Type 1 diabetes (T1D) is a significant health challenge, affecting more than 1 million young people globally [1], with approximately 140,000 cases reported in Australia alone [2]. T1D is a progressive autoimmune condition defined by the destruction of insulin-producing beta cells in the pancreas [3]. Despite advances in care, T1D continues to be associated with significant morbidity and mortality [4,5], including acute complications such as diabetic ketoacidosis and long-term complications affecting both physical [6] and mental health [7]. Beyond these impacts, T1D imposes substantial psychosocial and economic burdens on families, the health care system, and the broader community [7,8]. Families must navigate complex treatment regimens and the psychological impact of a lifelong chronic condition. The rapid evolution of T1D care models further complicates these challenges, making it essential for both families and health care professionals to access up-to-date information that reflects these changes. Consequently, educational resources must keep pace with the evolving landscape of diabetes management to empower families with the knowledge and skills they need to effectively navigate the complexities associated with T1D.

For example, ongoing advances in the understanding of the pathophysiology of T1D have enabled the identification of individuals with presymptomatic (early-stage) T1D through screening for islet autoantibodies [9-13]. Early-stage T1D is defined by the presence of 2 or more persistent islet autoantibodies with normoglycemia (stage 1) or dysglycemia (stage 2) and precedes symptomatic stage 3, when diagnostic criteria for diabetes are met and insulin therapy becomes necessary [11,14]. T1D is often diagnosed in childhood; hence, there has been a growing international focus on screening during infancy, with Italy being the first country to mandate nationwide screening for children and adolescents aged 1 through 17 years [12,15]. Identifying individuals with early-stage T1D provides opportunities for proactive education and support, monitoring of disease progression, and timely access to clinical trials or disease-modifying therapies [16], as well as preparation for clinical onset. Early detection also opens avenues for preventing acute and long-term complications, supporting psychological readiness, and reducing risks associated with delayed diagnosis, such as diabetic ketoacidosis [16]. However, the benefits of early detection and emerging therapies are contingent upon families and youth having access to reliable, credible, and understandable information.

The ability to find, read, and use health information, along with environmental factors such as supporting policies and practices within the health system [17], are collectively known as health literacy. International health literacy guidelines [18-20] recommend that health resources use plain language; be brief and direct; and use clear headings, bullet points, and illustrations or video content. Additionally, guidelines for readability suggest a grade level between grades 6 [20] and 8 [18]. Health literacy is also affected by environmental factors and personal stressors [21]. Evidence from the broader health screening literature and a recent narrative review of psychosocial considerations for those navigating early-stage T1D demonstrates that individuals’ responses to information are shaped by their personal values, prior experiences with T1D, sociocultural context, and existing tolerance for uncertainty [22]. Parents of children with early-stage T1D commonly experience distress, anxiety, and uncertainty [23,24], particularly when faced with unfamiliar terminology, unpredictable timelines, and evolving clinical guidance. High-quality, trustworthy educational resources supported by consistent, evidence-informed communication by health care professionals are essential to supporting informed, autonomous decision-making and facilitating psychosocial adjustment for families and youth with early-stage T1D [22]. Additionally, quality patient-health care professional relationships are central to enabling families to interpret evolving evidence, navigate uncertainty, and integrate diabetes management tasks into daily life [25].

In the context of early-stage T1D—a rapidly advancing field marked by rapidly evolving knowledge and emerging therapies—both health care professionals and families need information that is accurate, current, and acknowledges the psychosocial considerations of families adjusting to the uncertainties and evolving demands of early-stage T1D [22]. Health care professionals must remain well-informed to deliver consistent, evidence-based advice and resources, and families, who increasingly seek information independently, require information that is aligned with both best practice and lived experience. To date, no review has collated and assessed educational resources currently available for families and youth navigating early-stage T1D.

In light of the identified knowledge gap, the scoping review will (1) systematically identify and document early-stage T1D resources available for youth (aged <25 years) and their families and health care professionals supporting youth and their families; (2) assess the quality, credibility, understandability, and readability of materials; (3) create an inventory of resources endorsed as meeting current care guidelines to facilitate future consultation with families and health care professionals; and (4) identify resource gaps and priorities for future development.

This scoping review will follow the JBI methodology for scoping reviews [26], structuring the review process into 6 stages, as described below. The scoping review protocol was registered on the Open Science Framework on February 12, 2026, and will be reported according to the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) checklist [27].

The primary research question of this review is: “What resources are available for youth, families, and health care professionals in understanding and navigating early-stage T1D?” Secondary research questions include: “What is the quality of existing resources?” “Who is the target audience for available resources?” and “What gaps exist in the identified resources currently available?”

Findings will be reported narratively and visualized, following PRISMA-ScR guidelines [27]. A PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) flowchart will be used to detail and collate the results of the final review. Our approach will provide a contextual framework that connects resource types, audience, health literacy, fidelity, and content gaps. Specifically, frequency counts of resources by type (eg, leaflets, websites, and videos), number of studies, population or audience (eg, health care professionals, youth, and families), and resource development location (eg, country) will be undertaken and mapped out for presentation using circular charts, bar charts, or tables as the researchers deem appropriate. Quality assessment findings will be summarized and presented in tables or using illustrations for youth, families, and health care professional audiences. Due to the variety of sources included, content analysis will be used to identify themes from the resources that speak to existing knowledge gaps. These gaps will be cross-referenced with literature on the needs expressed by youth and families managing early-stage T1D. Findings will be stratified by the intended audience (eg, family-focused versus health care professional–focused). Resources that score highly in the quality assessment measures of PEMAT, QUEST, and credibility will be included in a study-compiled inventory of resources identified as being suitable for dissemination to families with early-stage T1D.

To identify relevant resources that may not be available online, we will consult with experts in early-stage T1D clinical care and research through our established partnerships. Professional advocacy organizations, research consortiums and networks, clinical trial networks, and screening groups (see Multimedia Appendix 1) will be contacted via email or phone to ask about other relevant resources, including those that are unpublished. Suggestions and contact details of other relevant individuals or groups will be followed up. To track these activities, a table in Excel will be developed and will include details such as group, date of contact, and outcome.

This scoping review will provide the first comprehensive synthesis of educational resources available to families and youth navigating early-stage T1D. These resources will be consolidated into an accessible, online inventory for families and youth with early-stage T1D and health care professionals providing care. The need for resources and support for families navigating early-stage T1D has been identified across the globe [22,36-38]—dovetailing with the implementation of autoantibody screening and longitudinal monitoring [9-13,15]. By systematically identifying, collating, and evaluating existing resources, this review will generate an inventory of currently available resources evaluated methodically to be of high understandability, quality, and credibility. The inventory will be readily accessible, and future research will facilitate local adaptation via community feedback in Western Australia, with the intention that other jurisdictions may also use the inventory to shape their own consumer-informed resource development. Results from this scoping review will be disseminated globally via publication in a relevant peer-reviewed journal and via conference presentations. Results will also be shared with peak body organizations and advocacy groups globally (e.g. ISPAD, SWEET, and Breakthrough T1D) and locally (ANZSPED, Australian and New Zealand T1D Models of Care Community of Practice, and Perth Children’s Hospital early-stage T1D clinic), including for stakeholder education.

A major strength of this review is its inclusive and systematic methodology, with clear translational intent to enable practical use of its findings by families and youth navigating early-stage T1D and health care professionals providing their care. The search strategy spans both published and gray literature, allowing for comprehensive identification of the varied formats in which currently available early-stage T1D information is communicated. The application of multiple validated appraisal tools provides a robust assessment of readability, understandability, quality, and credibility.

Several limitations should also be acknowledged. Restricting the review to English-language resources may exclude culturally and linguistically diverse materials of relevance to non–English-speaking families and youth navigating early-stage T1D and health care professionals. However, we aim to address this by providing links, where available, in languages other than English for resources in the curated inventory. Web-based searches are subject to dynamic algorithms, meaning some resources may be missed despite rigorous search procedures. Given the rapid evolution of early-stage T1D research and clinical care pathways, identified materials may also become outdated quickly. All search terms and strategies will be made publicly available to facilitate updates over time. Finally, although quality and credibility evaluations follow established criteria, some subjectivity is inherent when appraising online educational content. Nonetheless, the review’s methodological approach is designed to yield a comprehensive and transparent synthesis of available resources, with emphasis on producing outputs that can be readily applied to real-world clinical and community contexts. In particular, the inventory will serve as a foundational asset, whereby families, youth, and clinicians can adapt or redevelop resources included in the inventory to meet local cultural, linguistic, and service needs.

This scoping review will address a critical gap by systematically identifying and methodically evaluating existing educational resources related to early-stage T1D. The findings are anticipated to provide an accessible resource for families and youth navigating early-stage T1D and their health care professionals by generating an online inventory of relevant, high-quality resources. The review will also identify gaps in currently available resources to inform priorities for future development of consistent, clear, and fit-for-purpose educational resources.