A psychology researcher is partnering with Young Adult Cancer Canada (YACC) on the biggest young adult cancer study ever.
Dr. Sheila Garland and her research group will be the first to explore the physical, social, financial and emotional challenges faced by young adults diagnosed with cancer and compare them to their non-cancer peers.
“Two years ago, when I first met with YACC, they started asking me questions I didn’t have the answers to, questions you would really not think were all that difficult to answer,” said Dr. Garland.
“They were things like, ‘What does the research say are important issues for young adults?’ and, ‘Are young adults with cancer really all that different from young adults without cancer?’
“I didn’t know, so I went to the research literature and started scouring through articles and found that while there was stuff out there, it wasn’t asking or answering these basic questions.”
“It really hit home to me that most of my research team and I fit into that young adult age range.”
What really made the project personal to Dr. Garland was attending a YACC retreat in 2016 as a facilitator, hearing their stories and realizing that she was the same age as many of those attending.
“That’s when I really became more invested in the need for a large community project to answer these major knowledge gaps in the literature,” she said. “It really hit home to me that most of my research team and I fit into that young adult age range. I put myself into the position of every person I had a chance to meet and I knew that if it were me, I’d want these answers.”
The Young Adult Cancer (YAC) Prime Study kicked off June 2 at Fog Cancer, YACC’s 11th annual Survivor Conference. This year, the conference saw nearly 100 survivors and their supporters from across Canada come to St. John’s, NL, for four days of support, community, information and empowerment.
“This is all about inciting change,” said YACC executive director Geoff Eaton to the conference attendees assembled for the launch. “We’ve been around as an organization for 17 years and we have gathered a lot of knowledge, largely from dealing with you guys – working with you, delivering programs for you and listening to you.
“We always try to hear and listen to what you are saying and that guides the development of our programs. But we haven’t had a lot of independent, objective analysis of the population, the challenges you are facing or the impact of the programs that YACC is delivering.”
‘Forgotten and under-served’
Mr. Eaton described cancer survivors between the ages of 15 and 39 as a forgotten and under-served population.
“Cancer is different for young adults,” he said. “One of the biggest challenges we face is isolation. Most of us are the first of our buddies to get cancer. We can be well-supported, surrounded and loved, but can still feel isolated.
“If you look across the spectrum of the cancer experience, whether it’s clinical trials, research or supportive care, you’ll find young adults are missing. We are not a major priority of anyone. We love the idea of enhancing the awareness and understanding of the issues facing young adults and then putting action into place to incite and create change.”
He says YACC’s goal is have more than 600 participants from across the country take part in the study. As part of the opening recruitment campaign, conference attendees gathered for a group photo and took to social media channels with selfie shots.
Dr. Garland hopes the information gathered from young adult cancer survivors will increase knowledge and access to services and ultimately change policy.
“We’re going to be using the information you provide and recycle it back to help you even more,” she said, addressing the attendees. “That’s what makes this research different from any other research you’ve been approached for. Your answers to these questions will be fed through the research at the university and then integrated back into the services YACC provides and the advocacy they do so well.”
Funding for this project was provided by the Collaborative Applied Research in Economics (CARE) initiative of Memorial University’s Department of Economics. The initiative brings together research economists to promote applied economic research with a view to promoting a greater understanding of our economies and associated social impacts.
Dr. Wade Locke, one of CARE’s principal investigators, described the project as a great example of interdisciplinary research and an important connection with the community.