Research On Family Management Of Childhood Disease

Eunice Kennedy Shriver National Institute Of Child Health & Human Development

Investigators

Linked publications, trials & patents

Abstract

Management of type 1 diabetes is a complex, intensive task, including multiple daily insulin injections or use of an insulin pump, multiple daily blood glucose testing, regulation of carbohydrate intake, and problem-solving to correct excessive blood glucose fluctuations. Careful management is important to prevent short- and long-term complications, including diabetic ketoacidosis and damage to the heart, kidneys, nerves, eyes, blood vessels, and other organs. Owing to both psychosocial and physiological processes, glycemic control typically worsens across pre-adolescence and adolescence. Poor adaptation to diabetes during adolescence is likely to persist into early adulthood, accelerating the risks of long-term medical complications and psychiatric sequelae. The integration of behavioral management principles into clinical care may counter the deterioration in glycemic control that typically occurs during this developmental period. The Family Management of Type 1 Diabetes Study tested the efficacy of a clinic-integrated family-based intervention approach using the WE*CAN applied problem solving approach a semi-structured process incorporating assessment and specification of target behaviors, identification of barriers and motivators, collaborative setting of goals, facilitation of problem-solving and coping skills, and provision of follow-up and support. A multi-site randomized controlled trial was conducted at four geographically diverse diabetes centers. Participants were 390 youth with type 1 diabetes age 9-14 and their parents. The intervention was delivered at each routine clinic visit across the 2-year study (mean of 7 visits). The primary outcome was glycemic control (hemoglobin A1c; HbA1c) assessed at each clinic visit. Participants in the WE*CAN manage diabetes family-based behavioral intervention demonstrated a lesser deterioration in glycemic control than those receiving standard care; this effect was stronger among adolescents than pre-adolescents (Nansel et al. 2012 PMID 22392172). As adolescence is an especially difficult developmental period for improving diabetes management; these findings have substantial clinical implications. Another important contribution of this work was the examination of intervention effect across socioeconomic status. Extending from the inverse equity hypothesis, people experiencing lower income may be less equipped to benefit from behavioral interventions, inadvertently exacerbating health disparities; however, the efficacy of behavioral interventions across income groups is rarely examined. We found that the WE*CAN intervention was similarly effective in improving glycemic control among youth with type 1 diabetes across income levels suggesting that this flexible problem-solving approach may optimize impact across income groups (Nansel et al 2015 PMID 26231856). Secondary analyses from this data have advanced our understanding of the associations of parenting behaviors with health outcomes such as adherence, glycemic control, and depression (e.g., Thomas et al. 2018 PMID 29782387, Dempster et al 2019 PMID 30694403). Work in the current year extends these efforts by examining typologies of parenting and their associations with health outcomes and intervention effect (Temmen et al. 2022 doi.org/10.1111/pedi.13397).