• Karen A Cook, Susan M Jack, Hal Siden, Lehana Thabane, and Gina Browne.
• 1 Faculty of Health Disciplines, Athabasca University , Athabasca, Alberta, Canada .
• J Palliat Med. 2016 Aug 1; 19 (8): 830-5.

BackgroundWith improvements in pediatric care and technology, more young adults (YAs) with life-limiting conditions (LLCs) are surviving into adulthood. However, they have limited expectations to live beyond the first decade of adulthood. This study describes the monumental efforts required for YAs with LLCs to achieve their goals in an abbreviated life.ObjectivesThe experiences and aspirations of YAs with LLCs to achieve their goals are relatively unknown. This report focuses on their experiences of living with uncertainty and its impact on achieving developmental goals.DesignThis study is one component of a larger descriptive study using an innovative bulletin board focus group to examine life experiences of YAs with LLCs.ResultsYAs with LLCs share the aspirations and goals of all YAs. Some participants demonstrated a striking capacity to navigate system barriers and achieve their goals, whereas others "got stuck" resulting in lost opportunities. Successful personal life investments were possible if resources were made available, coordinated, navigable, and responsive to new and special requests. Transformative changes to health, social care, and community services are necessary to support their YA ambitions.ConclusionsThis study gave voice to those who were previously unheard and demonstrates the monumental hurdles YAs with LLCs face to achieve their goals. A palliative approach to care can mitigate unnecessary hardships and support their goals.

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