Abstract
Introduction:
Caring for youth with type 1 diabetes (T1D) can be challenging for caregivers. Diabetes technology can improve glycemic outcomes and reduce the burden for youth with T1D. Little is known about the emotional challenges caregivers experience in relation to each step of the diabetes technology journey. Using qualitative methods, this study aimed to understand the emotional challenges caregivers encounter along the diabetes technology journey and to explore caregivers’ attitudes toward diabetes technology, diabetes burden, and diabetes-specific family conflict using patient-reported outcomes surveys.
Methods:
Nine virtual workshops were held with caregivers of Black and Hispanic/Latino youth aged 2-17 years old with T1D managed with diabetes technology to elicit emotional challenges to the use of diabetes technology. All sessions were recorded and analyzed using an inductive approach. Caregivers also completed validated surveys regarding diabetes technology attitude, diabetes burden, and updated diabetes-specific family conflict.
Results:
Emotional challenges with each step of the diabetes journey included: 1) mistrust of the device leading to fear, 2) anxiety related to possible device malfunctions, and 3) frustration with device visibility and diabetes technology troubleshooting. Most caregivers (88%) reported low diabetes burden, positive attitude towards diabetes technology (95% CI [17.6-20.2]), and low diabetes-specific family conflict (95% CI [15.2-39.5]).
Conclusion:
This study identified key emotional challenges caregivers face during the diabetes technology journey for youth with T1D. Proactively addressing emotional challenges to the adoption and use of diabetes technology may ultimately lead to greater adoption and use.
Keywords: Emotional challenges, Type 1 Diabetes, Diabetes technology, Youth, Caregivers
Plain Language Summary
Diabetes technology is known to improve glycemic outcomes for individuals with type 1 diabetes. However, youth with type 1 diabetes and their caregivers from historically marginalized communities often face barriers to initiating and sustaining the use of these devices. This manuscript identifies key emotional challenges caregivers experience during the processes of learning about, obtaining, and troubleshooting diabetes technology. Understanding these emotional challenges can inform the development of targeted interventions aimed at alleviating these barriers and ultimately improving health outcomes for youth with type 1 diabetes.
Introduction
Type 1 diabetes (T1D) is an autoimmune process leading to pancreatic beta cell destruction and insulin dependence (1). Living with T1D requires multiple tasks throughout the day, including frequent monitoring of blood glucose (BG), carbohydrate counting and calculation of insulin dose, and insulin administration, all while balancing other life responsibilities. Between 1990 and 2019, the incidence of T1D in youth and young adults increased by nearly 50% and continues to rise (2, 3). The advancements of diabetes technology, including continuous glucose monitor (CGM) systems and insulin pumps, have transformed diabetes care, reducing diabetes burden and improving health outcomes (4). Consequently, diabetes technology is now the standard of care for managing youth with T1D and should be offered to all (6).
Caregivers, defined as adults who supervise and support youth with daily tasks related to T1D, play an integral role in a child’s life, especially regarding diabetes technology use. While the decision regarding diabetes technology use involves youth with T1D, their caregivers, and medical providers (7, 8), typically, the ultimate responsibility falls on the caregivers. Even for adolescents who may be capable of independent diabetes management, caregivers must still oversee and supervise the use of diabetes technology. Although not specific to diabetes technology, Weissberg-Benchel et al. report that youth have an improved diabetes-related quality of life when their parents have a collaborative approach with them while managing their T1D (9). A previous study exploring the perceptions of children, adolescents, and adults with T1D and their families on automated insulin delivery (AID) systems found that participants expected diabetes technology to alleviate diabetes-related burden on the individual with T1D and their family members, reduce daily stress, and improve family relationships (10). However, diabetes devices can be complex, and caregivers must overcome several barriers to adopt and use these technologies consistently.
To receive the maximum benefit from diabetes technology, the utilization of CGMs and insulin pumps simultaneously to allow for an AID system is key. Despite these technological advancements, the intricacies of the process leave room for malfunction and discontinuation. Barriers to using and maintaining AID systems include cost, limited digital health literacy, and difficulty coordinating care for diabetes supplies (11, 12). Other challenges with diabetes technology include the emotional burden of interacting with the device, social stigma associated with wearing noticeable devices, and skin irritation or physical discomfort from constantly wearing a device (13). Amplified adverse feelings have been recognized as potential barriers to diabetes device use (13).
The complexity of using diabetes devices can heighten emotions and may increase caregivers’ burden. Caregivers from historically marginalized communities may be at greater risk of emotional problems due to greater exposure to unmet health-related social needs and stressors such as housing instability, food insecurity, and lack of insurance (14, 15). For example, Keeton et al. found that social needs independently predicted increased odds of frequent emotional problems or perceived stress among low-income Latinx mothers (16). Therefore, additional negative emotions related to diabetes devices may lead to hesitancy to start or a higher likelihood of discontinuing diabetes devices.
There is limited data on the emotional challenges experienced by caregivers of youth with T1D during the process of learning about, obtaining, and managing various diabetes technology scenarios. The present study hypothesized that caregivers may face emotional obstacles associated with the use of diabetes devices. This study explored the emotional challenges that Black and Hispanic/Latino caregivers of youth with T1D encounter throughout the diabetes technology journey, utilizing qualitative methodology. Recognizing and understanding these emotional challenges can assist in designing interventions to promote and maintain the use of diabetes devices for youth with T1D.
Materials and Methods
Study Design
This is a sub-analysis of a larger study that leveraged a human-centered design (HCD) methodology to elicit the barriers, facilitators, and co-created solutions associated with the diabetes technology journey from a multistakeholder group (youth with T1D, their caregivers, school providers, and the Children’s Hospital at Montefiore Einstein (CHAM) diabetes clinic providers) (17). With an interpretivist orientation, the study team aimed to explore caregivers’ individual emotions from their experience with the diabetes technology journey (18). This study followed Braun and Clarke’s thematic analysis framework (19). Standards for Reporting Qualitative Research (SRQR) was used as a guide for reporting (20).
Participants and Setting
Caregivers of youth aged 2-17 years old with T1D at CHAM in the Bronx, NY, were determined to be eligible for participation through review of their child’s electronic healthcare records. Caregivers were eligible if they were the legal guardian of a child identified as Black or Hispanic/Latino, had T1D for at least 6 months, and were using diabetes technology (CGM, insulin pump, or automated insulin delivery (AID) system). The caregiver was required to speak English and/or Spanish. Caregivers were excluded if their child had a developmental disability or was pregnant, as diabetes management differs for these conditions. IRB was approved by the Albert Einstein College of Medicine Office of Human Research Affairs (IRB 2022-14609).
The Study Team
The research team included two pediatric endocrinologists (CWC and MOR), a pediatric endocrinology fellow (AJD), two study coordinators at CHAM (MGM and SSL), and a psychologist (SCP). The research team has an extensive background in health services research, qualitative analysis, and type 1 clinical diabetes. All clinicians (CWC, AJD, SCP, and MOR) practice at CHAM and care for some of the participating families at the time of the study.
Procedure
Following routine diabetes clinic visits, informed consent was obtained from the caregivers of youth with T1D, either in person or by telephone, through convenience sampling. Assent was obtained from the youth, reflecting shared decision-making values pertinent to diabetes technology. The assent allowed caregivers to discuss the youth’s diabetes care and experiences with diabetes technology. The study coordinator contacted the consented caregivers and organized workshops. Each workshop required at least two participants, a maximum of five, and lasted approximately two hours. Participants received $100 in compensation for participating in workshops and completing the surveys.
Measures
Caregiver demographic and youth data
The self-reported survey completed by caregivers included their birthplace, sex, race/ethnicity, primary language spoken, employment status, the household’s highest level of education, household income, number of dependents, and marital status. Additional information regarding the child, including age, sex, diabetes duration, most recent HbA1c and type of health insurance (private versus public) was extracted from the electronic healthcare record.
Validated Surveys
The validated surveys below were selected to assess the correlation between the negative emotions caregivers reported during their diabetes technology journey with diabetes attitudes, diabetes-specific family conflict, and diabetes burden. Caregivers only completed the surveys once during the study period, after completing the workshop.
The Diabetes-Specific Attitude about Technology (DSAT) surveys adults’ perceptions of diabetes technology by considering five statements using a 5-point Likert scale, defining 1 as “strongly disagree” and 5 as “strongly agree.” Scores range from 5 to 25; a higher score indicates a more positive attitude towards diabetes technology (21).
The Problem Areas in Diabetes-Parent Revised (PAID-PR) survey assesses parental diabetes burden using 18 statements. The total possible scores range from 0 to 100 and follow a 5-point Likert scale, similar to the DSAT (22). A score of 56 or greater is an established cut-off point for a high diabetes burden(23).
The Updated Diabetes Family Conflict Scale (DFCS)-Parent Version has 15 statements to evaluate diabetes-specific family conflict between the caregiver and youth from the caregiver’s perspective. Responses are on a 3-point Likert scale, and total scores range from 0 to 100, with higher scores indicating greater family conflict. (24, 25).
Qualitative data from human-centered design workshops
During the virtual HCD workshops, caregivers were introduced to the diabetes technology journey framework, defined as: 1) learning about and deciding on technology, 2) getting and starting diabetes technology, and 3) managing problems and situations with diabetes technology (26). Of note, each multistakeholder group from the larger analysis remained in its own separate workshop (i.e., caregivers workshops, youth with T1D workshops, school clinicians workshops, and diabetes clinicians workshops).
Participants were encouraged to openly share their experiences, personal barriers, and facilitators associated with each step of the diabetes technology journey. A facilitation guide was utilized during the workshop to ensure uniformity across sessions (see Appendix) (17). Workshops were conducted by three of the authors (CWC, AJD, and MGM), allowing for diverse viewpoints. Only two of the three facilitators were present at each workshop. One study coordinator and one physician conducted the majority of the workshops. Otherwise, two physicians led the workshops. Workshops continued until thematic saturation was achieved (27).
Analysis
Quantitative
Descriptive data are presented as mean ± standard deviation for continuous variables and frequencies or proportions for categorical variables. Survey data are shown as mean ± standard deviation or median with 95% confidence intervals.
Qualitative
All workshops were recorded via a video conferencing platform, transcribed, and uploaded to NVivo® software (28). Transcripts were reviewed and edited alongside the recording for reliability. The study team followed Braun and Clarke’s six-phase thematic analysis framework (19). Given that the study aimed to understand the emotions caregivers experienced along the diabetes technology journey through an interpretivist orientation, the study team coded individual quotes. AJD, CWC, and MGM independently coded the transcripts. The transcripts were read several times to allow the coders to familiarize themselves with the data and resolve any ambiguities or discrepancies. To characterize the role emotional challenges plays in each step of diabetes technology journey, the study team queried additional codes related to “emotions” and “barriers to diabetes technology” from the larger qualitative analysis and mapped out the timing of emotional challenges as it relates to “learning about deciding on diabetes technology”, “getting and starting diabetes technology”, and “managing problems and situations with diabetes technology”. Afterwards, the study team ensured that each theme was consistent and distinct. Numerous meetings were held, and notes were taken to document the rationale for final decision-making. An audit trail was kept to track coding decisions (29). An unanimous agreement was ultimately reached, leading to the results.
Results
The cohort consisted of 23 caregivers, each participating in only one workshop. A total of nine workshops took place, with eight held in English and one in Spanish. The majority of caregivers were mothers (n=21, 91%); 64% (n=14) identified as Hispanic/Latino; and 61% (n=11) had a household income of ≤$50,000. Additional participant characteristics are summarized in Table 1.
Table 1.
Demographic Characteristics of Caregivers
| Participating Caregiver in Workshop (n=23) | ||
|---|---|---|
| Relationship to child (n=23) | Mother | 21 |
| Father | 1 | |
| Grandmother | 1 | |
|
| ||
| Participant Race/Ethnicity (n=22) | Black | 8 |
| Hispanic/Latino | 14 | |
|
| ||
| Participant preferred language at home (n=18) | English | 11 |
| Spanish | 7 | |
|
| ||
| Participant language spoken during workshop (n=23) | English | 19 |
| Spanish | 4 | |
|
| ||
| Household income (n=18) | ≤$50,000 | 11 |
| >$50,000 | 7 | |
|
| ||
| Highest level of education in household (n=19) | Some high school/high school | 9 |
| Bachelor’s degree | 8 | |
| Graduate degree | 2 | |
Quantitative
The DSAT survey was completed by 87% (n=20) of participants. The mean total score was 18.9±2.8. The median score was 19.5, with 95% of scores ranging from 17.6 to 20.2. Participants scored the highest (mean score 4.5) on the statement, “Diabetes technology has made my life easier”.
All participants completed the PAID-PR survey. The mean total survey score was 42.3±22.5. The median score was 43.8, with 95% of the scores ranging from 33.9 to 50.8. Twenty-two percent (n=5) of caregivers scored at or above 56 points, indicating severe diabetes burden.
The updated DFCS parent version survey was completed by 100% of participants. The mean survey score was 27.3±28.1. The median score was 16.7, with 95% of scores ranging from 15.2 to 39.5.
Qualitative
Figure 1 illustrates the emotional challenges caregivers of youth with T1D face as they navigate the diabetes technology journey. Additional quotes shared by participants, paired with each emotion theme, are presented in Table 2.
Figure 1. Caregivers’ Emotional Challenges Experienced Along the Diabetes Technology Journey.
The journey is circular, demonstrating that caregivers’ emotions are always subject to change.
Table 2.
Caregivers’ Emotional Challenges Throughout the Diabetes Technology Journey, Along with Relevant Quotes Associated With Each Step.
| Steps of the Diabetes Technology Journey | Emotions | Relevant Quotes |
|---|---|---|
| 1. Learning About and Deciding on Diabetes Technology | Fear of diabetes devices |
“There is a lot of information, and we are scared, because they are our children […] you don’t want anything to happen to them.”
“[…] I was minimizing maybe the severity of what was going on and what he might be needing to aid him, like in relation to the technology. I was […] feeling like, well, does he really need that [diabetes technology] and just kind of minimizing it? So that kinda got in my way […] just my own feelings.” “[…] times we are not open to learn. It’s like we don’t want to get on the train of the new stuff.” |
| 2. Getting and Starting Diabetes Technology | Anxiety over using devices correctly |
“And at first, […], when you do start using something new […] nerve wrecking.”
“But everything is so sensitive on those machines […] If you put one thing incorrect, you know your child could end up in the hospital. So everything has to be like, down to the T […]” “My child started using the pump […] he says it hurts a lot when you install it. […]” |
| 3. Managing Problems and Situations With Diabetes Technology | Frustrated with device alarms/visibility and technology troubleshooting |
“And I learned the hard way with the kids at school wearing the [CGM]. […] when it’s too high […] the alarm […] Starts beeping!
It was making my daughter […] nervous because she sees the […] reaction [of] the kids around her and also the teachers […] I see my daughter […] looking at me like I don’t like this.” “My own frustration sort of gets in the way sometimes […] I just need to […] take a breather and […] tackle the issue […] Me realizing that there’s a problem. I need to get to that point quicker […].” |
Learning About and Deciding on Diabetes Technology
- Theme: Fear of diabetes devices
Caregivers were afraid of making the wrong decision when choosing diabetes technology for their child. They were hesitant and believed technology might somehow harm the child. Some expressed that diabetes technology would make living with diabetes more challenging.
● “The fear of […] doing things right, whether we are making the best decisions for him and for myself. It’s mostly the fear when we have to do something that is related to our children.”
Some participants had preconceived notions that focused on the technology’s negative aspects.
● “I’m saying we were programmed to look at what […] could go wrong as opposed to what could be right and what could be positive about it […] Cause if something goes wrong, then it’s going to be giving him too much insulin when he doesn’t need it. […] So that definitely got in my way of totally embracing the technology.”
Getting and Starting Diabetes Technology
- Theme: Anxiety over using diabetes devices correctly
Caregivers were apprehensive when initiating the technology for the first time. They felt the need to check the devices to ensure they were working properly constantly.
● “First, at [the] beginning I thought that it was awesome, and then [with] time I start getting anxious [..]. Cause I didn’t […] know what to expect, and I was just looking at the phone and at the device and checking all my daughter’s devices. […] I want to make sure if it’s really telling me the right numbers.”
There were concerns that any errors with technology would harm the child and result in severe adverse events such as hospitalization.
● “I’ve had relatives who died just like that, their glucose goes down and that’s it. When you have relatives who have gone through that, you are very scared, because you think it may happen to your child. They were saying, put [the CGM] on him, and you’ll see that he’ll be fine […]. But diabetes is something […] to me it’s worse than cancer, because you get a glucose drop and that’s the end […]”
Some caregivers were also anxious when initially applying the devices to the child’s body, questioning their ability to place the technology properly.
● “But with the [insulin pump] I was kind of nervous because of you got to […] put it in his body […].”
Managing Problems and Situations With Diabetes Technology
- Theme: Frustrated with alarms/visibility and troubleshooting diabetes devices
While in public spaces, caregivers described how alarms and device visibility drew unwanted attention and ultimately distressed the child.
● “There are people I see who stare at him. You go to the beach in the summer I take off his shirt, and the device shows. And I notice that people stare at him, like, what is that? And [his] brother tells me…oh no, put a t-shirt on him. And I say, of course not, let him be like this.”
When technology failed or malfunctioned, caregivers expressed difficulties with troubleshooting. They believed they lacked the necessary skills to resolve the problem independently.
● “I guess for me dealing with a whole […] new device and that technology […] this is a whole new experience. […] we’re not knowledgeable about it. […] The problem might be so simple […], But since we don’t know anything about it […] it appears like a big deal…so you end up drowning in a cup of water, as you might say.”
Difficulties in obtaining additional supplies to replace malfunctioning technology, due to insurance or pharmacy barriers, add to this burden.
● “So I guess really just the waiting […] because there’s certain things that we can’t control. Wish we could just go like right to the pharmacy and then pick another sensor up, or […] get a new insulin pump the same day. […] And it’s not that easy. So, it’s definitely frustrating […] And there’s really not much you can do when the situation like that occurs.”
Discussion
The qualitative workshop study highlights the emotional challenges caregivers of Black and Hispanic/Latino youth with T1D may encounter along the 3-part diabetes technology journey and correlates with self-reported psychosocial surveys. While it is well known that psychosocial factors contribute to the optimal use of diabetes technology, providing behavioral health support for diabetes technology is not considered part of routine care (30). This study’s findings underscore the need for tailored behavioral health support for caregivers as they navigate the diabetes technology journey. The study also highlights emotional challenges that emerged as caregivers progressed through subsequent steps of the diabetes technology journey. Targeted interventions that mitigate these emotions in advance may enable caregivers to feel more comfortable using diabetes technology, ultimately leading to improved adoption.
Although caregivers expressed negative emotions during the workshops, they demonstrated low self-reported diabetes-specific family conflict, low parental diabetes burden, and a positive attitude towards diabetes technology. The study findings align with previous reports that diabetes devices decrease diabetes burden (31, 32). Surveys were administered at a single time point during the study to a group of caregivers of youth with T1D, encompassing a broad age range and varying diabetes duration. Further longitudinal research is needed to prospectively explore these psychosocial measures as caregivers navigate each step of the diabetes technology journey.
When caregivers learned about and decided on diabetes technology, they expressed mistrust in the devices, which led to fear. Additionally, some perceived the volume of information required to oversee the technology as overwhelming. Prior research supports the notion of parental fear when initiating diabetes devices to manage diabetes for Black teens (8). Despite the Food and Drug Administration’s 2016 approval of the non-adjunctive use of CGMs and the marked advancements in CGM technology, caregivers remain hesitant about diabetes devices (33, 34). Potential reasons for technology hesitancy may include a lack of familiarity or exposure to diabetes devices and mistrust in the medical system (8, 35). Ensuring caregivers are well-informed with personalized diabetes technology education could help reduce mistrust. A study focused on improving cancer screening among disadvantaged populations found that an intervention using trusted family members had the potential to reduce cancer disparities by mitigating medical mistrust (36). Therefore, peer mentoring for caregivers can also be an effective strategy to reduce emotional challenges associated with diabetes device use and has been successfully employed to support caregivers of youth with other chronic illnesses (37).
When getting and starting to use diabetes technology, caregivers reported anxiety about using the devices correctly. This study found that anxiety began after the initial placement of the devices on the child’s body and intensified with the thought of potential device malfunctions. Caregivers reported coping with anxiety by compulsively monitoring diabetes technology to ensure appropriate function. A retrospective chart review examining the most common reasons for CGM attrition found that system mistrust due to inaccurate readings was one of the main reasons for discontinuation (38). Anxiety regarding the accuracy of CGM and the function of an insulin pump should be addressed before device onboarding, as it may prevent diabetes device discontinuation or the development of maladaptive behaviors to cope with device malfunctions.
When managing technology-related problems and situations, caretakers reported frustration with device alarms and visibility. This frustration, if not appropriately regulated, can lead to high arousal and a sense of feeling extremely overwhelmed (39). These feelings can also lead to the discontinuation of diabetes devices. Over the last few years, exposure to diabetes devices in the media has increased. However, youth, especially from historically marginalized backgrounds, remain underrepresented in the media (40). Expanding media representation to include youth with T1D from diverse backgrounds may help increase the community’s awareness of and comfort with diabetes technology. Additionally, community outreach events can further educate the public about diabetes technology, helping to normalize device use.
Caregivers report frustration with inadequate knowledge to troubleshoot diabetes technology. They were also frustrated with navigating the complex healthcare system when replacements or refills were needed. Frustration with inadequate supplies or the inability to troubleshoot malfunctions may provoke discontinuation of the device. Consistent with prior research, Markov et al. reported CGM malfunction was the most common reason for interruption of CGM use in adults with diabetes (41). While not all device malfunctions can be addressed, reviewing common diabetes technology troubleshooting scenarios, creating solutions, and providing resources in advance can help caregivers gain autonomy and confidence.
There are several limitations to address in the presented study. First, the overall sample size was small, specifically for the Spanish-speaking caregivers. Second, the study only assessed the emotional challenges along the diabetes technology journey for caregivers of Black and Hispanic/Latino youth with T1D. Positive emotions may be associated with protective factors to predict the adoption and continuation of diabetes technology. Finally, the emotional challenges experienced by caregivers of youth with T1D were only evaluated for those utilizing technology.
Conclusion:
This is a novel study examining emotional challenges associated with the diabetes technology journey for caregivers of youth with T1D from historically marginalized communities. Future work should include more Spanish-speaking caregivers, as well as caregivers of youth with T1D who are not on diabetes technology or who have discontinued its use, as their barriers may differ. While barriers to device use are multifactorial, examining these emotions enables the development of individualized interventions to support optimal use of diabetes technology. These emotions may not be unique to caregivers with T1D, but caregivers of youth with other chronic illnesses may experience them when adapting to new therapies or treatments. Strategies need to be implemented to address the feelings of fear, anxiety, and frustration caregivers experience with diabetes technology while also managing their expectations to improve uptake and sustained use of diabetes technology.
Supplementary Material
Acknowledgement
The authors would like to thank all families for volunteering and sharing their lived experiences.
Conflict of Interest Statement
AD received grant funding by the American Diabetes Association to attend their 2025 American Diabetes Association Clinical Update Conference and Pediatric Endocrine Society to attend their 2025 Annual Meeting.
MR is a member of the Board of Directors for ALD Alliance and co-investigator for Biomarin vosoritide studies.
CWC is supported by NIDDK (DiabDocs) K12DK133995 and ADA CDTR-15.
The remaining authors have no conflicts of interest to declare.
Funding Sources
CWC is funded by the National Institutes of Health (NIH) (grant K12DK133995 and UL1 TR002556). The content is solely the authors’ responsibility and does not necessarily represent the official views of the NIH.
Abbreviations:
- T1D
type 1 diabetes
- BG
blood glucose
- CGM
continuous glucose monitor
- ADA
American Diabetes Association
- ISPAD
International Society of Pediatric and Adolescent Diabetes
- CHAM
Children’s Hospital at Montefiore Einstein
- AID
automated insulin delivery
- DSAT
Diabetes-Specific Attitude about Technology
- PAID-PR
Problem Areas in Diabetes-Parent Revised
- DFCS
Diabetes Family Conflict Scale
- HCD
human-centered design
- SRQR
Standards for Reporting Qualitative Research
Footnotes
Statement of Ethics
This is a sub-analysis of a larger study that received IRB approval from the Albert Einstein College of Medicine Office of Human Research Affairs (IRB 2022-14609).
Written informed consent was obtained from caregivers to participate in the study. Assent was obtained from the youth to allow their caregivers to share their personal experiences. Participants provided explicit consent and permission for their quotes to be published in the manuscript.
Data Availability Statement
All data analyzed during this research is included in this article. Further enquiries can be directed to the corresponding author.
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