youth mental health strategy
about childhood rheumatic disease + mental health
Juvenile Arthritis (JA) and other rheumatic diseases affect 24,000 children in Canada – that’s every 3 in 1000 kids – putting them among the most common causes of chronic disability in children in Canada. Recent research, including Canadian-based studies, has aimed to determine just how many kids and adolescents seen in major pediatric rheumatology clinics had signs of depression or anxiety. The results have been sobering: up to 40% of youth with rheumatic disease suffer with significant mental health problems, including major depressive disorder, pain disorder, social phobia and anxiety.
The call is clear: more answers are needed to address the high prevalence of psychological distress, depression and anxiety symptoms in children and youth with rheumatic disease.
That is why Cassie + Friends (C+F) is thrilled to announce a new strategy aimed at transforming youth mental health in pediatric rheumatic diseases over the next 2 to 3 years, along with a $500,000 fundraising campaign to support the initial execution and further development of this strategy.
“This investment and C+F’s leadership are desperately needed,” says C+F Board Chair, David Porte. “Children and teens with rheumatic diseases endure medication after medication, thousands of injections, hundreds of medical appointments, lots and lots of tears and pain, and challenge after challenge. The constant pain, the pressures of adolescent and young adult life, the inability to keep up with their peers, and the always being ‘the one with the disease’ can drain these kids at a time in their life when they should be most vibrant and active.”
our strategy
The first phase of C+F’s Youth Mental Health Strategy includes three major initiatives:
Initiative #1
Launch of a Canada-wide Youth Mentorship Program to provide immediate, front-line support for affected children, youth, and young adults from trained peer mentors. The program is backed by the proven iPeer2Peer training program developed by researchers at the Hospital for Sick Children and will be hosted on a safe and secure online platform, made possible by through an innovative partnership with Jane App.
Initiative #2
An unprecedented research partnership with Brain Canada focused exclusively on youth mental health in pediatric rheumatic disease. With a total funding envelope of $480,000, the partnership will support two team grants of $240,000 each over two years with an aim to fund research that will improve our understanding of the prevention, diagnosis, and treatment of mental illnesses in children and youth.
Initiative #3
Formation of a National Pediatric Rheumatology Mental Health Workgroup that will bring together diverse and unique perspectives to address gaps in mental health care for children with rheumatic diseases in Canada by developing strategies to improve research, care and outcomes for youth.
join us in making a change
With the help of our donors, affected families and initial partners like Brain Canada, Cassie + Friends continues to work with determination and unwavering commitment to ensure pediatric rheumatic diseases are recognized and resourced as a priority threat to children’s health and futures. With our hand-in-hand relationship with pediatric rheumatology care providers and the work of our CREW (the Cassie + Friends Care and Research Network), we are well positioned to lead the way to transformative change for kids and families when it comes to achieving the pain-free futures kids’ deserve.
To learn more about partnering with Cassie + Friends and get more details about our Youth Mental Health Strategy, or to share your story about the impact of childhood rheumatic disease on your mental well-being, please contact us at info@cassieandfriends.ca
community testimonials
“Chronic illness, especially at a young age, can be very isolating. Throughout my years of school, I often felt left out or excluded when I couldn’t participate in gym class or extracurriculars because my pain was too bad that day, or when I had to miss events or field trips to go to doctor’s appointments. From personal experience, I know I would get so much anxiety at the thought of having to ask for extra help or time or to remind a teacher of my accommodation. So much so that I frequently pushed through bad pain days with no accommodation out of fear of being denied it. That had a big impact on my mental health. Whether you live with a rheumatic disease or not, it’s no secret that if you physically feel bad, you mentally feel bad, or vice versa – and even more so for people who already live with physical pain every day. You really can’t treat one without treating the other.”
Emily Bessey, Halifax, Nova Scotia
“I am so happy to hear about Cassie + Friends’ commitment to transforming mental health services for kids with JIA. I think with every diagnosis should come an automatic appointment with a mental health specialist to either help and support caregivers and/or the patients. My son – being an active 11-year when he was diagnosed – could have really used the support and still could.”
“Given the high prevalence of mental health conditions in kids and teens with chronic rheumatic disease, it is so important for the pediatric rheumatology community to better understand possible predictors and ideal management strategies for our patients. As Division Head of the Pediatric Rheumatology program at McMaster Children’s Hospital and Chair of the Cassie + Friends’ Research Advisory Committee, I am very proud of this new partnership with Brain Canada that will inspire collaborative research and a multi-faceted approach to better address many unanswered questions around mental health and rheumatic diseases, and improve the care we provide.”Dr. Michelle Batthish, Head, Division of Rheumatology, Department of Pediatrics, McMaster Children’s Hospital; Associate Professor, McMaster University; Chair, Cassie + Friends Research Advisory Committee.
“As a clinician-Investigator committed to improving mental health and overall outcomes for pediatric patients with rheumatologic disease, I know how common and distressing these challenges can be in affected youth. When mental health suffers, overall health also suffers. Yet mental health needs are currently not well-addressed for these children and their families in Canada. This is why I am so excited about the mental health initiatives by Cassie+Friends that will provide a real framework and significant funding for the pediatric rheumatology community to help address these needs. Importantly, the new working group will be co-led by clinician-researchers and patient/caregiver partners to ensure the work is relevant and impactful for youth and their families.”Dr. Andrea Knight, Canada Research Chair in Mental Health + Chronic Disease of Childhood; Staff Physician, Division of Rheumatology, The Hospital for Sick Children; Associate Scientist, Neurosciences & Mental Health Program, SickKids Research Institute
“We are proud to partner with Cassie + Friends to support this important research initiative. This partnership aligns with our commitment to fund innovative research that has the potential to make a real impact on the lives of Canadians living with neurological and mental health conditions.”Dr. Viviane Poupon, President, and CEO of Brain Canada
mental health resources for the whole family
Mental Health Impacts the Entire Family!
Anxiety, depression, traumatic stress, trouble sleeping and lower quality of life – these are just some of the ways you, your family and your child’s mental health might be impacted when navigating life with a chronic disease.
Caregivers also report lower quality of life and increased emotional distress not to mention the financial burden and added stress of lost time from work due to attending medical appointments, staying home with your sick child and more. Siblings are also potentially vulnerable to emotional distress and decreased well-being.
Though this is a daunting and often overwhelming aspect of life with pediatric rheumatic disease, there are many resources to turn to throughout your journey. And we hope you take comfort in knowing that the Cassie + Friends community is here to help.
