Vinesha Ramasamy was 15 years old when she started noticing a lot of swelling and sharp pain in her left leg. The intense pain made it difficult to walk and almost impossible to go up and down stairs. Her family’s physician thought it was typical of adolescent muscle strains and Vinesha was told repeatedly to take pain relief and take it easy.
“Thankfully, an amazing teacher took notice,” says Vinesha. “She reached out to my parents and told them that my symptoms didn’t seem normal and strongly urged us to go back to the doctor and insist on an X-ray. When the family doctor got the results, he immediately referred us to an orthopedic surgeon. When the surgeon was going over the X-ray with my family, I stopped him and asked, ‘Do you think it’s malignant?’ He paused and said, ‘I think it might be, and that is what we are going to try to find out.’ My mom hesitated. She didn’t know what ‘malignant’ meant.”
Vinesha and her family arrived in Canada as refugees from Sri Lanka when she was a child. English was her parents’ second language and they had no social network to help them navigate the healthcare system. In that moment, Vinesha knew she was going to have to guide her parents through everything that was about to come next. Indeed, in the days, months and years that followed, she was the one taking notes and explaining everything to them.
Alyson Bierling is a recent graduate of McMaster University’s global health master’s program and a registered nurse in the pediatric hematology and oncology inpatient ward at McMaster Children’s Hospital. The Ramasamy family’s experience does not surprise her. At the 2021 POGO Symposium, she shared preliminary findings presented in abstract (summary) format on the challenges faced by immigrant families experiencing a diagnosis of childhood cancer.
“While a childhood cancer journey is arduous for any family, these families struggle in unique ways,” says Alyson. “Immigrant families are often left in the dark about the condition of their child due to language barriers, cultural needs often go unmet, and families grapple with a complicated and unfamiliar healthcare system that is structurally inequitable.”
In the early days after her diagnosis, Vinesha went through ten months of aggressive, high-dose chemotherapy with many complications and side effects. She was supported by POGO through the POGO Satellite Clinic at Credit Valley Hospital, allowing her to have some of her tests, monitoring in between chemotherapy cycles and hundreds of blood transfusions done closer to home.
“POGO also offered much-needed financial assistance for basic things like meals—without that, I know it would have been almost impossible for my parents to handle the responsibilities that come with parenting a child with cancer,” says Vinesha.
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Three days after her 16th birthday, she underwent surgery and was luckily spared from a leg amputation. However, because drastic amounts of muscle were removed and her leg was reconstructed internally with prosthetics, Vinesha was told she wouldn’t walk again and was given the slim hope that with a lot of physical rehabilitation, maybe, someday, she would progress to an assisted device.
“I was officially disabled,” she says. “My parents were working minimum wage jobs without any private insurance or financial coverage for physiotherapy or special equipment. Subsidized support would have greatly accelerated my recovery, but we weren’t aware of any available resources. Instead, I learned some exercises and spent the next twelve years doing a few minutes of daily physio in my bedroom with Velcro straps, an elastic band and some ankle weights. I can now walk with some challenges, but it is tragic for me to think about how that lack of specialized, focused physical therapy has affected the rest of my life.”
Alyson’s research confirms that families like the Ramasamys are often isolated and lack support to assist with their practical and emotional needs.
“Immigrant families face discrimination and often receive disparate care,” she says.
Her research sought to identify strategies that childhood cancer programs can implement to address these barriers.
“If we do not address them,” she adds, “the socio-cultural and systemic disadvantage already experienced by immigrant families will be further exacerbated. Addressing barriers may ease the demands placed on families and promote more equitable care for immigrant patients.”
Strategies for Addressing Barriers Faced by Immigrant Families from Alyson Bierling’s study titled Exploring the Challenges Faced by Immigrant Families Experiencing Childhood Cancer: A Scoping Review
- Address language barriers – Provide a specialized and consistent translator and do not use children as interpreters
- Bridge cultural differences – Use cultural interpretation services; acknowledge and validate alternative understandings of disease and approaches to care
- Facilitate connectivity and support – Provide peer-to-peer support programs for families who share similar linguistic and ethno-cultural backgrounds
- Confront discrimination – Make it a priority to eliminate disparate treatment of immigrant patients and engage in reflexive practice to acknowledge biases
- Meet practical needs – Identify families with financial and other needs and ensure they are prioritized for services
“Today, after also having survived a serious lung cancer recurrence, I am blessed to be monitored regularly for late effects at a POGO AfterCare Clinic in Toronto,” says Vinesha. “I am truly grateful to be alive, however, I know things could have turned out better for me and for many other survivors and families like mine. Many immigrants and refugees that come to this country have a ‘don’t-make-a-fuss’ mentality. They may be in survival mode or suffering from PTSD. It is essential for doctors and hospital staff to keep in mind that just because we are not persistently complaining it doesn’t mean we are fine; it could just mean we are not being asked the right questions.”
Vinesha Ramasamy is a two-time cancer survivor. She graduated from the University of Toronto with High Distinction at the top of her graduating class in commerce and finance, and currently works in global sustainability and corporate citizenship at a major financial institution. Her life revolves around contributing to various not-for-profit organizations in mentorship, advocacy, public speaking and striving for policy reform with the goal of equitable outcomes, healing, dignity and better lives for everyone, primarily marginalized groups. Vinesha spoke at the POGO AfterCare Education Day on May 14, 2021, where she shared her lived experience on intersectionality within the healthcare system with childhood cancer healthcare workers from across Ontario.
Alyson Bierling has been practicing as a registered nurse in the inpatient pediatric hematology/oncology unit at McMaster Children’s Hospital since 2019 and is currently working as an oncology nurse educator in Rwanda. She received her Bachelor of Science in Nursing at McMaster University in 2018 and went on to complete her Masters of Science in Global Health at McMaster University in 2021. Alyson’s research and clinical interests include health equity and refugee health. She leads a working group that focuses on improving care for culturally and linguistically diverse patients.