Caregiver experiences of an integrative patient-centered digital health application for pediatric type 1 diabetes care: Findings from a pilot clinical trial

Diabetes technology generates vital health data, but healthcare professionals (HCP) and patients must navigate multiple platforms to access it. We developed a digital health platform, co-designed with patients and families living with type 1 diabetes (T1D) and their HCPs, that aim to support a collaborative care experience through shared access to diabetes data, clinical recommendations, and resources. We describe caregivers' views on the platform's impact on clinic visits and child self-management in children with T1D. A six-month observational pilot study at BC Children's Hospital Diabetes Clinic in British Columbia, Canada, gathered data through surveys and interviews. Surveys were administered to caregivers and HCPs at different time points throughout the study; 18 qualitative interviews were conducted with caregivers at the conclusion of the study. Quantitative data were summarized descriptively. Interview data were transcribed, coded using open and systematic coding, and subsequent inductive thematic analysis. Eighteen caregivers completed the surveys, and 11 HCP participants submitted 41 surveys (approximately 3-4 each) after using the platform. Most caregivers (61%; 11/18) found the platform helpful, and 56% (10/18) reported that using the platform made their clinical visits and recommendations more personalized. Nearly all HCPs (90%; 37/41) were satisfied with the platform's ability to support clinical visits. Themes identified from caregiver qualitative interviews revealed that (1) the platform provided a convenient connection that improved preparedness and empowered caregivers in managing their child's T1D; (2) the platform's value was driven by the healthcare team's usage of it; and (3) caregivers felt hopeful that the platform could better support their child's T1D management. The platform could foster a collaborative and personalized care experience that enables caregivers to engage in diabetes self-management and feel connected to their healthcare team. These results will guide the future development, evaluation, and implementation of the platform.