When youths drive pediatric cancer research
Cancer is a leading cause of death in children and adolescents. In Canada, 10,000 children are living with cancer and 4 new cases are diagnosed every day. Significant research efforts are led by adults on pediatric cancer. However, academic researchers cannot tackle these challenges alone.
What are the dreams and aspirations of young people living with cancer? How can the enthusiasm, knowledge, experience, new ideas and strengths of young people living with cancer be mobilized to advance science? This participatory research project aims to put young people “in the driver’s seat” of pediatric cancer research, to address the following pragmatic, scientific and educational goals:
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- Research for Action: Support three research projects led by youth living with cancer based on objectives set by the youth themselves;
- Research for Science: Advance knowledge on inclusive youth engagement in pediatric research;
- Research for Education: Support capacity-building on youth engagement in pediatric research.
This project is conducted in collaboration with ACCESS, Leucan, Helena’s Hope and the Canadian Institutes of Health Research.
Young researchers
ADELA
Adela has been living with cancer since she was 5 years old. Today, she is in remission and plays alto saxophone in a music concentration program. She speaks three languages and loves to communicate.
She joined the research team as a young co-researcher to share her experiences, her vision and to listen to others.
JACOB
Jacob is a cancer survivor. He has battled the unthinkable and with each setback, has become a stronger beacon for others. He is a positive and committed leader in his community. He always gives his best and stands up for children battling terminal illnesses.
He has joined the research team as a young co-researcher to continue to speak out and improve the overall experience of children with cancer.
ANOUSHKA
My name is Anoushka Mabika, I am 18 years old and I come from the Democratic Republic of Congo. I lost my sight due to a brain tumor at the age of 13. I love music, I sing and play the guitar.
You can be a scientist too
ACCESS Annual General Meeting
Youth Belong at the Heart of Pediatric Cancer Research
Anoushka and Jacob talk to ACCESS about the importance of involving young people in research, reminding us that their experiences provide a unique perspective for shaping more humane and meaningful care.
Toolbox for participatory projects with young people
As part of this project, we have brought together a selection of resources for teams wishing to start participatory projects with young people.
This toolkit serves as an introduction to this approach, providing methodological guidelines, practical guides, and concrete examples.
