For young people with life-limiting conditions, advances in health care have had a significant impact—including now having a much higher likelihood of living into adulthood. Transitioning from pediatric care to the adult system means leaving a coordinated health, social and education services system, and entering one that is more fragmented and largely unprepared for the breadth, complexity and care coordination they need.
To understand how best to bridge this gap, researchers at Athabasca University brought together young adults with complex and life-limiting conditions in BC to collaborate on setting their own priorities for supports and services to help them achieve their goals. Parents and service providers from health care and the community were also included.
The study was backed with seed funding and letters of support from BCCPC, who saw the benefit of applying the public health approach to palliative care to this underserved population. BCCPC also participated in setting priorities for the project.
A public health approach to palliative care focuses on anticipating and managing complex conditions requiring physical, emotional, psychosocial and spiritual needs over a sometimes extended period, and looks at multiple sectors that need to coordinate to support living well. For young adults, the aim is to improve the quality, scope, and accessibility of age appropriate care and services such as colleges and universities, sports and arts programs, social media, leisure opportunities, spiritual communities, housing initiatives, and social service groups.
Through the study, five calls to action were recommended as a first step to improving services for young adults with life-limiting conditions:
1. Change personal funding and eligibility criteria
2. Coordinate funding and services
3. Highlight community education and development
4. Offer more opportunities and resources
5. To create a continuum of care
To bring these calls to action to life, the study participants also identified three foundational strategies that are mission critical. These are to improve funding, improve programming and create a continuum of care.
According to the researchers, this is the first study of its kind to engage these young adults to understand their perspectives about how to improve services. The study aimed to learn from the young adults about what is important in their lives, in an inclusive and respectful way. Based on their feedback, the process was both successful and necessary to understanding how to best bridge the gap in their palliative care.
This study is an important first step to develop recommendations for coordination and access to necessary services and supports for young adults with complex and life limiting conditions, and one that BCCPC is proud to support.
In their own words…
“Resources are scarce and hard to come by. Though it may take a long time for our society to recognize the need and importance of supporting young adults with life limiting conditions, change comes in small steps. We ARE a community facing immense challenges, but we can excel in life if we work together despite our struggles.”
“We feel like we are finally being heard. The Concept Mapping process was effective for us to be involved and feel empowered.”
“We know the system is broken and it needs changes to programming, creating a continuum of care and funding.”
“We have hope for change.”
