By Pam Crotty, senior research manager
The YACC Recover Study is a community-based, longitudinal study where we aim to describe the quality of life (QOL) in young adults living with cancer so we can offer meaningful services that could improve the lives of the community we serve.
Community based research is “a research approach that involves active participation of stakeholders, those whose lives are affected by the issue being studied, in all phases of research for the purpose of producing useful results to make positive changes.”*
We have been fortunate to be able to collaborate with our Insight team over the past few years in the development of the study protocol and procedures. During this process, we have learned what could benefit the young adult cancer community. With this feedback, we have determined which aspects of QOL to explore more that would matter most to young adults living with cancer.
This led us to explore which validated questionnaires we could use to help us address various areas of interest such as functional health, psychological health, psychosocial care, and practical and financial issues. These questionnaires, coupled with demographic and cancer specific questions has led to the formation of the YACC Recover survey!
We plan to collect these measures now to get a baseline, and then yearly for the next five years — at least. We hope that this will provide a robust description of QOL of young adults who are diagnosed with cancer before the age of 40, and will look at various stages of life.
Further to this, we plan to dive deeper in to emerging themes resulting from the survey as well as various topics that are important to the young adult cancer community. The leadership team will be instrumental in helping with this and will help shape the research moving forward by representing the young adult cancer community.
We are very excited to report that we have already enrolled over nearly 400 people and hope to reach our 2,000 goal before the fall 2024.
For more information, please visit recoverstudy.ca or email [email protected]!
*Nelson, G. Ochocka, J., Griffin, K. & Lord, J. (1998). “Nothing about me without me”: Participatory action research with self-help/mutual aid organizations for psychiatric consumer/survivors. American Journal of Community Psychology, 26, 881-912.
