New research shows that young people living with HIV suffer fewer virus-related symptoms when they’re able to map out their own long-term health goals. Data also found that when this type of planning, referred to as end-of-life care, isn’t mapped out by the youth or a family member, young people living with HIV are more likely to suffer negative health outcomes.
The study, published in the journal Pediatrics, evaluated 105 mostly black adolescents (93 percent African-Americans) aged 14 to 21 and their families who received care from six U.S. hospital-based HIV clinics between July 2011 and June 2014. One-third of the family participants were also poz themselves.
Lead investigator Maureen E. Lyon, a clinical health psychologist at Children’s National Health System at The George Washington University School of Medicine and Health Sciences in Washington, D.C., tested an intervention known as Family Centered pediatric Advance Care Planning (FACE pACP). In one-hour sessions, one group of youths and their families went through advance care planning, while another group received traditional assessments.
The advanced care sessions involved discussions assessing the youths’ values, beliefs, and life experiences while determining when to begin end-of-life discussions. They also involved decision-making, discussions of death and dying, preparing guardians to respect youths’ wishes, and providing directives to be followed in case the youths are unable to speak for themselves.
After a year of evaluations, the investigators found almost 75 percent of the advanced care planning participants reported having fewer disease related symptoms, compared to 27 percent reporting a high level of symptoms.