Design and development of a stepped-care behavioral intervention to support parents of young children newly diagnosed with type 1 diabetes

Abstract

One of the most common chronic conditions of childhood, the prevalence of type 1 diabetes (T1D) in young children is increasing. Early childhood development complicates optimal T1D management and glycemic outcomes. Parents are at risk for elevated psychological distress, especially immediately following diagnosis. Few empirically supported interventions are available to support parents and promote optimal T1D management during this vulnerable period. This paper reports on the development and study design of First STEPS: Study of Type 1 in Early childhood and Parenting Support. The aim of this trial is to evaluate the efficacy of a stepped care behavioral intervention for parents of young children over the first year following a new T1D diagnosis. The stepped care design provides participants with up to three intensity levels, or steps, of clinical behavioral intervention support based on need, compared to usual care. Intervention steps include peer parent coaching, telephone-based behavioral support, personalized psychological assessment and recommendations, and intensive assessment of T1D glycemic management with recommendations. Primary outcomes include children's glycemic control and parents' psychosocial functioning. Secondary outcomes include children's behavioral and psychosocial functioning. Exploratory analyses will evaluate demographic, disease-specific, and psychosocial factors related to progression in and response to each step of the intervention.

“I'm essentially his pancreas”: Parent perceptions of diabetes burden and opportunities to reduce burden in the care of children <8 years old with type 1 diabetes

“…Educational and psychosocial interventions that address common parent‐reported burdens may help parents to better manage their stresses and model positive attitudes towards diabetes for their children . For example, our results suggest that an effective intervention should equip parents with realistic expectations about glucose variability in young children, provide comprehensive continuous education in new technologies and overall diabetes care, and train parents in how to explain diabetes treatment to other caregivers and adults in their child's life.…”

Feasibility and pilot study of an intervention to support active lifestyles in youth with type 1 diabetes: The ActivPals study

“…Parents worry may have increased as young people's problems with diabetes treatment increased (treatment 1 subscale). Previous research has highlighted that more psychosocial support is needed for parents as they adjust to a new diagnosis of T1D and through changes in their child's lifestyle . The future trial will include a focus on providing psychosocial support to parents and youth.…”

Diabetes camp still matters: Relationships with diabetes‐specific distress, strengths, and self‐care skills

“…Parents of both children and adolescents reported experiencing higher levels of diabetes‐specific emotional distress than their children. Many clinical interventions targeting diabetes distress focus on the person with diabetes, not on the parent . Recommendations regarding psychosocial screening in diabetes clinics focus on only assessing the youth with diabetes, not their parent .…”

“…Contrary to our hypothesis, youth did not report changes in perceived diabetes-specific strengths, even though they the person with diabetes, not on the parent. 28,29 Recommendations regarding psychosocial screening in diabetes clinics focus on only assessing the youth with diabetes, not their parent. [30][31][32] Current findings suggest that assessment protocols and intervention studies consider assessing parent perspectives.…”