Palliative and End of Life Care and Research

Addressing the Needs of Children and Young Adults with Life-Limiting Conditions

Maureen Lyon, Ph.D., ABPP, is funded by the National Institute of Nursing Research (NINR) to study advance care planning in teens with cancer, and teens and adults with HIV/AIDS. The adult-focused work is in collaboration with the NIH-funded District of Columbia Center for AIDS Research (DC-CFAR). This research program includes a multidisciplinary team of 41 investigators at 13 study sites, including physicians, nurses, psychologists, social workers, clinical coordinators, and graduate students. These collaborative teams have focused on palliative care for HIV-positive persons in Appalachia and geographic mapping of palliative care use among severely ill children.

A new collaboration with the University of Minnesota involves a pilot study of the Family-centered Advance CarE (FACE) planning intervention developed for teens about to undergo a bone marrow transplant. The team is also exploring the impact of advance care planning on treatment adherence.

Meet the Team

• Maureen Lyon, Ph.D., ABPP 
• Jichuan Wang, Ph.D.