we developed a resident-lead, positive youth development (PYD) program for YCI and their families. A group of residents at an academic medical center in Portland, Maine developed and implemented the PYD program, mentored by faculty. A needs assessment was conducted using focus groups for pediatric sub-specialists (n=7), YCI ages 13 to 24 (n=4), and parents of YCI (n=4). Providers were recruited via email and participants were recruited via sub-specialist referrals and office fliers. Groups were recorded by note-takers, transcribed, and separated into themes. Findings were analyzed using a derivative thematic approach. Themes were used to develop the recruitment methods, meeting logistics, curriculum content, and advisory board. After the focus groups, YCI and parents were invited to participate in the PYD program. Residents facilitated seven 2-hour meetings with YCI and their parents, which included activities and discussions about health care transition (HCT), stress management, leadership skills, and communication with health care providers. To gather information for program improvement, quantitative and qualitative data were collected on attitudes and perceptions using written surveys before and after each meeting. The Maine Medical Center Research Institute IRB approved the project. All three focus groups identified key problems related to HCT. Parents discussed the tension they feel between keeping their child healthy and encouraging them to take on increased responsibility for their health. YCI included HCT in the context of other life transitions, such as transition to college and living away from parents. Providers focused on logistics of HCT (i.e., when and how to start the process) and the resistance from families to the HCT process. All groups identified the inherent resilience YCI possess but also noted significant stressors and barriers to well-being. Attendance at monthly meetings was good (average of 2 to 3 teens and 2 to 3 parents per meeting). At the program's conclusion, surveys and interviews indicated that both YCI and parent participants had developed new skills and behaviors they hope will help them cope more effectively with chronic illness. They also indicated a preference for a larger group size in the future. This project demonstrates how a resident-driven CATCH grant can be used to develop a PYD program to address complex issues such as resilience, chronic illness, and health care transition. YCI, their parents, and sub-specialists describe different barriers to transition and require different approaches. These perspectives should be included in any transition program.