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To help mitigate potential complications often experienced by adolescents with type 1 diabetes (T1D) during the transition to adult healthcare, transition care programs aim to provide developmentally appropriate healthcare, promote adolescent decision-making and self-care skills, and prepare adolescents for adult diabetes care. However, there is limited research considering parent/caregiver needs during the transition preparation process for adolescents with T1D.
To identify parent/caregiver perspectives prior to taking part in a transition care intervention involving group education sessions and peer support for parents/caregivers of adolescents with T1D.
Pre-intervention, semi-structured interviews were conducted with parents/caregivers of adolescents (14–16 years) with T1D followed in a tertiary care paediatric diabetes clinic and participating in a pilot, randomised controlled trial: The Group Education Trial to Improve Transition for Parents/Caregivers of Adolescents with T1D (ClinicalTrials.gov ID: NCT05445284). We conducted a reflexive thematic analysis to identify key aspects of the intervention that may help support parents/caregivers of adolescents with T1D during their transition to adult care.
Of the 17 parents/caregivers randomized to the intervention group, 13 completed pre-intervention interviews.
Four themes were generated from the parents/caregivers, including (1) Creating a Community of Learners (i.e., importance of fostering a bidirectional and supportive environment for parents/caregivers), (2) Psychological Perspectives of Parenting (i.e., acknowledgement of shifting parental/caregiver roles during adolescents’ transition), (3) Diabetes Management During Adolescence (i.e., identification of relevant diabetes education topics to be covered), and (4) Ideal Format and Delivery of the Program (i.e., practical recommendations for the logistics of the intervention).
The findings provide practical and pragmatic suggestions to refine the parent/caregiver-based transition of care intervention for a future, full-scale trial, including addressing parental/caregiver needs as they learn how to best support their adolescent with T1D during transition to adulthood. Future transition programmes for adolescents with T1D may also benefit by incorporating aspects of the current transition readiness program for parents/caregivers of adolescents with T1D.
Type 1 diabetes (T1D) demands self-management skills, knowledge and confidence to prevent medical complications. Adolescents living with T1D have distinct developmental challenges resulting in a worsening in glycaemic stability, irregular care and an increased risk for complications all while transitioning to adult healthcare. Age-specific online platforms could facilitate transition by fostering self-management education and support. The Support online self-guided training platform has been shown to increase the confidence of adults with T1D in managing their glycaemia. We aim to test the effectiveness of Support-t (ie, adapted for youth), compared with usual care, in improving haemoglobin A1c (HbA1c) and to understand the context of its implementation.
We will conduct a multisite, assessor-blinded, randomised controlled, parallel group, two-arm, superiority trial, evaluating effectiveness and implementation of Support-t versus usual care in 200 adolescents (14–16 years old) living with T1D. The active arm will have an 18-month access to Support-t, and their healthcare team will be trained on the platform’s content. The control arm will receive usual care. The primary outcome is HbA1c at 18 months. Secondary outcomes include self-efficacy for diabetes self-management, transition readiness, diabetes-specific quality of life, diabetes distress, continuous glucose monitoring metrics, number of severe hypoglycaemic events, diabetic ketoacidosis, T1D-related emergency department visits and hospitalisations as well as engagement and satisfaction. A subgroup of participants in the active arm and of healthcare providers will be interviewed assessing barriers, facilitators, engagement and fidelity of the intervention. Primary analysis will be by intention-to-treat. The difference in mean HbA1c at 18 months (with a 95% CI) will be calculated between both arms. A cost-effectiveness analysis is also planned.
December 8, 2024 version of the protocol was approved by the McGill University Health Centre Research Ethics Board (MP-37-2024-9734). Results will be disseminated through peer-reviewed publications and patient-partners’ network.
ClinicalTrials.gov (NCT05910840).
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