In recognition of Breast Cancer Awareness Month 2024, we are highlighting a variety of initiatives at Women’s College Hospital and beyond, aimed at raising awareness and offering comprehensive information on breast cancer prevention, treatment and aftercare.
Many individuals with intellectual and developmental disabilities (IDD) face significant barriers in accessing and understanding breast health information. Research indicates that people with IDD are less likely to undergo routine breast cancer screenings compared to those without disabilities, leading to delayed diagnoses and more advanced stages of breast cancer.
To address this problem, the Peter Gilgan Centre for Women’s Cancers at WCH partnered with the Health Care Access Research and Developmental Disabilities program (H-CARDD) at CAMH to provide breast health education to athletes with IDD during the Special Olympics Ontario 2024 Provincial Spring Games, hosted in the Waterloo Region.
“While the reasons for this inequity are multifaceted, improving access to breast awareness education is one way that we can help reduce this health inequity,” shares Camille Williams, Innovation, Spread and Scale Lead at the Peter Gilgan Centre for Women’s Cancers at WCH, who was one of the leads for the project.
“Being breast aware is important for all of us, but the information is not tailored to the needs of individuals with IDD, which is why this collaboration is so important.”
During the initial planning stage, it became clear that there was a pressing need for breast health resources specifically tailored to individuals with IDD.
As a result, a new resource was developed in collaboration with H-CARDD at CAMH, titled Be Breast Aware. This easy-to-understand brochure uses clear visualizations, making the information more accessible for people with IDD. The main message was conveyed through an acronym, SOFT:
- S – Select a bra that fits
- O – Observe/see any changes
- F – Can you feel anything?
- T – Tell someone
“The H-CARDD program is all about partnerships to improve healthcare for people with IDD,” says Dr. Yona Lunsky, Scientific Director at the Azrieli Adult Neurodevelopmental Centre at CAMH, which leads the H-CARDD program, “We work closely with people with lived experience to translate information so that everyone can understand it.”
This consultation ensured the resource was truly responsive to the unique needs and challenges of those with IDD.
“Dr. Lunsky and her team brought a wealth of experience,” adds Williams. “We are grateful for their collaboration on this work.”
Be Breast Aware was shared at the Centre’s booth at the games, along with breast models and breast lump models to enhance visual understanding. Athletes, families and coaches at the games came by the booth and engaged in thoughtful discussions on breast health, and were provided the brochures to take home.
The Be Breast Aware resource was well received by athletes, family members and coaches. To evaluate the impact of the program, the athletes were asked “what is one thing you can take away from speaking to us?” and athletes responded verbally with what they had learned. This approach was selected and executed thoughtfully as surveys and multiple-choice questions are often an inaccessible method of evaluation for those with IDD.
The Peter Gilgan Centre for Women’s Cancers continues to search for new avenues to address health inequities, giving every woman every chance to access the highest standard of cancer care.
View the Be Breast Aware brochure here: