Research provides insights into adolescents’ care-planning needs

St. Jude-led research shows that HIV-infected adolescents and their families benefit from tailored, advanced-care planning with trained facilitators. Participants in a recent clinical trial called the process worthwhile and helpful. The study suggests that other young people with life-limiting conditions may benefit from this approach to planning care at the end of life.

“These are difficult discussions to have, but we found that adolescents as young as 14 wanted to be part of the conversation about end-of-life care, and that families wanted to hear from their children,” said Ronald Dallas, PhD, of St. Jude Infectious Diseases.

The research appeared in the journal Pediatrics.

An estimated 400,000 U.S. children have life-limiting conditions such as cancer or HIV/AIDS.

“The findings should help allay clinicians’ fears about initiating these discussions with adolescents,” Dallas said.