According to Cook, a life threatening condition adds complexity to the challenging period between childhood and adulthood and unfortunately, the interdisciplinary support services required by those young adults with paediatric life threatening conditions who live beyond childhood, but have limited expectations to live past early adulthood are not available.
Her research shows that these young adults, who are the first generation to live into adulthood, are faced with a multitude of challenges in their transitioning from the relative plethora of paediatric services to the far less abundant adult health services. As a result, these young adults become vulnerable to a significant deterioration in health status and even increased mortality, once they leave paediatric care.
Differences in definition and types of services offered in palliative services for youth and adults have resulted in confusion and abrupt ending of supportive services for young adults with life threatening conditions. For these young adults, impasses to supportive palliative care continue to exist because of the history and culture of ingrained practice models, and deficient system policies and legislation for chronic illness transition.
These impasses are compounded by the complexity of their conditions, uncertain and sudden changes in their illness trajectory, lack of understanding by service providers of their conditions and resources required for living, and educational and vocational pursuits, and lack of knowledgeable, supportive and trusting relationships with adult care providers.
You can read the full research report here