Presented by: Karen Cook, Kim Bergeron
A growing population of young adults (YAs) with life-limiting conditions require a developmentally appropriate approach to care. Like all YAs, they are wired for living and aspire to attend post-secondary education, have meaningful vocation or work, and live independently. However, their developmental goals may collide with changing symptoms or end of life. Further, adult services are not designed to address their developmental, social, education and financial needs.
YAs with life-limiting conditions will benefit from a public health palliative approach to care, that matches their chronic disease trajectories of a series of declining plateaus over a period of months to years, punctuated by unpredictable periodic crises. A palliative approach to care for YAs facilitates collaborative partnerships across community and health agencies to ensure timely and seamless resources to meet their needs. These resources will support their quest to maximize their quality of life and opportunities in an abbreviated time frame. Currently, there are few programs that recognize the unique palliative needs of YAs.
Successes, challenges and results of our research, Bridging the Gap: Developing a Palliative Approach to Care for Young Adults will be described. We used a three-phase online patient engagement strategy to hear the voice of YAs with life limiting conditions, their families, and health and community professionals. This research culminated in a prioritized plan to enhance well-being, improve access to services and funding, build relationships, and develop a supportive community. Opportunities and barriers for research engagement with the YAs, their parents, and community and health providers will also be presented.