Recognizing Mental Health Awareness Month 

May is Mental Health Awareness month, a national movement to raise awareness of the importance of mental health, and the structural gaps that exist in accessing treatment and support. 

There is no physical health without mental health. JDRF has long recognized the need to prioritize both – particularly as it relates to our mission to improve the lives of people living with type 1 diabetes (T1D).   

T1D affects a person’s emotional, social, and mental wellbeing throughout their lifetime, known collectively as psychosocial health. Psychosocial health is directly related to physical health, and to health outcomes like glycemic control in T1D. JDRF’s Mental Health Strategy, launched in 2021, aims to better support this critical need that has long been underappreciated and undertreated in people with T1D. 

T1D is a lifelong disease that involves constant blood glucose monitoring, counting carbs, fear of T1D related complications, and taking insulin every day just to stay alive. The stress around diabetes management can manifest in depression, anxiety, and “diabetes distress” – a term describing the powerlessness, stress, guilt, relentless worry and denial that accompanies living with diabetes and the burden of self-care.

But for too long, healthcare practitioners almost exclusively focused on the physical aspects of T1D without addressing mental health. T1D can also be an isolating condition, and many living with it don’t have appropriate social or community support. 

It is for this reason that JDRF Canada developed a three-pronged approach to its mental health strategy:

Why it matters so much:

I was diagnosed with type 1 diabetes when I was ten years old, and now I’m 19. Even after nine years of living with this disease, I still have daily challenges and struggles. However, I wouldn’t be who I am today without my battle with type 1. I just completed my first year at UBC to gain a bachelor’s degree in psychology. My dream is to become a psychologist for children with chronic illnesses. I believe my personal experience as a child with a chronic illness could benefit and support others in similar situations. I’m so thankful for the inspiring donors who support JDRF, which is working hard to find a cure for all of us affected by T1D. –Shay, diagnosed at age 10

Research Update

The Mental Health + Diabetes Training Program: Preparing a new generation of providers

Dr. Tricia Tang and her team at UBC will also evaluate our model to train the next generation of clinical counsellors, clinical psychologists, and social workers to connect with and work effectively with the diabetes patient population across Canada and to access and navigate the Mental Health + Diabetes Directory.

This study will help to understand the impact of the Mental Health + Diabetes Training Program by carefully compiling evidence-based outcomes and feedback from mental health providers and their patients.

JDRF Canada – Brain Canada Addressing Mental Health in Type 1 Diabetes Team Grants
A randomized controlled trial of the REACHOUT intervention

Dr. Tricia Tang, University of British Columbia (UBC)

Dr. Tang and her team at UBC are using a virtual care platform to deliver peer-led mental health support to adults and youth with T1D in rural BC through a mobile app called REACHOUT. After hosting focus groups last year, the team redesigned the REACHOUT app to better meet the needs of the community. More than 75 Peer Supporters (i.e., adults with type 1 diabetes trained to deliver mental health support to others with type 1 diabetes) were recruited to support the REACHOUT intervention.

Teaching adolescents with T1D self-compassion to reduce diabetes distress

Dr. Marie-Eve Robinson, Children’s Hospital of Eastern Ontario (CHEO)

Dr. Robinson and her team are testing the effectiveness of a mindful self-compassion program on improving diabetes distress, anxiety, depression, diabetes-related disordered eating, and suicidal ideation experienced by youth aged 12-17 years with T1D. The program focuses on teaching self-kindness, mindfulness, and the idea that negative experiences are not personal failures, but part of the common human experience. Study recruitment began in October 2022 and was completed in March 2023, with 141 participants enrolling. The first results are expected in June 2024. The study methodology was published in JMIR Research Protocols.

Technology-enabled comprehensive care for young adults experiencing diabetes distress 

Dr. Peter Selby, The Centre for Addiction and Mental Health (CAMH) 

Dr. Selby and his team are bringing experts in mental health and T1D care together with those who have lived experience of T1D to co-develop a tech-based solution for diabetes distress for adults between the ages of 18 and 29, a group disproportionately vulnerable to diabetes distress.

JDRF-CIHR Mental Health Grants

Supporting youth with T1D during transition from pediatric to adult diabetes care

Dr. Sonia Butalia, University of Calgary

Dr. Butalia and her team are researching the transition from pediatric to adult diabetes care – a crucial and tenuous time for many living with T1D. Dr. Butalia completed a successful pilot intervention that supports teens through texts, emails, phone calls, and social media groups, which saw improved blood glucose levels among those involved in the program. Currently, she is expanding the program to five sites in Alberta and evaluating its impact on participants’ mental health and diabetes management. Her team is also designing a free toolkit for other locations to implement the program.

Adaptation and pilot evaluation of a digital intervention before and during pregnancy 

Dr. Deborah Da Costa, McGill University 

Diabetes-specific distress and poor mental health during the preconception and pregnancy period can adversely impact mother and baby health, yet research in this field has not been prioritized, and limited interventions exist. Dr. Da Costa and her team previously developed a successful digital intervention for pregnant, birthing, and postpartum women. They will now use the JDRF-CIHR grant to collaborate with diabetes experts – primarily those living with T1D and T2D – to adapt their platform for women with pregestational diabetes. 

Peer mentorship to increase physical activity and quality of life in adolescents with T1D  

Dr. Jonathan McGavock, University of Manitoba 

Though physical activity is a crucial component of T1D management, essential for optimal quality of life, and a significant factor in mental health, daily physical activity levels remain low in adolescents with T1D. Dr. McGavock and his team are conducting a 12-week program of group-based exercise led by mentors with T1D living healthy, active lifestyles. This program will seek to impart to the participants a sense of mastery, relatedness, and connection with peers, and a sense of autonomy to improve their quality of life through healthy, active lifestyles. 

Find Your CommuniT1D: Customized Virtual Peer Support for People Living with T1D   

Dr. Holly Witteman, Université Laval 

Dr. Witteman and her team are creating a virtual peer support program and community led by people with T1D and with support from research team members who bring expertise in mental health, diabetes care, psychology, and social support. This program will consist of small group meetings intended to connect people with T1D and their caregivers based on their individual characteristics, hobbies, interests, language requirements, etc., while continuously adapting to the community’s needs. The research focuses on the feasibility and acceptability of the program as well as its impact on diabetes distress, quality of life, well-being, diabetes management, and use of resources.

Training Mental Health Providers 

JDRF Canada and Diabetes Canada collaborated to launch the Mental Health + Diabetes Training Program in English and French in March 2023. The course consists of two streams: one for mental health providers in Canada – including registered psychologists, clinical counsellors, psychotherapists, social workers, psychiatrists, and mental health nurses – and one for the diabetes community and healthcare providers, caregivers, family members, friends, and anyone who wishes to take the general stream of the course.

Despite the large number of people living with the condition, only a handful of mental health providers in Canada have in depth knowledge of the unique psychosocial challenges that come with living with diabetes. The goal of the Mental Health + Diabetes Training Program is to prepare mental health providers to have sufficient knowledge and skills to assess and treat their patients living with type 1 or type 2 diabetes.

Training Program and Directory Stats

(as of April 2024)

  • 557 mental health providers enrolled in the program
  • 873 others (people with T1D, family members, etc.) enrolled in the program
  • 124 mental health providers approved to be listed in the directory
  • Approved as a sponsor of continuing education for psychologists by the Canadian Psychological Association, valid for 10 credits
  • Approved by the Order of Social Workers, Family, and Marriage Therapists of Quebec (Ordre des travailleurs sociaux et des thérapeutes conjugaux et familiaux du Québec) and the Ordre des Psychologues du Québec to provide continuing education to their members

As a contributor to JDRF’s Mental Health + Diabetes Training Program, Lujane shared experiences that impacted her mental health, which highlight gaps in care:

“One night, I was experiencing some troubling symptoms with my T1D and called the endocrinologist on-call at the hospital to ask what I should do. He immediately advised me to go to the hospital. When I went in, the ER doctor looked agitated and tired and questioned why I even came that night. This experience was both positive and negative. I had one physician who cared for my health and listened, and I had another physician who didn’t listen and who made me feel shame.

There is a disconnect in the healthcare system, and people with diabetes often fall between the cracks by being told to take their health seriously and having the onus put on them to make good choices, but at the same time, not having that seriousness and care shown to them. Experiencing this disconnect, on top-of the 24/7 self-management of T1D and fear of complications, takes a toll on your mental health.” –Lujane, diagnosed at age 18

Mental Health + Diabetes Directory

Mental health providers who complete the Training Program can apply to be listed in our bilingual, publicly accessible Mental Health + Diabetes Directory, allowing healthcare providers and people living with diabetes to be referred or self-refer to trained providers who can offer specialized support to youth and adults living with diabetes.

As of April 2024, 124 mental health providers are accepting new clients via our Mental Health + Diabetes Directory across Canada, including Vancouver-based Clinical Counsellor Shalet Rosario, who shares:

“I’ve walked the path of type 1 diabetes since I was 12 years old, and I intimately understand the ups and downs that come with it. I’ve faced the unique challenges and triumphs of this journey, and I’m here to lend an understanding ear and a helping hand to individuals, couples, and families affected by diabetes and who grapple with diabetes-related burnout, psychological trauma, depression, and anxiety.”

Engagement, Education and Support

Our mental health strategy’s engagement, education and support activities focus on health care providers as well as people who live with T1D and their families and caregivers.

Donor funding helps us produce new educational materials for healthcare providers and the T1D community that cover the mental health aspects of diabetes. These include electronic briefs, webinars and events, a dedicated hub on our website, and promotion of the Mental Health + Diabetes Directory among healthcare providers as a referral source for their patients.

Let’s Talk T1D Education Series

A Let’s Talk T1D Education Series webinar on mental health was held in English and French in May 2023 with the aim that it become an annual event to promote Mental Health Awareness Month. There is a second Education Series on Diabetes and Mental Health featuring mental health providers that specialize in diabetes with Dr. Michael Vallis and Zosia Anders, taking place on May 30, 2024, along with future plans for a webinar on disordered eating and T1D.

Raising Awareness about T1D and

Disordered Eating

In December 2023, we co-hosted a webinar about T1D and Disordered Eating in partnership with the National Eating Disorder Information Centre (NEDIC). More than 500 healthcare providers nationwide and beyond signed up for the English webinar and 80 for the French webinar, highlighting the gaps in knowledge that exist among healthcare providers.

Aude Bandini bravely shared her experience with T1D and bulimia. She went into diabetes ketoacidosis (DKA, a potential life-threatening condition when blood glucose levels are dangerously high) when she was 17, and it wasn’t until age 36 that she noticed her healthcare professionals were finally starting to acknowledge the mental health impacts of T1D.

“Most of the time, I left the physician’s office crying,” Aude shared. “With my diabetes team, the approach was exclusively focused on numbers and glycemic control. I think they thought that through punishment and threats and guilt, I would behave, and of course, it did not work that way.”

Mental Health and T1D Community Grants

As part of JDRF Canada’s Mental Health Strategy for T1D and a key fundraising pillar of the $100M Campaign to Accelerate, in May 2023 we opened the JDRF Canada Mental Health and T1D Community Grants Program as a new funding opportunity. This incubator initiative is designed to provide seed funding to organizations ready to transform innovative ideas into successful projects to support the mental health and wellness of the T1D community.

Each project was awarded up to $20,000 and will be up to 18 months long, supporting: 

  • The addition of mental health content to established programming for adults with T1D 
  • A virtual mental health training program in Edmonton for people living with T1D
  • A bilingual webcomic focused on psychosocial issues for children aged 7-12 newly diagnosed with T1D 
  • A French video series that educates and combats stigma around mental health and T1D
  • In-person programming for people with T1D of all ages at a busy community health centre 

Partnerships are a crucial component of JDRF Canada’s Mental Health Strategy, and we are proud to be partnering with a variety of organizations across Canada to support these new community projects and expand the capacity and diversity of supports for mental health and well-being in the T1D community. Read more about the projects here: https://breakthrought1d.ca/jdrf-canada-announces-new-projects-supported-by-the-mental-health-and-t1d-community-grants/

What’s next?

With our Mental Health Advisory Council’s input, we will continue to expand our mental health website content, build awareness of our Mental Health + Diabetes Directory so individuals feel empowered to self-refer, and develop new approaches to further educate and connect the community.

JDRF Canada extends our gratitude for the support of our Advisory Council, Cabinet Members and philanthropic partners, including charitable partners Brain Canada and Diabetes Canada.

New funding investments and partnerships are still needed as we go forward. For more information, please email Jen Bavli at jbavli@jdrf.ca.

Looking for more information on available mental health support? Visit our Mental Health + Diabetes Directory  to connect with a mental health provider or visit our website for more information.

The BETTER project: JDRF reaffirms its commitment to enhancing the quality of life for individuals with type 1 diabetes

The BETTER project, a Canadian research initiative, gets a boost from renewed JDRF funding. Bringing together patient partners – people living, or with a child living, with type 1 diabetes (T1D) – researchers, healthcare professionals and policymakers, this project aims to improve the lives of people living by T1D in Canada.

Initially funded by the Canadian Institutes of Health Research (CIHR) and JDRF until 2024, the BETTER project has received extended support from JDRF for an additional three years. This renewed funding acknowledges the project’s significant impact, and will enable the team to continue advancing research and innovation in the field of T1D.

In addition to this charitable monetary support, the project also benefits from donations from both industry and individuals, which provides a solid foundation for achieving its ambitious goals.

What is the BETTER project?

The BETTER research project stands out by the involvement of people living with T1D. By working closely with patient partners, the BETTER team members actively integrate the perspectives and needs of these individuals into all facets of their work related to T1D. This approach ensures that the project remains grounded in the lived experiences of those directly affected by T1D, and enables efforts to be directed towards truly effective and relevant solutions in order to improve care and optimize the use of treatments and technologies.  

The project has 2 main focuses:

  • A Canadian registry of people living with T1D, called the BETTER registry, in which people living with T1D (or LADA for Latent Autoimmune Diabetes in Adults) – or who have a child living with T1D – can share their experience through online questionnaires in order to enrich research and knowledge about T1D. 
  • An online self-training platform, called Support, offering easy access to educational resources and practical tools to better manage T1D on a daily basis.

In addition to these main fields of activity, the project also undertakes clinical research and has setup a biobank (a collection of human biological samples and clinical data used for medical research) to further knowledge about T1D.

A success story

Since its launch in 2019, the project has achieved several significant successes. 

The registry currently has over 4,200 participants nationwide, providing valuable data to inform the scientific community and policymakers about the realities of T1D and its critical needs (e.g., the need for improved access to treatments and technologies). The data collected to date has enabled over 14 studies to be carried out to better understand the reality of T1D, exploring aspects such as the impact of socio-economic status, the burden of hypoglycemia, the use of technologies, and the stigma associated with this condition, to name but a few.

The Support platform has evolved over time to provide a content and a navigation experience tailored to adults and young people (aged 14 to 24) living with T1D, as well as to healthcare professionals. This platform, now recognized for its effectiveness in improving self-management among adults living with T1D and building the confidence of healthcare professionals, is a prime resource for education and training on T1D in Canada.

Moreover, the BETTER team has also succeeded in establishing provincial, national and international collaborations, thereby strengthening the project’s impact and scope in the field of T1D research and helping to train the next generation of researchers and healthcare professionals.

New funding for the future 

With this new funding from JDRF, the BETTER project is resolutely looking to the future. Priority objectives include expanding the number of participants and improving representativeness within the registry to better reflect the diversity of people affected by T1D in Canada. Future research will explore a wide range of aspects of living with T1D, and project members are committed to strengthening the promotion and transfer of knowledge to improve T1D care across the country. In addition, they aspire to make the Support e-learning platform a must-have reference for education and training on T1D.

The BETTER team is more than ever committed to continuing its efforts to improve life with T1D, and encourages anyone interested in learning more or joining the registry to visit www.type1better.com.

Recognizing the incredible JDRF Canada volunteers

National Volunteer Week takes place from April 14 – 20, 2024, as organizations across the country celebrate those who generously donate their time and talents to their community. 

The National Volunteer Week theme for 2024 is Every Moment Matters! This theme highlights the importance of every volunteer and each contribution they make at a moment when we need support more than ever.

JDRF is recognizing 50 years in Canada this year, and this theme could not be more appropriate. We were started by a group of devoted parents determined to find a cure for their children living with type 1 diabetes (T1D), and their efforts each and every moment has led to monumental progress in the management of T1D and have brought us closer to cures for this disease.

Our foundations lay in grassroots fundraising, led by our devoted volunteers. For the past two years, we have been so pleased to celebrate this passion for our T1D community through our Annual Volunteer Awards.

In 2023 we were thrilled to recognize individuals, volunteer committees and corporate organizations who have demonstrated incredible commitment, devotion and heart in supporting our collective goal of a world one day free from T1D.

Congratulations to all our Award Winners. To read more about them, please visit: https://www.flipsnack.com/jdrfaccelerate/nvw_2024_flipsnack_english/full-view.html

2023 JDRF Volunteer Awards

Peter Oliver Award for Volunteer Impact

National Volunteer of the Year

National Committee of the Year

National Advocate of the Year

National Fundraising Volunteer of the Year

National Corporate Partner of the Year

National Rookie Volunteer of the Year

National Youth Leader of the Year

Local Impact: Community Volunteers of the Year

Local Impact: Ambassador of the Year

Local Impact:  Business Partner of the Year