Successful management of diabetes in youth is heavily dependent upon family adaptation to the affective, behavioral, and cognitive demands imposed by the disease. Poor adaptation to diabetes during adolescence is likely to persist into early adulthood, accelerating the risks of both long-term medical complications and psychiatric sequelae. Research to date suggests that adherence, quality of life, and glycemic control could be enhanced if behavioral interventions were routinely implemented as part of standard care. This series of studies examines determinants of health outcomes, and tests the efficacy of a clinic-integrated behavioral intervention for families of youth with type 1 diabetes.
This longitudinal study examined the influence of family, social, and behavioral variables on diabetes self-management behaviors with a particular focus on adolescent developmental transitions. One goal of this study was to identify factors that predict adherence and glycemic control of youth during this transition period. Self-efficacy, maturity, family and social support, and attitudes toward diabetes management were assessed in a sample of 87 adolescents with type 1 diabetes (ages 10 to 16) and their parents. Assessments were obtained at baseline, 6 months, 12 months, and 24 months.
Participants in this study were recruited from two pediatric clinical sites: a university-affiliated clinic and a clinic housed in a pediatric hospital. A total of 81 youth (ages 11 to 16) with type 1 diabetes, along with a parent or guardian, were recruited and randomized to receive either educational materials or a "personal trainer" intervention. Based on principles of motivational interviewing and applied behavior analysis, the intervention included six in-person contacts over approximately two months supplemented with telephone contacts. The intervention protocol was administered by specially trained undergraduate and graduate students, who served as "diabetes personal trainers." They assisted youth to assess diabetes management practice difficulties and barriers, set goals for improving diabetes management practices, and engaged in problem-solving to meet these goals. An intervention effect on glycemic control was observed post-intervention and was maintained, virtually unchanged in magnitude, through 2-year follow-up. The intervention effect was observed among adolescents, but not among pre-adolescents.
The purpose of this pilot study was to examine diabetes self-management and psychosocial concomitants before, during, and after the transition from pediatric diabetes clinic to adult diabetes care. It included: a survey of youth who are more than one year from turning 18 to determine their expectations regarding the transition; an assessment of the experiences of youth ages 18 to 22 who provided their retrospective views on the transition period; and a comparison of the experiences of youth in a pediatric clinic that involve an adult care physician in the transition to adult care with the experiences of youth in a matched clinic that provides the standard transition experience. It is expected that parents and children who have not been provided with a coordinated transition will have a poorer psychosocial profile and that there will be a decline in diabetes management and glycemic control relative to those youth who have a coordinated transition.
The study employed a randomized experimental design in which youth-parent dyads attending one of four clinical sites were stratified by degree of glycemic control and randomized to receive either standard care or a clinic-integrated behavioral intervention. The intervention was based on both individual and family-system theoretical perspectives, including social cognitive theory, self-regulation, and authoritative parenting. It was designed to provide experiential training for families in the use of a problem-solving approach to promote improved parent-child teamwork and more effective problem-solving skills for diabetes management. The intervention was designed to be applicable to the broad population of youth with diabetes and their families, flexibly implemented and tailored to the varying needs of families, and delivered at a low intensity over time to meet the changing needs and roles of families during the period in which responsibility for diabetes management typically undergoes transition. A combination of in-person assessments, telephone assessments, and in-clinic data collection were utilized to assess glycemic control, adherence, quality of life, psychological status, and hypothesized mediators of these outcomes. A pilot study indicated high perceived relevance of the intervention approach by families across the age range, and strong feasibility of integrating the approach into the clinical setting. Findings from the main trial demonstrated a positive intervention effect on glycemic control at two-year follow-up. This intervention effect was observed specifically among adolescents, but not pre-adolescents.
Tonja Nansel, Ph.D.
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