For adolescents and young adults (AYA) with serious illnesses, time complicates end-of-life and palliative care. Because of advances in medical science, many pediatric patients with serious illness are living beyond the definition of childhood (0-20yrs). Consequently, they are transitioning out of pediatric hospice care to adult care models. Prior to the 2010 Affordable Care Act, these AYA usually transitioned from pediatric to adult hospice care with a change in services, but no change in eligibility required. Today, many AYA has been enrolled in concurrent hospice care that enables them to receive life-prolonging therapies along with hospice care.
However, when they reach 21 years, AYA confronts the decision of enrolling in adult hospice without therapies or continuing therapies only. It is a difficult choice for AYA and their families. And yet, we know so little about transitioning out of concurrent hospice care and what their needs are prior to this transition. Understanding their prior needs would ensure that AYA-appropriate support models and interventions are created as AYA and families embark on transitions out of concurrent hospice care and beyond.
Project Award (pending)
The proposed study will provide baseline information needed to advance our knowledge on how to improve outcomes of seriously ill AYA and their family caregivers who transition out of concurrent care by identifying their needs during this phase and the barriers and facilitators they face preparing for this transition and directly responds to PAR-19-153.
The long-term goal of this research project is to improve the health and quality-of-life of seriously ill AYA and their family caregivers.
Meet the Team
Our team has expertise in end-of-life and palliative care, AYA, and family research, as well as methodologic expertise in advanced statistics, large dataset analyses, and multi-methods research.
