Grant: Operating Grant

Brain tumours are one of the most common forms of childhood cancer. While medical advances have resulted in improved survival rates, survivors can experience physical, psychological or social late-effects. The late-effects associated with survival from childhood brain tumours five years post-treatment and beyond can have a detrimental effect on the quality of life (QOL) for survivors and their families. To better meet their needs, we first need research that provides survivors of childhood brain tumours and their families the opportunity to describe, in their own words, what it is like to live with and manage the late-effects associated with survival from five years post-treatment and beyond into adolescence and adulthood. This study aims to increase our understanding of the experiences of survivors of childhood brain tumours and their families from five years post-treatment and beyond into adolescence and adulthood, with the intent to enhance health care services and supports and QOL for survivors of childhood brain tumours and their families. Fifteen to twenty survivors and their families will take part in the study. Data collection methods include individual open-ended interviews and photovoice, which is a process that will involve participants taking photographs to document their experiences. This study will result in a greater understanding of the cancer journey for survivors of childhood brain tumours and their families as well as recommendations for how to improve care, services, and programs for survivors and their families. Findings from this study will be used to inform and improve existing services and programs, as well as develop new services, programs, and future interventions that are meant to improve how survivors of childhood brain tumours and their families live with and manage the late-effects associated with survival. Finally, this study will contribute to reducing the burden of cancer and enhancing the QOL for survivors and their families.