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


Eligibility

Principal Investigator

Megan Wilkins, PhD


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