Co-Designing Peer Support Interventions for Adolescents with Type 1 Diabetes and Their Caregivers: A Novel Integration of Community-Based Participatory Research and Human-Centred Design Thinking

Abstract

Introduction

Despite technological advances, managing type 1 diabetes (T1D) and achieving a high quality of life remain challenging for adolescents. Their caregivers also experience anxiety, stress, and burnout from management responsibilities. Peer support is an approach to help alleviate these challenges, yet most interventions are not co-designed with lived experience and may not be culturally relevant or aligned with patient or caregiver priorities. This paper describes the application of human-centred design (HCD) and community-based participatory research (CBPR) to co-design peer support intervention prototypes for adolescents and young adults (AYAs) with T1D and their caregivers.

Methods

The project unfolded in three stages: (1) empathize and define – AYAs with T1D and their caregivers created digital stories to share first-person narratives; (2) ideate – a community event showcased the digital stories to diverse diabetes shareholders to generate and prioritize ideas for peer support interventions; (3) prototype – a Hackathon brought together AYAs with T1D and caregivers to co-design peer support solutions based on priority ideas.

Results

Seven AYAs and four caregiver digital stories were produced in stage 1. In stage 2, 52 unique ideas were generated at the community event and refined into six Hackathon challenge statements. In stage 3, six peer support prototypes were developed during the Hackathon, with the winning designs focusing on addressing diabetes-related stigma in schools and supporting caregivers of newly diagnosed youth.

Conclusion

Integrating CBPR and HCD, alongside innovative co-design methods, can effectively centre lived experience to generate actionable, community-informed peer support prototypes for adolescents with T1D and their caregivers.

Introduction

Since the discovery of insulin over 100 years ago, innovations in diabetes therapeutics, including continuous glucose monitoring systems, automated insulin delivery systems, smart pens, artificial intelligence-powered closed-loop solutions, and other advanced technologies and pharmaceuticals, have revolutionized the management of type 1 diabetes (T1D) [1–3]. Despite these advancements, diabetes self-management and achieving a high quality of life remain challenging, particularly for adolescents with T1D, who often fall short of glycaemic targets [4–7]. Adolescence is a complex period for individuals, and it can be especially challenging for those living with T1D. In addition to the psychological, physiological, and hormonal developments associated with puberty, adolescents living with T1D must also balance managing their T1D with meaningful experiences such as education, employment, extracurricular activities, and relationships [8–12]. These early life experiences are foundational for transitioning to a thriving and healthy adulthood, lifelong management of T1D, and self-efficacy [13, 14].

The burden of managing T1D also affects caregivers, who are vital in supporting the mental and physical well-being of adolescents with T1D [15, 16]. Caregivers often face anxiety, stress, and burnout due to continuous monitoring and disease management responsibilities, which can negatively impact their health, well-being, and overall family functioning [17–22]. Furthermore, health disparities and barriers among racialized and marginalized communities associated with the social determinants of health, such as childhood environment, access to safe and stable housing, financial resources, health benefits, social resources, community support, and healthcare access, can all exacerbate the challenges of managing T1D [23–26]. The lack of race-based data in Canada contributes to a gap in knowledge about racial disparities, especially among adolescents with T1D and their families [27, 28]. Considering these complex individual and social factors, shifting towards person-centred approaches that consider the unique social identities of adolescents and their caregivers is highly important.

Peer support refers to a unique type of support provided by social connections and relationships between people in similar situations, often with similar experiences [29]. In healthcare, peer support can be applied in a wide variety of contexts, including “linking people with a chronic condition, such as diabetes, to share knowledge and experiences” [30]. Evidence suggests that peer support for those living with T1D can improve glycaemic control, self-efficacy, and mental health, while addressing health disparities and improving diabetes-related health outcomes [30–33]. Few peer support interventions for T1D have been co-designed by people with T1D or by their caregivers [32–34]. Therefore, diverse representation and intentional integration of experiential knowledge have been lacking, with interventions being misaligned with adolescent needs such as autonomy and competence, not utilizing the “correct peers,” or selecting an ineffective form of support (emotional vs. instrumental) [30, 34–40].

This study aimed to engage adolescents and young adults (AYAs) living with T1D, caregivers of adolescents living with T1D, and diabetes advocacy and service-providing organization partners in co-designing culturally inclusive (recognizes, values, and integrates diverse cultural backgrounds [41]) and equitable peer support interventions for adolescents with T1D and their caregivers. This paper describes the application of human-centred design (HCD) thinking and community-based participatory research (CBPR) to co-design prototypes for peer support interventions that closely align with community needs and values. Specifically, our work explores whether an integrated HCD and CBPR co-design approach can be leveraged to develop equitable, accessible, and culturally inclusive peer support intervention prototypes, while simultaneously enhancing capacity for meaningful patient-oriented research within clinical contexts such as T1D.

Methods

Study Design

This study integrates CBPR and HCD thinking approaches throughout our work. CBPR requires meaningful community involvement and a flexible, iterative process that integrates academic and community-based knowledge throughout the research [42, 43]. Core elements of the process included being community-driven, mutually respectful, developing trust, empowering participants, having a social-action orientation, promoting accountability, fostering ownership, and developing capacity among community partners [44, 45]. The CBPR approach aligns studies with community needs and values, enabling people with lived experience to determine meaningful outcome measures and research methods [46]. HCD, on the other hand, is a creative approach to problem-solving that embeds end-users as equal partners contributing to co-design and decision-making processes within the discovery, ideation, prototyping, and testing stages to ensure that developed solutions are more responsive to user needs [47–50]. Integrating HCD within CBPR projects is a novel yet valuable approach to addressing complex community challenges holistically from conception and methods to findings and solutions [41, 44, 51]. By prioritizing the needs and perspectives of end-users, this approach fosters close collaboration between end-users and researchers through continuous feedback and guidance throughout all stages of the research project [47, 50, 52]. The reciprocal dialogue and co-creation generate more effective, innovative, and sustainable outcomes, products, and solutions compared to other traditional research methods [47, 50, 52, 53].

Our project integrated HCD with CBPR under the guidance of the Design Team over three sequential stages using Stanford University’s HCD framework [54, 55]: (1) empathize and define using digital storytelling, (2) ideate using a Community Event, and (3) prototype using a Hackathon. While the Stanford University HCD design framework incorporates a testing phase, implementation of this phase was outside the scope of the current study. However, the use of the framework facilitated the development of prototypes that are well positioned for evaluation and testing in subsequent studies.

Study Setting

The study took place at Trillium Health Partners (THP), a large, academically affiliated, community-based hospital in the Peel Region, Ontario, that provides services to children, adolescents, youth, and adults T1D. Peel Region has approximately 1.38 million residents and is considered one of the most diverse communities in Canada, with 69% of its population identifying as belonging to a racialized group [56, 57]. Therefore, this region is an ideal setting for developing innovative approaches that could potentially be replicated in other locales across Canada. The paediatric diabetes clinic at THP supports approximately 300 adolescents with T1D per year and is one of 35 provincially funded paediatric diabetes centres that comprise the Ontario Paediatric Diabetes Network.

Community-Based Design Team

Our Design Team consisted of three researchers, two peer research assistants (PRAs), and community members consisting of three AYAs with T1D, all who had been living with T1D for >5 years, five caregivers (mothers) of adolescents, and three paediatric diabetes healthcare providers from THP. PRAs were AYAs with lived experience of T1D who were formally recruited and hired by THP to join the research team. The PRA role was novel as it only required lived experience with T1D, irrespective of prior research knowledge, to join the project as formal researchers. All PRAs received formal training from project researchers on research methods, ethical conduct while conducting research, and relevant data analysis training. PRAs not only were a part of the Design Team but also had an active role in executing study activities, including project planning, event organization, data collection, data analysis, and knowledge exchange.

The Design Team was responsible for project governance, identifying project priorities, planning project activities, and ensuring that lived experience guided all aspects of the project. This aligned with a key tenet of CBPR: the creation of a collaborative, equitable, and supportive research and knowledge dissemination environment, where people with lived experience contributed their skills and expertise, and participated in decision-making processes [58]. The Design Team met virtually every month over the 2-year project, under the framework of co-designed terms of reference, and members received an honorarium of CAD 25/h for their contributions.

Participant Recruitment and Eligibility

Participants for each stage of the project were invited through flyers distributed within the paediatric diabetes clinic at THP, via email lists of community partners and by word of mouth. A purposive sampling approach was taken to ensure representation from diverse backgrounds [59]. All participants within each stage were provided honoraria of CAD 25/h for their time in accordance with CIHR SPOR Guidelines [60, 61].

Our project consisted of three stages, as shown in Figure 1. Participants for each stage of the project met the following eligibility criteria: (1) AYA (age 14–24) with T1D who received services from the paediatric diabetes clinic at THP, or caregivers (primary support for an adolescent with T1D, including parents, grandparents, older siblings, or extended families, who have had involvement with the paediatric diabetes clinic at THP in the past year), (2) comfortable reading, writing, and speaking English, and (3) able to commit meaningfully to the project activity/stage they were participating in. Diabetes clinicians, community partners, and diabetes researchers were also invited to the community event in stage 2. Participants were eligible to take part in multiple stages of the project if they met the corresponding eligibility criteria. As a result, approximately 3% of participants in stage 2 had also participated in stage 1, and about 30% of participants in stage 3 had previously participated in stage 2.

Fig. 1.

Project stages.

Stage 1: Empathize and Define Using Digital Storytelling

The purpose of this stage was to build empathy and understand the experiences of adolescents with T1D and their caregivers and to begin exploring peer support needs and priorities for diabetes management. We did this by engaging with AYAs with T1D and caregivers in workshops to create digital stories. Digital stories are arts-based first-person narratives that combine stories, photos, drawings, videos, and music to tell a 2- to 4-min story, and can be used to communicate lived experience perspectives in a video format [62–64]. In contrast to testimonial videos, where the camera is focused on the speaker, digital stories enable participant storytellers to create voiceover narratives accompanied by sounds, music, and selected images (e.g., photos, illustrations, or drawings) to communicate their lived experiences, often co-created or prompted by group workshop environments [64]. Digital stories are being increasingly used in healthcare for research, education, community advocacy, and to improve health outcomes [46, 65–70]. This participatory, group-based approach helped define opportunities for peer support through the sharing of personal stories and reflections [62, 69, 71].

The digital storytelling process involved six 2-h Zoom [72] workshops led by two highly experienced facilitators and filmmakers from StoryCenter Canada [73], a non-profit, community-engaged arts organization with expertise in conducting workshops to produce digital stories. The workshops were facilitated separately for AYAs and caregivers to ensure participants felt comfortable sharing their ideas and experiences. Following the Seven Step digital storytelling process (see online suppl. material 1; for all online suppl. material, see https://doi.org/10.1159/000551646), involving storytelling circles and guided discussions, participants were asked to “Tell us a story about your experiences as an adolescent with T1D trying to achieve health targets,” or “Tell me about your experiences as a caregiver trying to support an adolescent with T1D with these targets.” Through the digital storytelling workshops and 1:1 meetings with filmmaker facilitators, participants were guided to create their own 2- to 4-min digital stories to showcase their narratives.

All participants provided informed consent to participate in the digital storytelling workshops, and an ongoing consent process was followed for continued participation and dissemination of digital stories. For all participants under the age of 18, guardian consent was also obtained prior to participation.

Following production, the digital stories were viewed by the Design Team, and through a guided discussion, common themes and points of reflection were collaboratively identified. These were then used to co-design the next stage, including planning the event agenda, selecting the panellists, and finalizing the design prompts, which honour and further expand upon the digital stories.

Stage 2: Ideate

Following digital story production, the Design Team organized and held a community event with AYAs with T1D, caregivers of adolescents with T1D, diabetes healthcare providers, representatives from diabetes service-providing organizations, and diabetes researchers. Community events foster collaboration and two-way exchange of knowledge between knowledge producers, mobilizers, and end-users [74]. They can be used to develop relevant and effective research practices to improve health outcomes [74–76]. In the context of our study, the community event was an opportunity to brainstorm priorities for diabetes management support that could be addressed through peer support interventions.

The event included (1) a presentation from the study team about the project’s objectives and progress; (2) viewing and reflecting on the digital stories; (3) a 4-member panel discussion with an AYA with T1D, a caregiver, a community partner representative from the Diabetes Hope Foundation [77], and a THP diabetes healthcare provider centring the digital stories, and (4) a 25/10 crowdsourcing activity to generate and prioritize actionable ideas for peer support interventions. The 25/10 crowdsourcing method was developed by Henri Lipmanowicz and Keith McCandless as a method to rapidly generate bold and actionable ideas within a 30-min interactive activity, while ensuring that everyone has an equal opportunity to contribute ideas democratically [78]. The 25/10 crowdsourcing method can be used with groups ranging in size from 10 to 300 people and has been used in a wide variety of contexts, including to develop a nursing professional practice model, to generate ideas about training activities for an Indigenous system navigator intervention for women receiving pregnancy care, and to establish priorities for Indigenous Youth Mentorship Programs [79–81].

During the 25/10 activity, attendees had 15 min to write down their ideas about the following statement: “Thinking of what peer support means to you, what idea do you have to include/introduce peer support for adolescents with T1D and their caregivers?” The ideas generated by all attendees were randomly circulated 5 times, for a total of 5 scoring rounds. Each round, attendees read the ideas generated by other participants and rated the idea on a scale of 1–5 (1 = not highly applicable or actionable, and 5 = highly applicable and relevant). After the 5 scoring rounds of passing and rating the ideas, the scores were added together out of 25. The top-scoring ideas (score >21) were then identified.

Stage 3: Prototype – Hackathon

The purpose of this stage was to develop prototypes for interventions and programmes that could achieve the top ideas developed during stage 2. We accomplished this by conducting a hybrid (virtual and in-person) Hackathon. A Hackathon is a brief competition that assigns challenge statements (specific problems) to interdisciplinary teams to accelerate innovation, solve problem, and develop prototypes to pitch to a panel of judges [82]. Hackathons have become increasingly popular for fostering the rapid generation of innovative solutions across a broad range of multidisciplinary contexts [83, 84]. In healthcare, they have been utilized to address challenges related to the COVID-19 pandemic across various regions of the world and to aid in the redesign of healthcare systems [85]. Moreover, Hackathons are widely considered more cost- and time-efficient than traditional digital product development strategies, and thus suitable for use within research projects [83, 85].

For our Hackathon, we refined the six top-scoring ideas from the community event into five challenge statements with three focused on adolescents with T1D, and two focused on caregivers. We then recruited adolescents with T1D and their caregivers and assigned them to teams of a maximum of six participants. To promote effective teamwork, collaboration, and safe spaces, we encouraged individuals to apply with their friends. We also asked applicants to indicate if they preferred to work with specific people to ensure they could be assigned to the same team. We recruited five mentors with diverse personal and/or professional T1D experiences to support each Hackathon team individually. An expression of interest was circulated for mentor recruitment and selection, and those interested were asked to speak about their experience with youth, leadership, and the diabetes community. Mentors were also asked to select one or more of the five challenge statements to support based on their expertise and lived experiences, and this allowed the intersectional identities of the final mentors that were recruited to be represented within their chosen and assigned challenge statement. The range of mentor experiences helped support both collaborative dialogue and solution ideation among each group, while creating safe spaces within the virtual collaborative environment. Mentors were also individually connected to the research team for ongoing support and guidance as they mentored their assigned teams.

The Hackathon was launched through a virtual event, during which the methodology was explained to participants, teams were created, and mentors were introduced. Participants were also briefed on their tasks, which included using the assigned worksheets produced by the Design Team (see online suppl. material 2) to guide prototype development and a 10-min pitch presentation in response to their assigned challenge statement. Participants were given 10 days to work on their prototype. The Hackathon concluded with an in-person event, where each team pitched their solution to a panel of four judges, and a winner and a runner-up were selected. The four judges were carefully selected based on their T1D-related expertise, lived experiences with T1D, and prior community-based research experience. As such, the judging panel included those with experience developing and evaluating diabetes programming for youth, diabetes researchers, and young adults living with T1D. All judges were briefed on and evaluated the Hackathon pitch presentations using a detailed scoring rubric developed by the Design Team (online suppl. material 3: Judges Scoring Rubric).

Demographic Survey

To describe participants as a group, at the conclusion of each stage, participants were sent an optional anonymous demographic survey to complete. The survey captured key demographic information including participant role (AYA, caregiver, etc.), age, gender, and ethnicity, among others.

Results

Stage 1: Empathize and Define Using Digital Storytelling

A total of seven AYAs with T1D and four caregivers of adolescents with T1D participated in the digital storytelling workshops and created digital stories. Of the six AYA participants who completed the demographic survey, all identified as women and were single. Of these, 50% (3/6) identified as mixed heritage, 33% (2/6) identified as South Asian, and 17% (1/6) chose not to answer. Of the respondents, 83% (5/6) were between the ages of 14 and 19, and 17% (1/6) were between the ages of 20 and 24. Of the three caregiver participants who completed the demographic survey, all identified as women and were married or in a domestic partnership. Of these, 67% (2/3) were identified as South Asian, while 33% (1/3) were identified as White, and all participants were between the ages of 45 and 54.

While each story was unique, as shown in Table 1, they collectively highlighted common challenges and experiences. For example, in the AYA group, there were commonalities in the recollection of missed diagnosis of T1D as discussed by Untitled, Just Another Normal Day, and The Emergent Patient, as well as in navigating diabetes management and relationships with families as friends, as discussed by My Diabetes Burnout Journey, How Diabetes Affected Me, and In Control. In contrast, in the caregiver group, many storytellers shared their fears, grief, and concerns around what diabetes meant for their children, especially in the digital stories of Strength and February 22nd, 2019, while also discussing their own journeys in learning and becoming confident in supporting their children, such as in A Journey to T1D, Done Crying, and Strength.

Table 1.

AYA and Caregiver Digital Stories

AYA with T1D

Untitled shares the storyteller’s early experiences of misdiagnosis and the emotional toll of feeling unsupported during their T1D journey. Through visuals of hospital settings, airport scenes, and video clips of glucose testing, along with uplifting music and narration, the story demonstrates the storyteller’s resilience against these challenges, and finding strength, growth, and self-awareness

Just Another Normal Day recounts the experiences of a missed diagnosis during what initially seemed like an ordinary day. Through visuals of food, childhood photos, and hospital settings, the story shows the emotional shift from confusion to clarity, as the storyteller grew their confidence to manage their condition and regain control over their life

My Diabetes Burnout Journey explores the ups and downs of managing T1D while transitioning to university life. The storyteller reflects on burnout, isolation, and leaning on family, especially their mother, for support. Through childhood images, graduation photos, and visuals of exercise and self-care, the storyteller helps us appreciate the challenges of maintaining balance and staying on top of diabetes management while navigating their busy university schedule and social commitments

How Diabetes Affected Me focuses on navigating a childhood with diabetes, particularly in social settings. The storyteller discusses managing friendships, stigma, and learning to advocate for themselves. The visuals of medical tools and a series of joyful moments capture the mix of fear and empowerment associated with growing up with a chronic condition

The Emergent Patient tells the story of a sudden diagnosis, and the urgency and severity of early diabetes symptoms. The storyteller reflects on a pivotal hospital experience, accompanied by imagery of bedsides, exercise routines, and recovery. The narrative emphasizes strength during adversity, and the importance of a positive mindset during the early stages of diabetes care

In Control centres on the desire to take charge of one’s condition and life. The story reflects on a period of instability in their life, the fear of missing out on social and family events, and regaining control and decision-making power amidst the challenges of managing a chronic condition. The narrative is complemented with powerful imagery of family and personal moments, to illustrate the storyteller’s transition from uncertainty to feeling empowered

Living with T1D presents a relatable account of everyday life with diabetes. Through personal photographs and soft ambient music, the storyteller offers insight into the routine, emotional challenges, and continuous journey towards balance and self-acceptance

Caregivers

Strength narrates a mother’s emotional journey through her daughter’s unexpected diagnosis with diabetic ketoacidosis. The story recounts her initial fear and lack of understanding, and her progression to demonstrating inner strength, advocacy, compassion, and a desire to learn how to best support her child. The shift in music, from sombre to hopeful, mirrors the transition in emotions experienced by the storyteller throughout the video

February 22nd, 2019 captures a pivotal moment in a family’s life: the diagnosis day. The storyteller reflects on how life changed permanently, and their feelings of fear and emotional overwhelm. The storyteller also explores the concept of “firsts” – how new experiences following diagnosis day have been redefined by diabetes and can cause feelings of worry. Simultaneously, the story also highlights the mother’s growing confidence in her child to overcome diabetes-related obstacles amidst new experiences

Done Crying follows a mother’s reflections after her child’s diagnosis on Christmas Day. She describes her grief, questioning of faith, and eventual path to acceptance. The narration is accompanied by powerful visuals of her children and her journey of becoming a nurse, and recounts her vulnerability, strength, and resilience throughout the process

A Journey to T1D shares a caregiver’s personal growth and empowerment following their child’s diagnosis. The story is told through the lens of a parent learning to be a strong support figure, and their commitment to compassion, strength, perseverance, and understanding the responsibilities associated with being a supportive caregiver

Stage 2: Ideate

The community event was attended by 82 people, including 37 AYAs with T1D, 28 caregivers of adolescents with T1D, four clinicians, and 13 community partners. Of the 32 attendees who completed the demographic survey, 75% (24/32) were identified as women, 25% (8/32) were identified as men, 28% (9/32) were between the ages of 14 and 19, 18.8% (6/32) were between the ages of 35 and 44, 18% (6/32) were identified as South Asian, 18% (6/32) were identified as White, 15.6% (5/32) were identified as Black, African, and Caribbean, and 9.4% (3/32) respondents were identified as Middle Eastern. Additionally, some individual respondents were identified as East Asian or mixed heritage.

All digital stories for which consent to share had been received (9/11) were showcased at the event. Drawing on the messages and core themes from the digital stories, panel members shared their personal experiences and discussed the following key topics: (1) the learning curve associated with new diagnoses, treatments, and technologies; (2) the importance of peer support for caregivers during the diagnosis period; and (3) providing support to adolescents as they transition to adult care and adulthood.

During the 25/10 crowdsourcing activity, participants generated and scored 52 unique ideas for peer support intervention priorities, with scores ranging from 10.5 to 24. The Design Team summarized and refined the ideas to address overlapping and duplicated ideas and generated the final top ten ideas based on the total score (Table 2). Ideas primarily focused on T1D education and awareness in schools and the community, including events and directories that could facilitate connections and socialization among AYAs with T1D and caregivers, as well as dedicated peer support and advocacy networks within paediatric diabetes clinics and beyond. The top six ideas were further refined into “challenge statements” for the Hackathon in stage 3: prototype.

Table 2.

Top 10 ideas for peer support interventions from the community event

#	Refined idea	Score
1	Assemblies/workshops at schools for students and teachers to (a) educate about T1D, (b) explain accessibility requirements and warning signs, (c) allow students to connect/relate to and normalize T1D. These workshops can be held at least twice per year	24
2	Incentivized events for youth with T1D to connect and learn from other youth. These can also include in-person events with a facilitator such as cooking lessons, craft, paint night, hiking, etc. The facilitator can be selected based on the age group of the participants	24
3	Incentivized (either via government or sponsors) community events, open to people with and without T1D, to educate (both medically and beyond) about T1D and normalize T1D while providing additional avenues for connection	23
4	Using adolescent volunteers to familiarize youth with T1D and forming a virtual support line allowing youth to seek support anonymously	23
5	Generate materials for caregivers to use to educate people around them about T1D and how to manage T1D for those that may need it	22.5
6	Develop a dedicated support network by age for youth with T1D that provides exchange of ideas, relevant events, and regular support	22.5
7	In-person activities for caregivers, such a cooking lessons and hiking, etc., to connect and share lived experience. This can establish regular community interactions for the caregivers and seek support when they need it	22
8	Organize interactions between the hospitals/clinicians/healthcare providers with the families with T1D children, to facilitate communication outside the clinic	22
9	Create a common directory for T1D families to share material such as the DSTs, personal experiences, useful resources, etc. This will be especially helpful for those that are newly diagnosed	22
10	A designated peer advocacy group that travels between schools to speak to students in high school and middle school about T1D	21

DST: digital storytelling.

Stage 3: Prototype – Hackathon

Six caregivers and 18 AYAs with T1D (age 16–23) participated in the Hackathon. Of these, 50% (3/6) of caregivers and 61% (11/18) of AYAs had participated in one or more of the previous stages.

Of the 12 AYAs who completed the demographic survey, 25% (3/12) were identified as women, and 75% (9/12) were identified as men. Of these, 42% (5/12) were identified as South Asian, 17% (2/12) identified as Black, African, and Caribbean, 17% (2/12) identified as Middle Eastern, 8% (1/12) identified as mixed heritage, 8% (1/12) identified as White, and 8% (1/12) identified as Latin American. Out of the respondents, 58% (7/12) were between the ages of 14 and 19 and 42% (5/12) were between the ages of 20 and 24.

All six caregiver participants completed the demographic survey, 83% (5/6) identified as women and 17% (1/6) identified as men. Of these, 50% (3/6) were Middle Eastern, 33% (2/6) were White, and 17% (1/6) were South Asian. Out of the caregiver participants, 50% (3/6) were between the ages of 45 and 54, 33% (2/6) were between the ages of 35 and 44, and 17% (1/6) chose not to disclose their age.

There were three AYA teams, each with six members, and two caregiver teams, each with three members. Each team created a unique team name and was given a challenge as outlined in Table 3.

Table 3.

Prioritized idea, hackathon challenge statements, assigned teams, and prototype solutions

Top-scoring idea/s	Derived challenge statement	Team name	Prototype solutions
AYAs with T1D
Assemblies/workshops at schools for students and teachers to (a) educate about T1D, (b) explain accessibility requirements and warning signs, (c) allow students to connect/relate to and normalize T1D. These workshops can be held at least twice per year	Design a peer support solution that can reduce T1D stigma and increase T1D awareness in schools	The Carb Counters	A multimedia stigma reduction education programme in schoolsa
Incentivized social events for adolescents with T1D to connect and learn from other adolescents (i.e., cooking lessons, crafts, hiking, etc.). The event facilitators can be selected based on the age group of the participants	Design a peer support solution that incentivizes participation and enables connections between adolescents with T1D (incentives need not be monetary but can be other types of “reward” as well)	Diabuddy	A dedicated app for T1D adolescents that gamifies diabetes management
Using adolescent volunteers to familiarize adolescents with T1D and forming a virtual support line allowing adolescents to seek support anonymously	Design a peer support solution for adolescents with T1D that allows age-appropriate access, and if needed, anonymous access, to support challenges faced while living with T1D	The Glycemic Control	Structured event programme for adolescents with T1D
Develop a dedicated support network by age for adolescents with T1D that provides exchange of ideas, relevant events, and regular support
Caregivers
Host in-person activities for caregivers (cooking lessons, hiking, etc.) to connect and share lived experiences	Design a peer support solution that enhances caregiver-to-caregiver connections, encourages shared learning and/or skill development for caregivers of adolescents with T1D	J.A.R. of Solutions	A peer support group for caregivers of newly diagnosed children and adolescents with T1Db
Generate materials for caregivers to use to educate people around them about T1D and how to manage T1D for those that may need it	Design a peer support solution for caregivers that utilizes education for diabetes communities and/or people external to diabetes communities	T1D 360+	A holistic educational solution leveraging peer support for caregivers

^aWinning idea.

^bRunner-up idea.

The winning idea, as judged by the panel, was from The Carb Counters, which proposed stigma reduction education programmes in schools. Their approach included unique and age-appropriate workshops, videos, and brochures tailored for elementary, middle, and high school students that focus on the stereotypes associated with living with T1D. As part of the educational material, the group proposed using videos (animated for elementary audiences and lived experience-driven videos for older students), coupled with active social events, to address stigma-causing stereotypes within educational settings.

The runner-up idea was from the J.A.R. of Solutions group, which suggested establishing a peer support group for caregivers of newly diagnosed children and adolescents with T1D. They specifically proposed a clinic-based caregiver-facilitated programme to build trust and centre lived experience and peer support. Intake into the programme was proposed to be facilitated through referrals by healthcare teams after diagnosis, to help caregivers better support their recently diagnosed adolescents. Other notable solutions included (1) T1D 360+: an educational peer support group for caregivers, focused on spreading educational resources through brochures and pamphlets, social media, and virtual events and workshops, (2) Diabuddy: a dedicated e-health application for T1D adolescents that gamifies diabetes self-management, promotes teamwork and support among players through online chats, and involves incentives for better glycaemic control through in-application points and reward systems, and (3) The Glycemic Control: structured monthly event programming for adolescents with T1D to discuss a variety of diabetes-related topics and yearly in-person events to foster social connection.

Discussion

Our work demonstrated the successful use of person-centred approaches, such as CBPR and HCD, to incorporate the lived experiences of adolescents with T1D and their caregivers into programme design. Starting from a foundational level, these approaches guided us in co-designing peer support interventions, moving from defining needs to prototyping solutions. Throughout the project, insights from lived experiences were intentionally integrated into every activity under the guidance and governance of the Design Team, which included members with lived experience. Applying CBPR and HCD across all stages fostered an environment of mutual dialogue, collaboration, respect, and trust, ensuring that subsequent research activities were grounded in the realities and logistical considerations of those with lived experience.

The themes in the digital stories created during the empathize and define stage, related to diagnosis, diabetes management, resources, support, and caregiver grief, aligned with extensive existing evidence documenting the challenges faced by individuals living with and caring for those with T1D [17, 86–89]. Overlapping themes included struggles with self-esteem, diabetes stigma, trouble navigating relationships with friends and family, stress around diabetes management, anxiety, pressure to support T1D management, needing social support, and lacking resources for caregivers [15, 72–77, 89]. Our unique approach, which integrated the Design Team within all steps, enabled us to identify focus areas through the lens of lived experience and tailor subsequent stages more closely to the specific needs of adolescents with T1D and their caregivers. This hallmark of patient-centred research [90–92] ensured that the prototypes were grounded in real-world experiences and priorities.

The ideate stage enabled us to further develop and prioritize actionable ideas for peer support interventions. Existing evidence shows that patients tend to generate highly actionable and creative ideas when encouraged to share their perspectives – particularly individuals who have had negative healthcare experiences, belong to minority racial or ethnic groups, or live with chronic diseases like T1D [90, 93]. By engaging community event attendees from across the diverse Peel Region – who were equipped with an understanding of the nuanced needs and challenges faced by youth with T1D and their caregivers – and encouraging reflection on both the lived experiences shared by panellists and their own, we successfully generated a broad range of potential peer support interventions. The prioritization and scoring activity further enabled participants to collaboratively identify the most important ideas, demonstrating that democratic creative methods, such as these, are not only feasible for a large, non-research-focused audience but also effective in stimulating innovation and ensuring equal participation opportunities for all, regardless of experience [78, 94]. The prototype stage brought together all previous findings to co-design practical, relevant, and contextually aligned peer support prototypes, directly informed by lived and living experiences. Evidence shows that solutions developed in this manner are more likely to be implemented and to have a meaningful impact [95, 96]. In our case, the two winning prototypes particularly addressed critical concerns that have been well documented in existing research.

The winning prototype focused on the diabetes-related stigma that adolescents living with T1D face within educational settings. Stigma is a complex damaging phenomenon that involves labelling (e.g., teens with T1D are different from their peers), stereotyping (assigning beliefs to label people: e.g., teens with T1D are weaker than their peers or cannot do regular activities like their teen peers), separation (categorizing those labelled as us vs. them), status loss (downward placement in the status hierarchy: e.g., teens with T1D are not as popular as their peers), and discrimination (unequal treatment or negative behaviours towards teens with T1D) that co-occur in contexts with varying power dynamics [97]. Studies have shown that over 60% of adolescents with T1D can experience stigma [98]. Although organizations like the Canadian Pediatric Society, Canadian Pediatric Endocrine Group, and Diabetes Canada have advocated for consistent policies to ensure the safe and equitable treatment of students with diabetes [99], evidence has shown that diabetes-related stigma is prevalent in adolescents living with T1D within school settings and leads to internalized feelings of shame, discrimination, and exclusion [100, 101], which can negatively impact psychological, social, and physical well-being [102, 103]. Diabetes-related stigma can also prevent those living with T1D from discussing their health experiences and seeking support, thus increasing their risks of hypoglycaemia, diabetic ketoacidosis, and glycaemic instability [103–110]. To address this, AYAs in the Hackathon team proposed a multimodal awareness and myth-busting campaign within educational institutions, tailored to different age groups, ranging from elementary to high school levels. Using examples of their own experiences of being misunderstood by teachers or excluded by peers, the team proposed using lived experience knowledge to ground the stigma reduction campaign. Although the international consensus statement on diabetes-related stigma has highlighted the importance of involving people with lived experience in addressing this gap, no such interventions appear to exist [110, 111]. Moreover, given how the manifestation of stigma intersects with various social identities such as race, gender, ability, and socio-economic status, it is extremely important that programming is intentionally built and responsive to these unique considerations [112]. The AYA’s prototype thus not only addresses this evidence-informed gap but also demonstrates that it is a priority and that those with lived experience have the desire to be a part of practical, actionable solutions that can address it.

Similarly, the second winning (runner-up) prototype focused on addressing the well-documented stress, loneliness, and anxiety of caregivers with newly diagnosed adolescents [113]. Upon receiving a diagnosis of T1D for their child, caregivers often encounter challenges not only in managing conflicts with their child regarding diabetes management but also in sustaining social relationships [114]. They are frequently misunderstood by family members or peers who do not have children with T1D, which further impacts their psychological, physical, and social well-being [17, 18, 113, 114]. Many caregivers, therefore, highlight the importance of connecting with those who also have children with T1D, and have reported alleviated stress and loneliness when finding peer support through online networks such as blogs and social media groups [114, 115]. Traditionally, peer support programmes for parents are delivered outside the clinic appointments and by specialized healthcare providers such as social workers and psychologists [116–118]. However, training people with lived experience to provide peer support has shown promise and appears to be more cost-effective, appealing, easier to deliver, and beneficial for both parent coaches and the target parents [119–121]. The prototype developed by our caregiver group further substantiates this notion, as it proposes a peer support group facilitated by caregiver volunteers, specifically parents of children with T1D, to discuss concerns with peers without the necessity of involving healthcare providers. In this context, participants can share openly and learn from one another in a secure environment. Notably, the proposed prototype is particularly focused on caregivers of newly diagnosed children, which aligns with existing literature that extensively documents the shock, fear, and grief experienced by caregivers upon diagnosis, highlighting significant implications for their health and quality of life, as they navigate the need to become experts or remain in a constant state of vigilance during this vulnerable period [120, 122–124]. However, there appears to be limited evidence on peer support programmes targeting this subset of caregivers, as many programmes restrict inclusion to those with a diagnosis of at least 6 months prior, despite existing programmes indicating their high feasibility, benefit, and necessity [125]. Thus, this prototype once again highlights a gap that is a priority for those with lived experiences and suggests a pathway to address it.

Our work, therefore, has shown that integrating both CBPR and HCD approaches, along with unique multimodal, arts-based, and innovative co-design methodologies, can allow for the prioritization of lived experiences to develop prototypes that are not only aligned with existing evidence but also provide relevant, practical, and actionable paths forward to address meaningful gaps. Furthermore, since our approach and activities brought together people living with the same diagnosis and similar lived experiences, our work helped foster meaningful and supportive relationships for many who previously lacked these avenues, indicating a further strength of this methodology when exploring topics such as peer support.

Limitations

This study has several limitations. First, it involved a small subset of the T1D population, with recruitment primarily focused within the paediatric diabetes clinic at THP. This may have excluded those who traditionally do not participate in research within hospital settings, or are not receiving consistent care by a tertiary diabetes care clinic. Additionally, because activities like the digital storytelling workshops and the Hackathon were longitudinal in nature, participants were selected based on their willingness and ability to fully engage in the entire process (e.g., all six workshops, the community event, or the 10-day Hackathon). Despite being flexible and understanding of participants’ commitments, and scheduling events and workshops based on feedback from the Design Team, we prioritized having full engagement within a particular study phase to ensure meaningful participation and contributions. However, we recognize that this prioritization may have discouraged interested individuals who were unable to commit to the required time frame. Furthermore, the requirement for participants to be comfortable with English may have excluded non-English speakers or those with lower proficiency, potentially limiting the diversity of perspectives and insights – particularly important in the highly multicultural region of Peel, Ontario [56]. Moreover, we did not have any perspectives from those identifying as fathers in the digital stories created in phase 1; however, we did have those perspectives in the remaining stages and therefore captured some of those experiences in our work. Lastly, the digital storytelling workshops were conducted virtually for convenience, to mitigate transportation, accessibility, socio-economic, and geographical barriers. However, sharing sensitive health information and discussing personal T1D-related topics on a virtual platform can be challenging, especially when conveying positive body language cues, engagement, encouragement, and feedback is difficult [126, 127]. This could have impacted the depth of discussion and collaboration.

Conclusion and Next Steps

Our innovative use of CBPR and HCD approaches has enabled us to co-design peer support interventions for adolescents with T1D and their caregivers that are both contextually relevant and deeply rooted in lived experience. Our work has highlighted two key priorities within the T1D communities we serve: addressing diabetes-related stigma in educational settings and providing peer support for caregivers of newly diagnosed youth.

As next steps, we are working with the winning team members and have secured funding to develop awareness materials to reduce diabetes-related stigma in schools. At the end of this recently funded project, we will have developed a rigorous intervention, accompanying materials, and an implementation plan to address diabetes-related stigma in schools, which can then be tested and evaluated in future studies. Additionally, we are exploring the development and implementation of a caregiver support group for newly diagnosed adolescents within the paediatric diabetes clinic at THP. Our work can serve as a model for those seeking to integrate CBPR and HCD approaches and build capacity for patient-oriented research within T1D and other clinical contexts. Our experience demonstrates how combining these methods can lead to prototypes that closely align with lived experiences, perspectives, and priorities.

Acknowledgments

We would like to thank all our Design Team members, KTE participants, Hackathon participants, judges, mentors, our colleagues at the Institute for Better Health, and our community partners for their invaluable insights and contributions. From the project team, we wanted to recognize Megan Alexander (PRA), Amish Parikh (Co-PI), Jon McGavock (Co-PI), Elaine Wilson (Diabetes Healthcare Provider), Rani Sanderson (StoryCenter Canada), and Heather Miller (Panelist and Collaborator from Diabetes Hope Foundation) for their support with the project.

Statement of Ethics

This study protocol was approved by the Research Ethics Board at Trillium Health Partners, study approval ID: 1104. For the DST workshops, informed written consent was taken from all participants. For adolescents who did not have the capacity to consent, assent was taken, and written informed consent was obtained by their legal guardian. Moreover, consent to share digital stories was also obtained from participants.

Conflict of Interest Statement

The authors declare that there are no conflicts of interest regarding the publication of this article. However, the authors would still like to make the following declarations: Ian Zenlea received advisory board fees from Novo Nordisk Canada, Dexcom, and Abbott Diabetes Care unrelated to this work.

Funding Sources

The Canadian Institutes of Health Research (Grant No. PJT-178238) funded this project. The funder had no role in the design, data collection, data analysis, and reporting of this study.

Author Contributions

Conceptualization, methodology: I.S.Z., D.F., and C.D.; study activities: S.A., E.P., U.O., C.M.-L., D.L., D.O.-B., and A.P.; formal analysis: S.A., E.P., U.O., and I.S.Z.; guidance and engagement: S.A., E.P., U.O., D.F., I.S.Z., C.M.-L., D.L., D.O.-B., A.P., and E.M.; writing – original draft preparation: S.A., E.P., and I.S.Z.; writing – review and editing: S.A., E.P., U.O., D.F., I.S.Z., C.D., D.L., C.M.-L., D.O.-B., A.P., and E.M.; supervision: D.F. and I.S.Z.; funding acquisition: D.F., I.S.Z., C.D., E.M., and A.P.

Funding Statement

The Canadian Institutes of Health Research (Grant No. PJT-178238) funded this project. The funder had no role in the design, data collection, data analysis, and reporting of this study.

Data Availability Statement

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions. Further enquiries can be directed to the corresponding author. A lay-person summary of our work has been published as a community report on the Family and Child Health Initiative website [128].