Keely Bebbington

Background: Advances in the understanding of type 1 diabetes (T1D) natural history have enabled screening for islet autoantibodies and the detection of presymptomatic (early-stage) T1D prior to clinical presentation and the need for insulin replacement therapy. As screening programs expand, increasing numbers of children are being identified with early-stage T1D, creating a pressing need for relevant, accessible, evidence-based educational resources. Due to the rapidly changing paradigm of T1D care in such settings, many health care professionals currently lack awareness or guidance on which educational resources to recommend to families. To date, no review has systematically identified and evaluated educational resources for families navigating early-stage T1D or for health care professionals supporting them. Objective: This scoping review aims to (1) systematically identify and evaluate educational resources for early-stage T1D; (2) assess resource readability, understandability, quality, and credibility; (3) create an inventory of resources consistent with current care and health literacy guidelines; and (4) identify resource gaps and priorities for future development. Methods: A comprehensive search of peer-reviewed (MEDLINE, CINAHL, PsycInfo, and Scopus) and gray literature databases (Google advanced searches and targeted searches of professional organizations, advocacy groups, research consortiums, and screening programs) will be conducted to identify English-language resources (eg, fact sheets, websites, videos, and infographics). Resources must target, or be suitable for adaptation for, audiences including youth (aged <25 years), families, parents, carers, and/or health care professionals. Resources must provide information about early-stage T1D, monitoring of early-stage T1D, trajectories, psychosocial aspects, or care navigation. Eligible resources will undergo standardized assessment using validated tools for readability (Flesch-Kincaid Grade Level [FKGL] and Simple Measure of Gobbledygook [SMOG]), understandability (Patient Education Materials Assessment Tool [PEMAT]), information quality (Quality Evaluation Scoring Tool [QUEST]), and credibility (adherence to current early-stage T1D guidelines). Two reviewers will abstract data using a charting tool prepared for the study. Results: Resources will be grouped by type, audience, and origin. Readability, understandability, quality, and credibility assessments will be presented in tables. Resource gaps will be identified to make recommendations for future resource development. The review will begin in March 2026, and data extraction and analysis will be completed by August 2026, with manuscript submission by October 2026. Conclusions: This paper presents the protocol for the first scoping review to systematically compile and appraise educational resources for early-stage T1D. The findings will offer a clear overview of the current resource landscape, identify gaps, highlight resources that adhere to current early-stage T1D and health literacy guidelines, and provide a foundation for future development and co-design of fit-for-purpose materials.

Aim: To explore the lived experiences of parents of children at risk of type 1 diabetes (T1D) undergoing repeated blinded continuous glucose monitoring (CGM). Method: Since 2021, children with persistent islet autoimmunity in the Environmental Determinants of Islet Autoimmunity (ENDIA) study have been invited to participate in a sub‐study involving blinded Dexcom G6 CGM. Parents with children undergoing repeated CGM participated in a semi‐structured audio call interview. Open‐ended questions captured their experiences of their child's repeated blinded CGM. Data were analysed using inductive thematic analysis. Results: Nineteen parents (18 mothers, 1 father) of children with a mean (SD) age of 7.5 (1.3) years, who had undergone a mean 5.5 (3.2) CGM assessments, were interviewed for a mean duration of 21.3 (8.0) minutes. Three main themes were identified: Challenges of CGM wear : All parents identified at least one difficult experience (e.g. pain with sensor insertion, anxiety of data loss) during CGM assessments Content and timing of feedback of CGM assessment findings : Parents described a range of experiences related to receiving feedback from health care professionals and their child's stage of T1D. Preparation for diagnosis of clinical (Stage 3) T1D and initiation of insulin treatment : Parents described feeling empowered by knowing their child's risk, allowing them to feel more prepared for progression to Stage 3 T1D. Conclusion: Despite the challenges parents face while their child undergoes CGM assessments, they reported repeated blinded CGM as an acceptable form of monitoring that provided valuable knowledge regarding their child's risk of stage 3 type 1 diabetes.

Aim: The potential implementation of early type 1 diabetes (T1D) detection pathways, encompassing autoantibody screening and longitudinal monitoring, raises important psychosocial considerations for ethical, person‐centred care. This review summarises evidence on the psychosocial impact of early T1D detection, identifying key evidence gaps and recommendations for integrating psychosocial support. Methods: A semi‐structured narrative review was conducted using PubMed‐indexed international peer‐reviewed literature, complemented by experiential insights from an interdisciplinary authorship team. Results: Broader Health screening literature emphasises that individuals' values, beliefs about chance, severity and controllability, alongside sociocultural context, shape decision making and coping. Early T1D detection introduces inherent uncertainty regarding timing and clinical progression. Despite a limited evidence base, largely focused on parents and lacking tailored person‐reported outcome measures (PROMs), studies suggest a transient increase in negative emotional responses (e.g., anxiety, depressive symptoms, distress). Individual variation appears linked to screening outcome, prior experiences with T1D and tolerance for uncertainty. Effective, stigma‐free communication and psychosocial support delivered by family‐oriented professionals can facilitate informed, autonomous decision making. Mental health specialists play a key role in developing behaviourally informed protocols for care and communication, training care teams and providing targeted support for families experiencing persistent distress. Community involvement in the design, testing and evaluation of these communication tools, models of care and development of PROMs are essential for acceptability and equity. Conclusion: Integrating psychological monitoring and care is a critical component of the early T1D detection pathway. Contextually relevant and co‐designed information, support strategies and PROMs are needed to help families make informed decisions and navigate uncertainties.

BACKGROUND Advances in understanding of type 1 diabetes (T1D) natural history have enabled screening for islet autoantibodies and the detection of pre-symptomatic (early-stage T1D) prior to clinical presentation and the need for insulin replacement therapy. As screening programs expand, increasing numbers of children are being identified with early-stage T1D creating a pressing need for relevant, accessible, evidence-based educational resources. Due to the rapidly changing paradigm of T1D care in such settings, many healthcare professionals currently lack awareness or guidance on which educational resources to recommend to families. To date, no review has systematically identified and evaluated educational resources for families navigating early-stage T1D or healthcare professionals supporting them. OBJECTIVE This scoping review aims to: (1) systematically identify and evaluate educational resources for early-stage T1D, (2) assess their readability, understandability, quality, and credibility, (3) create an inventory of resources consistent with current care and health literacy guidelines, and (4) identify resource gaps and priorities for future development. METHODS A comprehensive search of peer-reviewed and grey literature databases (MEDLINE, Google, professional organizations, advocacy groups, research consortiums, and screening programs) will be conducted to identify English-language resources (factsheets, websites, videos, infographics). Eligible resources will undergo standardised assessment using validated tools for readability, understandability, information quality, and credibility. RESULTS Expected outputs include descriptive summaries and structured appraisal findings across readability, understandability, information quality, and credibility. The review will begin in March 2026, with completion expected by August 2026. CONCLUSIONS This paper presents the protocol for the first scoping review to systematically compile and appraise educational resources for early-stage T1D. The findings will offer a clear overview of the current resource landscape, identify gaps, and provide a foundation for future development and co design of fit for purpose materials.

Aims/hypothesis: Children with early-stage (pre-symptomatic) type 1 diabetes are currently identified primarily via research-based screening programmes in Australia. Once identified, families live with the knowledge that their child has an increased chance of developing symptomatic, lifelong, insulin-requiring type 1 diabetes but have no specific clinical pathway available to them in Western Australia (WA) for accessing tailored support or education. This project aimed to co-design a new clinical pathway to address this unmet need. Methods: Experience-based co-design (EBCD) methodology was applied, comprising three phases undertaken consecutively over 12 months. Recruitment for each phase was via open invitation with voluntary participation. Phases 1 and 2 involved facilitated community conversations and focus groups conducted separately for type 1 diabetes community members and healthcare professionals (HCPs). Data from these phases were analysed using deductive and inductive content analysis to identify key categories of information and a prototype clinical pathway was developed incorporating these. For phase 3, a combined workshop was held with all stakeholders to obtain feedback on the prototype, and refine it accordingly. Results: In phase 1, 16 community members (people living with type 1 diabetes, families whose child or children had been screened for type 1 diabetes) and 36 HCPs (doctors, nurse educators, social workers, dietitians, a mental health nurse and administrative staff from Perth Children’s Hospital) participated in separate community conversations. The following three key categories were identified: (1) the need for education; (2) the need for support and strategies for managing uncertainty; and (3) the need for information on disease-modifying therapies and access to clinical trials. In phase 2, seven community members and 11 HCPs participated in separate focus groups. The following key priorities were identified: (1) the need for access to HCPs skilled in supporting patients to manage uncertainty; (2) the need for flexibility in delivery modes (telehealth/in-person); (3) the need for early referral to relevant clinical trials; and (4) the need for reliable and up-to-date resources. In phase 3, three community members and three HCPs attended a combined workshop to provide feedback on a prototype clinical pathway and their feedback was incorporated into a final version. Conclusions/interpretation: Application of EBCD methodology enabled the development of a new clinical pathway tailored to the needs of WA families with a child living with early-stage type 1 diabetes. Graphical

Despite the various traumatic events that a young person living with type 1 diabetes (T1D) may experience, little is known about the burden and manifestation of traumatic stress in this population. Though mental health outcomes have been explored generally, medical trauma-sensitive approaches to understanding these experiences remain limited. We utilised a qualitative descriptive approach to explore the impact of T1D on young people’s mental health through the paediatric medical traumatic stress model (PMTS). Young people aged 13–30 living with T1D were interviewed. These interviews were recorded, transcribed, and analysed using Reflexive Thematic Analysis. Three main themes were generated: (1) perceived sources of trauma throughout the T1D journey, (2) responses to and consequences of trauma, and (3) role of resilience throughout the T1D journey. The first and second themes elucidate the sources of traumatic stress ranging from physiological, clinical, and social experiences. Furthermore, the consequences of unaddressed trauma are observed throughout adolescence, but is most evident in the transition between adolescence and young adulthood. The final theme refers to sources of resilience for young people living with T1D and its role in mitigating the consequences of adverse trauma immediately post-diagnosis and in the long term. Application of the PMTS model to these experiences offers a novel perspective on young people’s experiences of living with T1D and enhances our understanding of trauma and traumatic stress in this population. Findings suggest that interventions focused on bolstering resilience might contribute to the prevention of long-term adverse mental health outcomes for young people living with T1D.

Background: Children and young people with type 1 diabetes (T1D) experience high rates of mental ill health and stress due to the emotional and cognitive energy required to manage their condition. Our team has codesigned Wellbeing T1D, a brief trauma‐informed online intervention for adolescents living with T1D. This 5‐week intervention will teach skills to promote problem solving, improve emotional regulation and promote helpful thinking and coping. Objectives: The aim of this project is to pilot the Wellbeing project with Australian adolescents, aged 13–17 years. The feasibility and potential effectiveness of the intervention will be evaluated. We hypothesise that the Wellbeing project will show efficacy in improving the well‐being, resilience and coping skills of adolescents with T1D. Methods: A double arm, pre–post longitudinal study design will be employed, with an intervention group and a non‐intervention group receiving treatment as usual, to determine the potential effectiveness of the intervention content and delivery. We aim to recruit approximately 40 adolescents, at least 6 months post‐T1D diagnosis, to take part in the intervention. We will measure changes in participants' level of optimism, self‐compassion and diabetes‐specific distress and resilience at three timepoints. Conclusion: This protocol outlines the first trauma‐informed intervention aimed at addressing symptoms of traumatic stress in this population. Wellbeing T1D has the potential to be used in a variety of settings (both clinical and non‐clinical) to reduce the disease burden on adolescents living with T1D and their families, improve long‐term mental health outcomes and ultimately reduce morbidity from diabetes and its other physical complications.

Background. Advanced hybrid closed‐loop (AHCL) therapy improves glycemia. However, it is not known if there is an improvement in overall outcomes with AHCL for youth with type 1 diabetes (T1D) at high risk of diabetes‐related complications. The study aimed to capture the experiences of youth with suboptimal glycemic control when commencing AHCL therapy in a clinical trial setting. Methods. This was a singlecenter substudy of a multicenter 6‐month randomized clinical trial. Youth between 12 and 25 years of age on insulin pump therapy with HbA1c > 8.5% (> 69 mmol/mol) who commenced AHCL therapy with Medtronic MiniMed™ system were invited to participate in a semistructured interview after 6 months of AHCL. Open‐ended questions were used to explore the participants’ lived experience of AHCL in improving their glucose levels and its impact on diabetes management and well‐being. The interviews were audiorecorded, transcribed, and analyzed using thematic analysis. Results. Ten youth with T1D with a mean (SD) age of 17.4 (2.9) years, diabetes duration 10.7 (4.8) years, HbA1c 10.2 (0.8)%, or 87 (9.5) mmol/mol at enrollment participated in the interview. Three main themes were identified: (1) improved glycemia despite not using closed loop to its full potential; (2) persistent diabetes burden; and (3) a need for increased psychosocial and clinical support. Although improved glycemia was noted with AHCL therapy, participants reported ongoing motivation issues and used the system suboptimally. They continued to experience distress with overall diabetes management and acknowledged the need for ongoing support from family and health professionals. Conclusion. All participants reported overall satisfaction with improved glucose levels, however, the persistent diabetes burden impacted their ability to use AHCL optimally. The need for ongoing monitoring with support and interventions to enhance psychological care remains vital for youth with suboptimal diabetes management.

Reducing carbohydrate (CHO) intake is being used as an approach to manage type 1 diabetes (T1D) in children. This study aimed to investigate the experiences and attitudes of parents of children with T1D who are reducing CHO intake to help manage blood glucose levels (BGLs). Semi-structured interviews were conducted with the parents of children with T1D for >1 year who reported implementing a low CHO approach to manage BGLs. Data were analysed using a constant comparative analysis approach. Participants (n = 14) were parents of children (6.6 ± 2.0 years) with T1D in Western Australia. All parents reported different methods of CHO restriction and all perceived that benefits outweighed challenges. Parents reported feeling less worried, had improved sleep and felt their child was safer when using a low CHO approach due to more stable BGLs. Reported challenges included: increased cost and time spent preparing food; perceived judgement from others; and child dissatisfaction with restricted food choices. Parents reported accessing information and support through social media networks. Parents reported a desire for more research into this approach. Understanding the promoters and barriers for this dietary approach may inform strategies to better engage and support families with approaches that align with current evidence while considering their concerns around safety and hyperglycaemia.