Navigating Gatekeeping Challenges in Pediatric and Young Adult Palliative Oncology and End-of-Life Research

Cet article examine les défis à relever pour réduire les intermédiaires qui empêchent, en raison de risques potentiels invoqués, les enfants, les adolescents, les jeunes adultes et leurs familles de participer aux recherches sur les soins palliatifs et la fin de vie

Résumé en anglais

The National Academies of Medicine have long-deemed research to improve quality of care for children with advanced cancer a foremost priority. Perspectives from patients with serious illness and their families are critical to investigating and improving care for this vulnerable patient population. Yet, clinical research that directly engages pediatric, adolescent, and young adult (AYA) patients with advanced cancer and their families poses unique challenges. A central barrier to progress in pediatric palliative and supportive oncology research is gatekeeping, wherein an individual or a group may prevent patients and families from being approached for research participation under an assumption of excessive burden or potential harm.