New research led by Dr. Carly Whitmore and colleagues’ highlights young adults’ desire for diabetes care that looks beyond glucose measures and recognize the ongoing emotional labour of living with type 1 diabetes.

Diabetes care is about more than the numbers

HbA1c, time in range and other clinical measures are essential to managing type 1 diabetes. But for young adults living with the condition, those numbers do not always tell the full story of how they are doing.

A new study published in Primary Care Diabetes found that young adults often experienced healthcare encounters as being heavily focused on glucose measures, with few opportunities to discuss mental health, relationships, or the day-to-day realities of living with type 1 diabetes.

Some participants described feeling reduced to “a set of data points.” Others recalled times when they were congratulated for meeting clinical targets even while struggling with burnout or their mental health.

The findings point to an opportunity to bring physical and emotional health together in routine diabetes care, particularly during young adulthood, when people are often taking on greater responsibility for managing their diabetes while navigating significant changes in their lives.

📖 Read the full paper here

Listening to young adults living with type 1 diabetes

The research team interviewed 19 young adults between the ages of 18 and 29 as part of a larger project developing a technology-enabled mental health intervention (TECC-T1D3) for young adults with type 1 diabetes and diabetes distress.

Diabetes distress describes the emotional burden associated with living with and managing diabetes. In this study, all 19 participants experienced moderate or high emotional burden, and 17 of the 19 had overall diabetes distress scores in the moderate or high range.

Their interviews revealed two consistent themes.

First, participants described healthcare encounters in which clinical measures often received greater emphasis than on their broader wellbeing. They understood why measures such as HbA1c and time in range matter, but wanted those conversations balanced with questions about how diabetes was affecting their mental health and day to day lives.

As one participant explained:

“I think that I should have been asked how I was doing and what that number meant to me.”

Second, participants described diabetes distress as part of the everyday experience of living with type 1 diabetes, rather than something that only appears during periods of acute difficulty.

The constant thinking, planning, adjusting and decision-making required to manage diabetes could become so familiar that participants did not always identify what they were experiencing as “distress.” They nevertheless described the emotional work involved and a desire for their efforts to be recognized.

Bringing lived experience into the research

Patient partnership was built into the larger research project through a seven-member Partner Advisory Council (PAC) of young adults with lived experience of type 1 diabetes. PAC members contributed throughout the research process, including project planning, recruitment, development of the interview guide, interpretation of the findings and identification of the themes that ultimately shaped the paper.

Their involvement also influenced an important decision about who could participate. Rather than requiring young adults to first meet a clinical threshold for diabetes distress or another mental health challenge, the research team, in consultation with the PAC, recognized that emotional challenges can be part of the experience of living with type 1 diabetes and did not make a positive distress screen a requirement for participation.

The researchers describe collaboration with people with lived experience as particularly important in challenging their own interpretations and assumptions. Ongoing discussion with the PAC helped ensure the findings remained grounded in what participants were actually saying about their lives.

Diabetes Action Canada supported the work of the PAC and the patient partnership underpinning this research, providing ongoing support and facilitation to help bring lived experience into the research process. DAC team members Linxi Mytkolli, Jasmine Maghera, Natalie Mangialard, Alex St. John and Tracy McQuire are co-authors of the publication.

What this could mean for diabetes care

The findings are not an argument for moving away from HbA1c, time in range, or other clinical measures. These remain important tools for managing diabetes and reducing the risk of complications.

Instead, the research identifies a need for greater balance.

Young adults wanted healthcare encounters that recognized both their clinical outcomes and the effort required to achieve them. That could mean asking about emotional wellbeing, recognizing strategies people are already using to cope and adapt, and creating opportunities to discuss what living well with diabetes means to the individual.

These findings do not suggest that healthcare professionals are unaware of these challenges. Instead, they raise questions about whether current models of diabetes care consistently provide the time, resources, and pathways needed to address them. The researchers emphasize that these findings should not be interpreted as a critique of individual healthcare professionals who are often working within limited appointment times, clinical guidelines, and broader health-system pressures. Improving care therefore cannot simply mean asking individual providers to do more. Instead, it will require systems that make space for emotional wellbeing as part of diabetes care.

Looking ahead

These findings emerged from the broader Technology-Enabled Collaborative Care for young adults living with type 1 diabetes and diabetes distress project, which is co-designing a structured mental health intervention with healthcare providers, researchers and people with lived experience.

The study also points to opportunities to better equip healthcare teams and systems to recognize and respond to the emotional realities of diabetes. The authors identify training in areas such as relationship-centred communication, motivational interviewing and trauma- and violence-informed care, alongside models of care, referral pathways, and resources that enable healthcare professionals to respond when emotional needs are identified.

Continued engagement with the PAC will also be important as the research moves forward, including efforts to reach young adults whose experiences were underrepresented in this study.

For young adults living with type 1 diabetes, better care does not mean choosing between good clinical care and emotional wellbeing. The opportunity is to build care that recognizes both.