It would be difficult for most parents to imagine being denied the simple act of holding their children in their arms or tossing a ball around with them outside after school.
Unfortunately, for many Canadian breast cancer survivors, this is a tragic reality. Pain, range of motion restrictions and secondary lymphedema after cancer (chronic swelling of one or more limbs) may all be disabling arm conditions experienced after breast cancer surgery.
“Disability is a very much under-researched aspect of cancer survivorship,” says Dr. Roanne Thomas, a Full Professor in the Faculty of Health Sciences at the University of Ottawa and Canada Research Chair in Qualitative Health Research with Marginalized Populations. “Life with a disability is often riddled with paradoxes, one of which is being visibly marked, while personal experiences, losses, and challenges remain hidden.”
Shedding light on the invisible
Recognizing the social barriers and challenges related to the invisibility of disabling conditions like secondary lymphedema after cancer, Dr. Thomas has been inspired to build a health research career around understanding the health experiences of marginalized groups and pioneering new research methods that help reduce the impact of inequality on illness.
Through the use of innovative methods such as photovoice (which allows people to tell their stories with digital cameras) and drama, Dr. Thomas is helping marginalized populations across Canada to share their experiences in ways that are meaningful to them. The aim of her research is to improve understanding of the health and illness experiences of marginalized populations and provide a foundation for more informed health care practices.
“I realized when working with breast cancer survivors during my graduate years that the literature aimed at providing information and support to women did not reflect racial diversity,” explains Dr. Thomas. “As health care researchers, it is critical to incorporate diverse perspectives and innovative ways of sharing knowledge.”
A diversity of research methods
The National Picture Project is just one example of the research initiatives that Dr. Thomas is conducting to improve the health care experiences of marginalized populations with chronic illnesses and disabilities. Funded by the Canadian Cancer Society, the goal of the project is to gather and disseminate knowledge of cancer survivorship from the perspectives of First Nations and Métis people in diverse Canadian communities to establish a strong foundation for culturally responsive programs. Her collaborative team has already published a study protocol which may provide guidance for other researchers interested in using photovoice as a qualitative research tool.
Together with Drs. Mary Egan and Judy King, and with funding from the Canada Foundation for Innovation and the Ontario Research Fund, Dr. Thomas also recently established the Creative Practices Centre in the Faculty of Health Sciences, School of Rehabilitation Sciences at the University of Ottawa to support interdisciplinary research aimed at improving the quality of life for those with chronic illnesses, such as cancer.
“The emphasis of the CPC is to engage with creative practices, such as photography, visual arts, and writing, as forms of support and as strategies of knowledge translation,” explains Dr. Thomas. “The Centre promotes collaborative relationships between researchers, providing space for them to meet in person and/or electronically in order to foster the expansion of qualitative and mixed methods research.”
Through the use of these and other innovative methods, including drama, creative writing, and yoga, Dr. Thomas is helping participants share their experiences in ways that are meaningful to them. In doing so, Dr. Thomas is providing a solid foundation for the development of new forms of psychosocial interventions that could substantially improve the health care experiences of marginalized populations with chronic illnesses and disabilities in Canada and aboard.