Non-Therapeutic Protocol
FACE: Longitudinal Pediatric Palliative Care: Quality of Life and Spiritual Struggle
Type of Protocol/Clinical Study
Associated Infectious Diseases Studies : HIV / AIDS
Description
There are an estimated 42 million people living with HIV or AIDS worldwide, and more than 3 million die every year from AIDS-related illnesses. Hundreds of U.S. teens become infected with HIV each year. Little is known about what adolescents want in terms of end of life care. This is a multi-site study aiming to look at the attitudes adolescents with AIDS have about discussing their wishes for life-prolonging treatments with their families, physician or other health care providers. This also is known as an advance directive or a living will.
This is an experimental study to see if an intervention aimed at increasing communication and congruence during these sensitive discussions (Family Centered Advance Care Planning) is helpful to adolescents and families. Other participating sites include Children’s National Medical Center (coordinating center), the University of Miami, and Johns Hopkins University.
Objectives
- This study will test the efficacy of the FACE intervention for increasing communication and congruence in end-of-life treatment preferences between teens with AIDS and their surrogates, and determine if increased congruence can be maintained over time.
- This study will also examine the impact of the FACE intervention on decisional conflict, quality of communication, and patient quality of life.
Eligibility
- Research participant has ever been diagnosed with AIDS acquired through either perinatal or behavioral transmission.
- The research participant is greater than or equal to 14.0 years and less than 21.0 years at the time of enrollment.
- The participant and guardian/surrogate’s primary language is English
- The adolescent and surrogate are aware of the adolescent’s HIV diagnosis
Principal Investigator
Megan Wilkins, PhD
The above information is intended to provide only a basic description about a research protocol that may be currently active at St. Jude. The details made available here may not be the most up-to-date information on protocols used by St. Jude. To receive full details about a protocol and its status and or use at St. Jude, a physician must contact St. Jude directly.