The Adolescent Leadership Council: Group Mentoring for Youth with Chronic Illness

Up to 18% of all children have a special health care need, most of which involve a chronic physical condition. The frequency of childhood chronic physical illness increases with age, and teens (12-17 year olds) have a rate of chronic illness that is twice as high as younger children. There are significant negative consequences of having a chronic physical illness on the individual child and their family. These children miss three times as many school days and spend three times as many days sick in bed in comparison to their healthy peers. In addition, they are at increased risk of depression and other psychiatric illnesses and are more likely to get acutely ill. 30% of families affected by childhood chronic illness report at least one family member decreasing or stopping work as a result of the child’s illness. There is also an increase rate of chronic illness in children who live in poverty and who are from minority groups. According to a 2006 RI Health Department publication of Rhode Islanders 16-20 years old, 14% or 11,000 young adults in RI have a disability, which includes only part of the population of those with chronic physical conditions. In a national survey it was found that only 50% of youth with special health care needs had discussed the transition to adulthood with their pediatrician, and that only 15% had received support and guidance through this transition. In a 2004 survey of Rhode Island pediatricians the RI Health Department found that few pediatric practices had plans in place to support their patients with special health care needs as they transitioned to adult medical care and adulthood. Adolescence and the transition to adulthood is a critical time for all young adults and in particular for those with chronic illness. In a longitudinal study from Great Britain of children with chronic physical conditions it was found that the greatest predictor of unemployment at age 36 was greater health problems from age 20 to 25 years old. In a study of 19-25 year olds from Finland, those with chronic physical illnesses were less likely to be married, finish school, and live independently than their healthy peers. Clearly the transition to adulthood is a critical time for young adults socially, educationally, vocationally, and physically. However, there are few programs or strategies available to promote the successful transition to adulthood of adolescence with chronic physical conditions. This complex process requires the collaboration of parents, schools, doctors, and the young adults themselves.Master of Public Healt

Positive Youth Development at Camps for Youth with Chronic Illness: A Systematic Review of the Literature

This study aimed to systematically review all the literature on camps for youth with childhood onset chronic illness (COCI) utilizing the Positive Youth Development (PYD) framework to assess camp processes and psychosocial outcomes. This paper describes a unique dataset of 425 included studies published over the last 70 years and gives a broad overview of camp demographics, processes that align with PYD’s Big 3 (sustained adult-youth relationships, skill-building, and youth leadership) and measured outcomes that align with the PYD’s 5 Cs (Competence, Confidence, Character, Social Connectedness, and Compassion). Among the included studies, 36% included diabetes camps, 15% included camps accepting multiple illnesses, 12% included cancer camps, and 11% included asthma camps. The majority of participants were under the age of 16. While no study explicitly used the PYD approach, over 90% of studies described camps that deployed both active leadership and sustained positive relationships, while only 59% of studies described camps providing the opportunity to learn life skills. Although no study utilized the PYD 5 Cs framework for outcome measurement, 47% addressed outcomes related to Competence, 44% addressed Confidence, 33% addressed Connection, 4% addressed Compassion, and 2% addressed Character. This review highlights opportunities for camp leadership to align their programming with the PYD framework, to incorporate older adolescents and young adults and, ultimately, to improve positive adult outcomes for youth with COCI. It provides a starting point for future research evaluating illness-specific camps using a PYD approach

Character Development Pilot Evaluation of Two Programs for Youth with Chronic Illness

This article describes the pilot evaluation of two Positive Youth Development (PYD) programs for youth with child onset chronic illness (COCI), reporting how the programs influenced participants’ character development. College students with COCI led high school students with COCI through activities pertaining to different aspects of growing up with a chronic illness. Participants completed the Positive Youth Development Inventory-Short Form (PYDI-S), which measures seven domains of youth perceptions of the contribution to their development from the program. Participants reported that both programs helped them the most with personal standards, which corresponds well to character development on the full version of the Positive Youth Development Inventory (PYDI). They also had high scores on prosocial behavior and future orientation, both important domains for character development. We discuss the idea that interventions promoting character development for youth with COCI are critical for promoting a positive narrative for chronically-ill youth, their parents, and society

Growing Up With a Chronic Illness: Social Success, Educational/Vocational Distress

We compared adult educational, vocational, and social outcomes among young adults with and without childhood-onset chronic illness in a nationally representative US sample

Peer support of complex health behaviors in prevention and disease management with special reference to diabetes: systematic reviews

Abstract Objectives Examine Peer Support (PS) for complex, sustained health behaviors in prevention or disease management with emphasis on diabetes prevention and management. Data sources and eligibility PS was defined as emotional, motivational and practical assistance provided by nonprofessionals for complex health behaviors. Initial review examined 65 studies drawn from 1442 abstracts identified through PubMed, published 1/1/2000–7/15/2011. From this search, 24 reviews were also identified. Extension of the search in diabetes identified 30 studies published 1/1/2000–12/31/2015. Results In initial review, 54 of all 65 studies (83.1%) reported significant impacts of PS, 40 (61.5%) reporting between-group differences and another 14 (21.5%) reporting significant within-group changes. Across 19 of 24 reviews providing quantifiable findings, a median of 64.5% of studies reviewed reported significant effects of PS. In extended review of diabetes, 26 of all 30 studies (86.7%) reported significant impacts of PS, 17 (56.7%) reporting between-group differences and another nine (30.0%) reporting significant within-group changes. Among 19 of these 30 reporting HbA1c data, average reduction was 0.76 points. Studies that did not find effects of PS included other sources of support, implementation or methodological problems, lack of acceptance of interventions, poor fit to recipient needs, and possible harm of unmoderated PS. Conclusions Across diverse settings, including under-resourced countries and health care systems, PS is effective in improving complex health behaviors in disease prevention and management including in diabetes

Young Adult Counselors with Diabetes at Diabetes Camps: The Effect of Being a Peer Mentor on Counselors’ Health Behavior

Adolescents and young adults (AYA) with type I diabetes (T1D) often struggle with illness management. Although diabetes camps have been shown to improve blood sugar control among campers, the effect of the camp experience on counselors’ diabetes self-management has never been studied. In addition to the camp environment, it was hypothesized that peer factors among counselors, such as diabetes role modeling, would positively influence diabetes self-care behaviors and that counselors would be able to select diabetes role models based on these appropriate self-management behaviors. Counselors with T1D working at 2 summer camps were recruited to participate. Participants completed questionnaires including the Diabetes Behavior Rate Scale (DBRS) and a peer-assessment form in which participants were asked to nominate friends and diabetes role models, and to assign a role model score for each counselor. Hemoglobin A1C (HbA1c), a measure of blood sugar control, was obtained pre- and post-camp. Thirty-three participants completed the study. The average HbA1c score decreased 0.4% (p < .01) over the 6 to 10 weeks of camp indicating improved metabolic control at camp. The number of nominations for diabetes role model was associated with diabetes self-care (r = 0.351, p = 0.027). Diabetes role model scores were not associated with diabetes self-care (r = 0.272, p = 0.074). There was no correlation between HbA1c and diabetes self-care. The findings suggest that the camp counselor role is a potential target for intervention to promote positive outcomes for AYA with T1D. Lessons learned from how AYA with diabetes support one another at camp can be applied to community-based interventions for youth with T1D or other chronic illnesses