Type 1 diabetes (T1D) is one of the most common chronic illnesses in youth, impacting 304,000 children and adolescents aged <20 years in the United States, most of whom spend the majority of their time in schools [1]. Managing T1D is particularly challenging, as it involves carbohydrate counting, insulin dosage calculations, frequent glucose monitoring, and attention to physical activity [2]. As a result, it is not surprising that 82% of youth with T1D do not achieve the glycemic target of hemoglobin A_1c of <7% recommended by national and international guidelines [3-5]. In addition, significant inequity exists in glycemic outcomes among different demographic groups, with non-Hispanic White youth having 1.34 greater odds of achieving hemoglobin A_1c <7% compared with Black and Hispanic youth [6].

Diabetes technologies such as insulin pumps, continuous glucose monitors, and automated insulin delivery systems can reduce the burden associated with diabetes management and improve the quality of life in youth with T1D [7-11]. However, Black and Hispanic youth with T1D are less likely to initiate and use them compared with non-Hispanic White youth with T1D, regardless of socioeconomic status [12-15]. Increasing diabetes device use in this population is a potential mechanism to reduce inequity in health outcomes.

Numerous studies have explored social-ecological factors that contribute to lower device uptake among Black and Hispanic youth with T1D [16-20]. Key findings include the impact of longstanding structural inequities, structural racism, physician bias, unmet social needs, barriers at school, and challenges related to care coordination [6,21-23]. Recognizing that these barriers exist at individual, family, and community levels, community-based interventions can be used to address these barriers in the environments where Black and Hispanic youth with T1D spend the majority of their time, such as school settings.

A community health worker (CHW) model is a potential community-based intervention that can address inequity associated with diabetes technology use. CHWs are trusted community members who can provide various services, ranging from basic patient education to social needs support to linking different care sites, such as schools and clinics [24-28]. For example, previous CHW interventions for youth with asthma have demonstrated significant reductions in acute care use, inpatient hospitalizations, days with symptoms, missed school days for children, and missed workdays for caregivers [24,27,29-31]. The success of the CHW model in other chronic childhood conditions suggests that a CHW care model can potentially improve diabetes device uptake and health outcomes in Black and Hispanic youth with T1D.

However, to actualize such a model for youth with T1D, it is necessary to understand how the CHW specialty care model can address specific barriers related to diabetes technology for clinicians, particularly in the clinic and school settings. Garnering perspectives from multidisciplinary clinicians who provide health care to these children in those settings could help fill this gap in the literature. Guided by human-centered design [32] and diabetes technology journey framework [33], this study aimed (1) to identify diabetes and school clinicians’ perspectives on barriers to diabetes device use among Black and Hispanic youth with T1D and (2) to help design a prototype of a CHW intervention to address these challenges.

Given that the study aims to explore ways a CHW can address diabetes device barriers at diabetes and school-based clinics, the study was performed from a pragmatist point of view using a general inductive approach. The Standards for Reporting Qualitative Research checklist for qualitative research reporting was used for this report.

The Children’s Hospital at Montefiore Einstein (CHAM) is a safety-net hospital in the Bronx, New York, part of the Montefiore Health System. The demographics of patients receiving care at CHAM consist of approximately 30% Black and 55% Hispanic, with most of the patients on public insurance. The New York Medicaid plan covers the majority of the costs associated with diabetes technology. The Montefiore School Health Program (MSHP), a branch of the Montefiore Health System, is the most extensive school-based health program in the United States [34]. MSHP provides coordinated primary care and preventative services (eg, physical examinations, immunizations, dental care, and mental health) as well as urgent care and referrals to subspecialists for school-aged children and adolescents in the Bronx [34]. School-based health programs in New York City have been shown to reduce school absences, parents’ time away from work, and hospital visits [35]. Services through the program are performed by physicians, nurse practitioners (NPs), and physician assistants.

Participants were diabetes clinicians employed at CHAM diabetes center (physicians, NPs, certified diabetes care and education specialists, social workers, and psychologists) or clinicians from the MSHP who provide care to Black or Hispanic youth with T1D aged 2-17 years. A staff member from MSHP helped identify potential MSHP clinicians, and CWC identified potential CHAM diabetes clinicians. Participants were recruited via flyers, emails, and word of mouth. Convenience sampling was used. Individuals interested in the study contacted the study coordinator (MGM). Participants were recruited from CHAM or MSHP in person at the clinic or over the phone.

The research team included an early-career pediatric endocrinologist at CHAM (CWC), a senior pediatric endocrinologist (LL), a pediatric endocrinology fellow at CHAM (AJD), a study coordinator at CHAM (MGM), a general pediatrician (MR), and an adult endocrinologist (SA). The research team had extensive experience in all aspects of the study, including human-centered design (CWC, AJD, and SA), qualitative research (CWC, AJD, LL, MGM, MR, and SA), health services research (CWC, LL, MR, and SA), school-based interventions (CWC and MR), and type 1 clinical diabetes research (CWC, AJD, LL, and SA). A few study team members (CWC and AJD) work closely with clinicians from CHAM; however, the research team did not have relationships with clinicians from MSHP. Three study team members performed the workshops, with each workshop including 2 of the 3 personnel (CWC, AJD, and MGM).

The multidisciplinary research team created the web-based interactive workshop using literature review, advisory boards, and clinical expertise. The human-centered design framework helped inform the workshops. Human-centered design relies on 3 steps: (1) understanding barriers from the target users; (2) analyzing and synthesizing to identify the main obstacles related to the issues; and (3) discussing and co-designing solutions with other attendees to the identified challenges, with specific details discussed such as who would deliver the intervention, when, to whom, and how [32]. This approach has been used previously to elicit perspectives from young adults with T1D [33] and caregivers of youth with T1D [23] on diabetes technology barriers and to cocreate solutions to address these barriers. The workshop materials were created over 2 months and practiced internally through mock sessions before deployment. These sessions helped to provide additional feedback, polish the materials, and effectively deliver the content.

The workshop was divided into 2 main activities. During the first activity, participants were introduced to the diabetes technology journey framework, which is defined as three stages: (1) learning and deciding to get technology; (2) getting and starting to use the technology; and (3) managing problems with technology [33]. Participants were asked to share barriers associated with each step of this process from their perspectives and their patients’ experiences.

In activity 2, participants prototyped the CHW intervention to address HRSNs and to support families and clinicians with the challenges identified in the first activity. They were asked to brainstorm specific ways that a CHW could address barriers affecting families of youth with T1D, as well as their barriers to prescribing diabetes devices and supporting families with device use. The participants’ real-time responses were shared on the screen to facilitate discussion. The interview guide for activities 1 and 2 from the workshop is shown in Table 1 and Textbox 1.

Workshops were held on a privacy-protected video platform and video-recorded for analysis purposes. Baseline data on practice location, duration of practice, and demographics (credentials, practice location, and years of practice) were collected using REDCap (Research Electronic Data Capture; Vanderblit University) [36,37] questionnaires completed by participants.

This exploratory study was approved by the Institutional Review Board of the Albert Einstein College of Medicine (2022-14609). Participants were provided with information about the study. All participants provided written or oral informed consent per institutional review board approval. All study data have been deidentified to protect the privacy and confidentiality of the participants. Sensitive content was redacted from the transcripts to avoid identification. Participants who completed the 2-hour workshop and survey were each provided with a US $100 gift card as compensation.

Workshops were recorded, transcribed, and coded in NVivo [38]. Three coders (CWC, AJD, and MGM) analyzed the workshops using a general inductive approach [39]. In activity 1, a coding structure with categories for barriers to diabetes technology use was created. In activity 2, categories for solutions using the CHW intervention were generated. The coding framework was updated with emergent codes, and codes were unified according to similarities. Overlapping concepts were developed into themes, with workshops continuing until thematic saturation was reached [40]. Information was obtained directly from clinicians who interact frequently with Black and Hispanic youth with T1D and their caregivers to ensure credibility. A senior team member reviewed the themes created by the 3 main coders, providing dependability and ensuring the methodology was followed appropriately. An audit trail was kept to track coding decisions.

Results from the self-reported questionnaire were analyzed in Microsoft Excel and are presented as the mean (SD) for continuous variables. For categorical variables, frequencies or proportions are reported.

Overall, 17 participants completed the human-centered design workshops and surveys. Of these, 11 (65%) were clinicians from the diabetes clinic and 6 (35%) were school-based clinicians from elementary, middle, and high schools in the Bronx. Descriptive data for participating clinicians are presented in Table 2. A total of 4 workshops, 3 groups with participants from the diabetes clinics and 1 with school-based clinicians, were conducted between September 2023 and December 2023. Each group had 3-6 participants.

In total, 4 key barriers and their corresponding solution themes were identified. Figure 1 represents the cocreated solutions by the clinicians.

Clinicians identified two key barriers to the diabetes technology uptake and use for youth with T1D: (1) general and specific HRSNs interfering with diabetes technology; and (2) difficulty navigating health care systems, insurance, and pharmacy benefits for youth and their families. In addition, clinicians identified barriers that interfered with supporting their patients with diabetes technology, including limited technology support and infrastructure to support diabetes technology use in school and lack of technology support and time to troubleshoot diabetes devices in diabetes clinics.

This study presents the perspectives of diabetes and school-based clinicians on solutions that a CHW can deliver to address barriers associated with diabetes technology use among Black and Hispanic youth with T1D. Four key solutions emerged: (1) HRSN identification and navigation; (2) peer support for caregivers to navigate diabetes device logistics; (3) acting as a school liaison to improve communication between caregivers, schools, and diabetes clinicians; and (4) administrative support to offload the logistical burdens of clinicians.

Regarding HRSNs, previous literature has shown that HRSNs can interfere with diabetes technology use [33,41,42]. However, few studies explored the impact of HRSNs on diabetes device use in school settings. Our study found that school clinicians faced challenges related to both general and diabetes technology–specific social needs. School clinicians often lack the time or support to manage these HRSNs. As a result, HRSNs can disrupt the student’s education and increase the workload for school clinicians. Therefore, our participants proposed involving a CHW to perform social care navigation. Although a CHW’s core role is to provide social care navigation [43], they can serve as a bridge between schools with hospital systems to address HRSNs [44], making this a compelling solution.

In addition, the participants recognized that many caregivers struggled with the organizational skills required to manage diabetes technology, often leading to inconsistent use. They envisioned a new diabetes team member who could function as a peer mentor to empower families to perform care coordination. Previous studies have employed CHWs to encourage disease self-management using motivational interviewing techniques [45]. CHWs are ideal candidates to be health coaches or deliver motivational interviewing techniques because they are trusted community members [43]. They have the potential to positively impact youth with T1D and their caregivers to manage diabetes technology independently.

Regarding the lack of diabetes support in school, diabetes clinicians also desired someone to help caregivers advocate for their child’s rights in the school setting. Despite encouragement from the medical team, caregivers do not always seek school medical accommodations for unclear reasons. While this study did not explore the causes, possible challenges may include mistrust in the health care and education systems, language barriers, low medical literacy, and competing priorities [46,47]. Given their shared experiences with caregivers and ability to foster trust [33,43], CHWs may be more effective in motivating caregivers to seek additional school services (eg, attend medical accommodation meetings).

Regarding troubleshooting diabetes technology, both clinician types requested ongoing education, specifically more hands-on opportunities. While web-based interventions have risen in popularity for diabetes device education [48-51], our study found that clinicians strongly prefer in-person training. In addition, diabetes clinicians emphasized the importance of wearing the technology on their bodies as part of their learning process. The opportunity to wear diabetes devices should also be offered to school clinicians to increase their understanding and confidence in using diabetes technology. In addition, school clinicians desired personalized training tailored to their students’ specific devices. While most CHW interventions focus on educating patients, a study found that CHWs were open to collaborating and educating school nurses [52]. Furthermore, our findings suggest that school-based clinicians are receptive to a CHW educating them on diabetes devices, specifically their student’s devices. However, there are some reservations from both school and diabetes clinicians regarding the CHWs’ level of training in diabetes technology [53].

Our study has several limitations. First, the present analysis was based on the clinicians’ perspectives and did not elicit the perspectives of other school personnel, including teachers or paraprofessionals. Future efforts should include these additional stakeholders to ensure the feasibility and buy-in of the intervention across all groups. Second, participants were allowed to brainstorm freely without considering the limitations of a CHW role, which was consistent with human-centered design principles [32]. The authors recognize that it may not be possible for CHWs to perform all the solutions presented. However, allowing participants to cocreate solutions without restrictions enabled the study team to fully understand participants’ perspectives.

In conclusion, this study used a novel human-centered design methodology to better understand barriers to diabetes technology use for Black and Hispanic youth with T1D from the perspectives of their diabetes and school-based clinicians. In addition, this workshop encourages CHW intervention prototyping to overcome perceived barriers. Including the perspectives of diabetes and school-based clinicians in the design process may help enhance the feasibility and acceptability of a future T1D CHW care model that aims to connect clinics and schools. The next step is to integrate the perspectives of caregivers and youth with T1D on a T1D CHW specialty care model, as their insights will further enrich the intervention development.