“It changed everything we do”: A mixed methods study of youth and parent experiences with a pilot exercise education intervention following new diagnosis of type 1 diabetes

Due to cardiovascular health benefits, increases in insulin sensitivity, and improved glycemic outcomes,1 regular physical activity (PA) is strongly encouraged for individuals with type 1 diabetes (T1D) by both the American Diabetes Association (ADA)2 and the International Society for Pediatric and Adolescent Diabetes (ISPAD).3 Exercise consensus guidelines recommend youth with T1D should aim to achieve at least 60 min of moderate-to-vigorous PA daily.3 Regular PA in children and adolescents has been shown to improve HbA1c, bone mineral density, blood lipid profiles, and body composition.4

Unfortunately, few youth with T1D meet PA guidelines due to several barriers,5,6 including fear of hypoglycemia (FoH); worry about loss of control over glucose levels; challenges with scheduling time for PA; low fitness levels; and perceived stigma.7., 8., 9., 10., 11. A synthesis of qualitative studies on barriers to PA in youth with T1D noted themes including: level of motivation to engage in PA; limited support from family, peers, and others; limited education and knowledge of how to address and prevent hypoglycemia; and communication between stakeholders (e.g., family, teachers, diabetes care team).12

The new onset period is a major life adjustment for many youth and their families.13., 14., 15., 16. Families receive a large amount of education on insulin administration, carbohydrate counting, and glucose monitoring to manage T1D.13,16,17 Youth with T1D must adjust to managing diabetes in their daily lives and adjust to using devices such as continuous glucose monitoring (CGM) and/or insulin pumps.18,19 PA education has not traditionally been included in standard new-onset educational content, perhaps due to concerns about contributing to additional burden by increasing required education during a period of significant adjustment and distress.14,15

Previous interventions promoting PA in youth with T1D have demonstrated feasibility, acceptability, and evidence of numerous physical health benefits.20., 21., 22., 23., 24. Given that FoH and concerns about glucose management are common reason that youth and their parents may have hesitations around engaging in PA, the new-onset period represents a unique opportunity to introduce key concepts that could help youth resume activities following diagnosis with a greater level of confidence, and to foster greater confidence in preventing and managing hypoglycemia. However, little is known about the potential impact of structured exercise and PA education in the new-onset period following diabetes diagnosis. Therefore, the goal of this mixed methods pilot study was to determine the feasibility and acceptability of delivering a structured exercise and PA education intervention with youth with new-onset T1D and their parents/caregivers. We also explored the acceptability of starting newly diagnosed youth with T1D on wearable technology (CGM and PA trackers) shortly after diagnosis. This paper reports on the parental and youth experiences in receiving exercise and PA education shortly after diagnosis.

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