Introduction

Evidence from clinical practice and research highlights the importance of behavior change in diabetes self-management to improve health outcomes and reduce the risk for complications in type 1 diabetes (T1D) [1, 2]. However, essential self-management behaviors, like daily insulin therapy, carbohydrate counting, and blood glucose monitoring, remain complex and challenging [3]. Although maintaining euglycemia is difficult for all people living with T1D, glycated hemoglobin (A1c) levels are higher in adolescents and young adults compared to other age groups [4,5,6]. Beyond biological changes affecting insulin needs and blood glucose stability, young people with T1D face psychological and social challenges. They must cope with peer pressure, emotional balance, mental health, self-growth, and new financial responsibilities. These competing priorities can reduce motivation for self-care, often overshadowing the demands of T1D management [7, 8]. Knowledge acquisition and cognitive behavioral interventions supporting diabetes self-management education and support are most effective in achieving long-term glycemic stability [9,10,11]. While diabetes education strategies are offered through in-clinic group classes or individual counselling sessions to youth with T1D, these programs are often geographically constrained, time and resource-intensive, and do not offer sustained tailored education to patients [9, 12, 13]. This is particularly important during the transition in care, a formative period beginning around age 14 when adolescents and young adults must acquire new skills and competencies to gain autonomy and independence from caregivers, continuing through the transfer to adult care and the early years that follow [7, 14]. Given the accessibility of technology, digital approaches are potential novel care solutions that can improve self-management behaviors [15]. Grey et al. demonstrated that Internet-based psychoeducational programs (TeenCope and Managing Diabetes) improved glycemic management, self-efficacy, and quality of life in youth (aged 11–14 years) with T1D, when combining behavioral and educational components [16].

Despite the rise of mobile health technology, effective strategies to engage youth in behavior change and improve glycemic outcomes remain unclear [15]. While interventions grounded in behavior change theories are thought to be more effective [17,18,19], few studies apply these theories comprehensively or assess their impact on self-management behaviors through online education [20, 21]. This reflects both a limited use of theory and a lack of evidence on how to translate theoretical models into practical, youth-focused interventions [15, 22,23,24].

Consequently, no established design process currently exists for developing theory-based technological interventions to improve diabetes self-management. The COM-B model, a behavioral science framework, proposes that behavior is driven by three essential conditions: Capability, Opportunity, and Motivation [25]. We hypothesized that by addressing youth’s needs related to managing diabetes and designing a platform to enhance these conditions, self-management would improve. The aim of this study is to explore how an online education and support platform can help youth with T1D better manage their condition.

Methods

Study design and use of prototype

We recently developed a behavioral theory-based, self-guided web platform for adults living with T1D [20] and showed improvements in self-efficacy [26]. Further, the adapted platform for healthcare professionals (HCP) improved their confidence in treating patients with T1D [27]. Building on this work, our qualitative analysis with youth with T1D revealed distinct needs from adults, underscoring the importance of a youth-specific platform featuring quizzes, testimonials, unrestricted navigation to different modules, and a mobile-first design [28]. Based on this, we developed a prototype (Appendix I), which was used as a visual support to facilitate discussions in the present study with youth living with T1D. We conducted a qualitative study using focus group discussions involving adolescents (14–18 years), young adults (19–24 years), and HCPs, to inform the development of an educational platform that supports autonomy and independence in diabetes self-management. This age range was selected to capture diverse perspectives across the transition from pediatric to adult care, including those beginning preparation for transition, those in active transfer, and those who had recently transitioned. We aimed to (1) identify the needs of youth for an online education and support platform to help them engage in diabetes management, (2) determine the content and features required to address these needs by framing them as behavior targets using the COM-B model, and (3) integrate the emerging themes into a standardized process for designing online education and support technology tailored for youth with T1D.

Ethics approval and consent to participate

The study was approved by McGill University Research Ethics Board (#20-08-036), funded by La Société Francophone du Diabète, and follows the Consolidated criteria for Reporting Qualitative Research Checklist. In Quebec, individuals aged 14 and older can provide independent consent for care if there is no serious risk to health. Given the low-risk nature of participation, a single focus group discussion, youth aged 14 and older were deemed capable of providing informed consent. To ensure understanding, each participant completed a phone call with the research team prior to participation, during which study details were reviewed and comprehension confirmed. All participants provided consent on their own behalf. The study was conducted in accordance with the principles of the Declaration of Helsinki for research involving humans and/or human data.

Participant recruitment

We recruited adolescents and young adults living with T1D for at least one year, who could understand and speak French, from the BETTER registry, a Canadian registry of individuals with T1D (https://type1better.com/en) [29]. Lack of access to an internet-connected device for the teleconference discussions on Microsoft Teams was an exclusion criterion, though no participants were excluded for this reason. A convenience sampling method was used to identify individuals, who were then invited to participate by email. Registered dietitians and registered nurses were recruited through social media and were eligible to participate if they (1) were member of a regulatory body in the province of Quebec and (2) regularly worked with people living with T1D aged between 14 and 24 years old.

Procedures

Once eligibility was confirmed, participants provided written consent, baseline characteristics (adolescents and young adults participants: age, gender, ethnicity, diabetes duration, insulin administration modality, use of continuous glucose monitors; HCP participants: years of practice, profession and healthcare sector, and patient population), and their availabilities for group discussions. These discussions were centered around tangible examples of content and features of education and support technology, primarily, a prototype of the online education and support platform previously discussed and adapted through semi-structured interviews conducted with youth, as detailed by Xie et al. [28].

Prior to attending the focus group discussions, participants were provided with (1) suggested topics of diabetes self-management for youth, (2) access to the preliminary prototype of the online education and support platform in development (with included education modules, case studies, discussion forum, news blogs, and progression bars), and (3) a video explaining the content and navigation on the prototype (Appendix I). Youth and HCPs participated separately, in small group discussions of 3–5 participants. At the start of each focus group, the interviewer and observer were introduced as researchers conducting a study to guide the development of an online education and support platform for youth with T1D. Participants were informed that the goal of the discussion was to better understand their needs, preferences, and experiences to inform the platform’s design. Four topics were discussed following a discussion guide: (1) youth’s needs for technology to support engagement in diabetes management, (2) Feedback on the features presented in the prototype, (3) Feedback on the suggested topics related to diabetes management, and (4) intended use of an online education and support platform (Appendix II). AH conducted all the focus group interviews, with the same observer, ARF. Each focus group discussion was conducted online, on Microsoft Teams, and lasted from 60 to 90 min. Participants received a $30 CAD gift card as compensation.

Data analysis

Discussions were transcribed (by AH and verified by SH) from video-recordings, and nonverbal behaviors were analyzed, to provide context for the verbatim, along with field notes. Verbatim was open-coded to create a codebook by two researchers (AH and SH) independently, using NVivo software (QSR International, Melbourne, Australia). The percentage of agreed-upon codes, independently identified, was 93%. Each code was then discussed until mutual agreement was reached by both researchers. A combined inductive and deductive thematic analysis approach was employed for qualitative analysis of the codes. Inductive analysis was utilized to outline the needs of youth in self-management of T1D, while deductive analysis was used to anchor the content and features within the COM-B model to target these needs. All the analyses were performed in French. Codes and quotes were translated in English using a forward-backward translation process by two bilingual researchers (AH and ARF) for the purpose of the publication.

Results

A total of 34 participants were recruited, but only 30 attended a focus group discussion. A total of 8 focus group discussions involving youth (n = 21) and HCP (n = 9) were conducted, and data saturation was achieved. The non-participation of two youth and one HCP was due to time conflicts, and one youth stopped corresponding, after providing consent. Participants’ characteristics are outlined in Table 1.

Table 1 Characteristics of participants presented as median ± interquartile range [IQR] or % (n)
Full size table

Identified needs of youth for technology to support engagement in diabetes self-management

Five key categories emerged, outlining the needs of youth to enhance diabetes management: (1) personalizing education, (2) deepening understanding of diabetes, (3) building community connection, (4) fostering collaborative learning, and (5) building confidence. Both youth and HCPs discussed these needs, although each placed different emphasis on specific ones.

Personalizing education was the most discussed theme among both youth and HCPs. This core category refers to the need for both self-directed learning (the ability to access all content at one’s own pace) and tailored content (practical and useful, personalized to youth and users’ preferences, succinct). “It’s just that sometimes when you go to your appointment, you’re not necessarily ready to absorb a lot of information… and then when you get home, you’re like, what did they tell me? … Whereas now, you can do it at your own pace.” Woman, 24 years old.

“… (the platform should suggest) content that aligns with our interests but also proposes popular and recent information” - Girl, 14 years old.

Youth placed emphasis on deepening understanding of diabetes, which encompasses developing the ability to explain T1D to others and providing access to resources to correct misconceptions, particularly in the context of T1D-related stigma. This need was closely mentioned with building community connection i.e., emotional support, and exchanging with other youth with T1D. “I thought I couldn’t have children; I had cancelled that (idea)… You know, just undoing the stigmas that we are told.” - Woman, 24 years old.

“You feel less bad (when reading) than when asking the question. You know that if it’s there, you’re not that stupid because other people are asking the same question.” - Man, 24 years old.

“You talk to a lot of adults but you’re like, how much can you relate to what I’m going through? We don’t necessarily have the same life, so talking to people who have diabetes, who may have the same problems as you, you’re like, yeah okay, you feel less alone in this process.” - Man, 24 years old.

On the other hand, HCP emphasized the need to building confidence to promote youths’ autonomy in diabetes management in the workplace and gaining independence from parents. This referred to improving youths’ ability to make decisions related to diabetes management, and especially during their transition in care and into adulthood. “The platform should explain how to cut the cord with the parent to take care of (diabetes)…I think that’s the most important point.” - RN, 25 years of experience in adult care.

Furthermore, HCPs raised the opportunity of such a platform to foster collaborative learning, to inform youth about sensitive subjects that they would not be likely to bring up during medical appointments. They highlighted the opportunity to rectify false beliefs with regards to pregnancy and sexual health. Young people expressed this need differently, by discussing their desire to learn more, and in an anonymous manner, about “taboo” topics where they fear judgment and stigmatization from their healthcare team. “Tattoos, piercings, alcohol, drugs, sexual relationships … I think it’s really important (to bring up) … you won’t necessarily be able to openly ask your doctor or your parents.” - Woman, 20 years old. “And I think emphasizing how to manage alcohol, really explaining it well because when I met with my nutritionist, I was looked at a bit, you know, and I felt judged.” - Woman, 24 years old.

“I think it could be important (to ask questions anonymously on the online platform) for people who feel less comfortable being able to openly say or ask a question about something.” - Boy, 15 years old.

Applying the COM-B model in designing online education and support technology

The identified needs from this analysis were conceptualized as target behaviors within the COM-B model, which posits that behavior is influenced by Capability, Opportunity, and Motivation. Deductive thematic analysis was used to map the features and content topics of interest expressed by youth, to these three components.

Personalizing education

The main feature to provide capacity for personalized and self-paced education is simple and unrestricted access to information, whether it is through a search bar or intuitive categorization of content. The opportunity for personalized education can be created through features that would promote topic discovery (i.e., highlighted, or seasonal content, fun fact) or quickly answer a specific question (succinct/ “question and answers” format, bullet points, infographics). Personalizing topics, creating reminders, and gamification features are all means to create motivation for personalized education.

Understanding diabetes

Giving youth access to content that demystifies false ideas, and pre-conceived notions can create capacity for understanding diabetes. Additionally, making such content available in a format that can be shared (e.g., Instagram posts) is an opportunity to increase understanding of diabetes and reduce the perceived stigma in their social environment. Finally, fostering the ability to articulate T1D to oneself and others, along with providing the necessary tools and resources, can serve as motivation for utilizing such technology. This can facilitate raising awareness about T1D, enhancing understanding of the condition, and potentially mitigating stigma associated with it.

Building community connection

Access to testimonials of peer-related experiences and participation in discussion forums not only provides capacity for peer-support but also offers the opportunity for engaging in it actively. Additionally, including content on topics such as mental distress, stress management, and self-esteem can serve as motivation for youth to offer peer-support. By addressing these areas, young individuals may feel more empowered and inclined to share their own experiences and offer support to their peers navigating similar challenges.

Fostering collaborative learning

To provide capacity for collaborative learning among youth and HCPs, the platform should prioritize confidentiality, particularly when addressing sensitive topics such as drug use, alcohol consumption, gender, and sexuality. Integrating the platform into healthcare systems, with restricted HCP access, presents an opportunity to improve communication between HCPs and youth. HCPs could guide youth to specific platform topics, while youth could indicate areas of interest or suggest discussions for further exploration with their healthcare team. Ensuring that all platform information is peer-reviewed and secure is crucial to motivate both HCPs and youth to utilize such technology as a complement to HCP teaching.

Building confidence

Finally, addressing topics related to daily living and diabetes management is crucial to create capacity for confidence building in youth. Including content on financial management, insurance navigation, transitioning between healthcare providers, independent living skills, recommended check-ups, and medical follow-ups in educational technology is essential. Integrating case studies and real-life scenarios can provide opportunities for practical application of these learnings, promoting autonomy. Moreover, offering feedback, encouragement, setting goals, and visualizing progress can further enhance youth’s motivation to increase their autonomy in diabetes self-management.

Design axes to guide the development of online education and support technology

The identified topics and features of interest were organized into four overarching design axes to guide the development of online education and support technology for youth with T1D. These axes illustrate that online educational technology should provide: Self-paced Learning, Youth Empowerment, Confidential Access, and management of Diabetes in daily life with practical application (Fig. 1). These four design axes were derived directly from the needs highlighted by youth with T1D during the needs assessment. Self-paced Learning emerged from participants’ desire for flexible access to information, and personalized educational content they could revisit as needed. Youth Empowerment reflects their expressed need to better understand their condition while having a space to connect with peers who share similar experiences. Confidential Access was shaped by concerns around stigma, privacy, and wanting a safe environment where they could learn, ask questions, and engage without judgment. Finally, Management of Diabetes in Daily Life was grounded in the need for concrete, practical tools that translate knowledge into day-to-day decision-making and help build confidence in real-world situations.

Fig. 1
Fig. 1
Full size image

Design axes for designing online education and support technology to address the needs of youth in T1D self-management

Discussion

This study aimed to explore how an online education and support platform can help adolescents and young adults with T1D better manage their condition.

Needs identified by youth living with T1D to enhance self-management of T1D through an online platform for education and support include personalizing education, deepening understanding of diabetes, building community connection, fostering collaborative learning, and building confidence. Each of these needs was centered as a behavioral target using the COM-B model. Content and features were identified to address these needs and were organized into four overarching design axes. These axes illustrate that online educational technology should provide: Self-paced Learning, Youth Empowerment, Confidential Access to bridge sensitive topic communication gap between youth and healthcare professionals, and management of Diabetes in daily life with practical application.

A narrative review published in 2019 highlights the general focus of education technology on health rather than specific conditions, leading to a lack of understanding regarding design features and content for promoting behavior change [30]. In the absence of an educational technology design framework tailored specifically to youth with T1D, our results highlighted four design axes, rooted in behavior change theory, to provide guidance for developing online education and support technology to improve their diabetes management.

Participants described the need for personalized education as unrestricted access to content that adapts according to users’ preferences and needs, and more importantly, content to which youth can relate. Unlocking all platform content would allow users to learn at their own pace and choose topics of interest rather than following a fixed sequence. Granting learners this autonomy may enhance engagement and learning outcomes, as greater control over one’s learning has been shown to improve overall learning [31]. In another learning context, a recent study recommended promoting self-paced learning in elementary classrooms, where students showed significantly higher post-test scores and reported positive learning experiences [32]. Although in a different setting, these findings are relevant to youth with T1D, as both groups are developing autonomy and benefit from having control over their own learning process. Self-paced learning was associated with better learning efficacy and self-directed learning; i.e., taking more initiatives to learn [32]. Online education should continuously adapt and personalize to users’ interests and needs rather than being locked in a one-size-fits all approach [33]. This may explain the frustration youth expressed during discussions towards restricted and locked content, as they preferred having unrestricted access to topics that align with their own interests and learning preferences.

Moreover, consistent with our findings, proposing HCP-validated content is an important strategy to enhance the credibility and uptake of information. The systematic review and meta-analysis by Jiang et al. (2019) examined 16 studies evaluating the effectiveness of self-efficacy-focused education in people with diabetes. Across 1,745 participants, interventions that included goal setting, peer modeling, skills practice, and particularly persuasion by HCPs through education, encouragement, and feedback, were associated with improved A1c, diabetes self-efficacy, self-management behaviors, and knowledge [34]. The authors highlighted that persuasion by HCP was a commonly used and effective strategy to promote engagement and learning [34]. This supports our finding that having educational content reviewed and validated by HCPs can increase trust in the information and ultimately enhance learning outcomes.

Furthermore, observing others’ experiences can help promote confidence to perform similar actions. Models can show skills for a given circumstance, and context-based advice can be useful to integrate knowledge [35]. This confirms the importance of content that is contextualized through storytelling and case studies, to increase learning.

Gamification can be used to maintain engagement with the platform through quizzes, indication of progress, goal specification and feedback, immersing users in a story, and social-based gamification [36]. These were all mentioned in the focus group discussions. However, although gamification is well documented in the literature as a learning strategy to engage students and maintain their motivation [37], special attention needs to be given to audiovisual characteristics to prevent “child-like” visuals and features, as maintaining a formal presentation was mentioned by participants to be important.

An important consideration is the societal constructs and peer influences present in this age group that shape how youth with T1D experience and manage their condition. Adolescents tend to prioritize fitting into their social environment over health outcomes [38], and stigma from peers, family, and the broader public, often expressed through misunderstanding, judgment, or blame, is particularly prevalent in this age group [39]. Youth in our study emphasized wanting to be better equipped to explain diabetes to others, and to have credible, shareable resources to help correct misconceptions. In this context, educational tools within the platform are not solely for youth’s internal learning but are also designed to help them communicate about diabetes with their social circles. Access to HCP-validated, myth-debunking content and personal narratives that can be shared on social media or within discussion forums may empower youth to counter stereotypes, foster understanding among peers without diabetes, and build a sense of community and peer support among those living with the condition [40, 41].

Looking at the literature, several studies emphasize the need to bridge the gap in risky behaviors during adolescence in youth with T1D [42,43,44,45,46,47]. The physical and emotional growth experienced by these youth increase their risk-taking behaviors such as unprotected sex, alcohol abuse, illicit drug and tobacco use, and disordered eating [42,43,44]. There is a need for education development to appropriately communicate such information and provide advice on these topics to ensure their safety, all while recognizing the need for privacy and confidentiality [45, 48]. This is concordant with HCPs highlighting, during focus group discussions, their need for tools to complement the teaching they provide to youth. An online education platform could be an opportunity to relay “taboo” content, that is often overlooked during medical appointments as youth feel reluctant to bring up behaviors or if they do not follow “guidelines and recommendations”, even more so with personal or sensitive topics [46, 47]. Technology interventions can thus protect youths’ dignity and identity by providing confidential access to peer-reviewed topics and reliable information.

Youths’ autonomy, i.e., their ability to make management decisions, is essential to their self-management and can be developed through training on diabetes care and repetition of behaviors [49]. Content needs to be drawn from the different aspects of their daily lives to increase cognitive retention of information and favor behavior repetition, thus increasing their psychological capabilities for diabetes management behaviors [49]. Thus, providing personalized feedback and scenarios to youth could help them anchor learning in their daily diabetes management.

Comparison of youth and HCP perspectives

For a comprehensive understanding of youths’ needs in diabetes management, it was important to include both HCP and youths’ perspectives, as both groups may have divergent but complementary opinions. A Delphi study evaluated consensus between patients and HCPs on the needs of patients with T1D during the transition from adolescence to adulthood, and there were significant differences among stakeholders [50]. Opinions diverged on the need to clarify disease inheritance and misconceptions to avoid unnecessary stress and fear; these aspects were considered more important by HCPs than by patients. Similarly, primary caregivers perceived external and internal support needs that were not recognized by youth, such as the need to provide employment counselling, psychological consultation, stress management strategies and coping skills, as well as emotional distress assessment [50]. Similar observations were noted between youth and HCP participants in our group discussions, where emphasis was placed differently by youth and HCPs. HCPs focused on promoting workplace autonomy and independence from parents, while youth emphasized the need for greater understanding of diabetes and community building.

This further aligned well with adolescence, a time when youth struggle to develop their independence and forge their personal and social identity [51].

Strengths and limitations

The focus group discussions were comprised of 3 to 5 participants, which is lower than the typical 5–10 participants found in the literature. However, smaller group discussions allowed for capturing specific opinions and grasping a greater level of detail to develop this novel framework. Smaller groups provided more opportunities to initiate discussions with all members and further engage them, especially younger participants.

The inclusion of participants aged 14 to 24 years represents a limitation due to the wide variation in developmental priorities, life contexts, and levels of independence within this age range. However, this diversity was intentional to capture a comprehensive view of the transition from pediatric to adult care, encompassing those beginning preparation, actively transferring, and recently transitioned to adult care.

Self-selection bias may have limited the generalizability of the results, as participants who had previously agreed to be contacted for research projects were conveniently sampled from the BETTER registry. Moreover, most participants were Caucasian, which adds to the lack of generalizability. Interviewer bias was minimized as the same interviewer conducted all interviews and followed a structured guide. To increase rigor, transcription and translation of the interviews were independently verified by two researchers to ensure the accuracy and consistency in coding.

Conclusion

Key design axes, anchored in behavior change theory, were proposed to develop an education and support technology that could meet youth’s needs in T1D management through self-paced learning, youth empowerment, confidential access, and management of diabetes in daily life. A platform built around these axes could enhance diabetes self-management behaviors in adolescents and young adults, potentially leading to better glycemic and health outcomes and increased self-efficacy in managing their condition.