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.
According to Lyon, the results show the benefits of speaking to young people living with HIV about not only their treatments, but also their future. “Patients living with HIV and their families found FACE pACP to be an emotional and worthwhile experience,” she told MD Magazine. “One adolescent after completing the intervention said, ‘I feel alive.’”
According to the Centers of Disease Control and Prevention, this age group makes up nearly 21 percent of all new diagnoses. Despite their youth, the study also reported that young people living with HIV are also six to 12 times more likely to die than the general public.
According to the recently released 2017 HIV Surveillance Report from the CDC, African-Americans account for the highest rates of HIV diagnoses in the United States at 41.1 percent — followed by Latinos, who make up 12.6 percent of all new cases. The report also shows that youth aged 13 to 24 saw 8,164 new diagnoses in 2017. Of that number, 4,257 were black.
There is a growing understanding of the benefits of involving youth in their own health decisions. In 2018’s Histories of the Transgender Child, Julian Gill-Peterson argues, “As simple as it sounds, pediatric trans medicine would be radically transformed by actually asking trans children what they want and truly basing care on that knowledge.”
In the case of black poz teens, activists and researchers make the same argument.
“Some families and physicians have said if adolescents and young adults just took their HIV medications, they would live a long life and it would avert the need to have these conversations,” Lyon noted. “However, adolescents living with HIV have told us they want to have these conversations, have thought about death and dying, and have even experienced deaths due to HIV in their family.”
Lyon added, “FACE pACP increased the odds that families understood their adolescents’ treatment preferences, which in turn, predicted fewer HIV-specific symptoms in their adolescent a year later.”
It’s important to provide poz youth with the facts they need to make informed decisions about their care. That means sharing the real consequences of following (or rejecting) treatment plans, including the possibility of death if they don’t take their medicine.
“Adolescents express a desire to be involved in goals of care conversations with their families,” Lyon said, and letting them has positive results. “FACE pACP gives teens a voice, helps families ‘break the ice,’ and provides an extra level of support to their doctor. Don’t be afraid.”