In pediatric palliative care appointments across Australia, a crucial discovery is reshaping how doctors and families understand whether children are truly involved in their own medical care: most children are speaking up constantly—they're just not using words.
Researchers examining 60 appointments at three Australian pediatric palliative care services found that children communicate their preferences and engage with healthcare professionals through sounds like grunting, groaning, crying and laughing, as well as through touch, gesture, posture and facial expressions. This finding matters deeply because existing research shows children who actively participate in their own treatment recover faster from surgery, experience less anxiety and feel more valued. Yet for over 50 years, studies tracking child involvement in medical appointments have shown it remains consistently low—largely because medical professionals and families have been listening only for words, missing the symphony of nonverbal signals children are constantly offering.
The study reveals that once researchers began paying attention to these alternative forms of communication, they discovered even very sick children involved themselves in health care appointments regularly—on average every 90 seconds. This was especially significant for children with life-limiting conditions like severe cerebral palsy, genetic syndromes such as Trisomy 18, neurological and metabolic conditions including childhood dementia, and advanced cancers such as leukemia and brain tumors. Pediatric palliative care services were chosen for the study specifically because they support children of all ages, from infants to young adults, including both speaking and non-speaking children.
The research also revealed that adults actively shape children's involvement. Rather than waiting for children to speak up, healthcare professionals and family members creatively engaged children by playing peekaboo, singing favorite songs, playing with toys children brought to appointments, and admiring their growth. These interactions demonstrate that involvement isn't passive—it's something adults can deliberately cultivate.
A second finding proved equally important: the number of adults present during appointments significantly affects how involved children become. When only two adults were present—typically one family member and one healthcare professional—the two adults tended to talk to each other about the child's treatment with minimal child involvement. However, when more adults were present, children were far more likely to be actively included. The pattern was strongest when multiple healthcare professionals attended alongside a family member. In such arrangements, one professional could focus on communicating with the parent while another prioritized engaging directly with the child.
These findings underscore an urgent gap in current practice: families and healthcare workers need dedicated training to engage children in both verbal and nonverbal communication—particularly with children who don't speak. For a child facing a life-limiting illness, being truly heard during their own medical appointments isn't a luxury. It's an essential part of maintaining dignity, autonomy and quality of life during an already difficult journey.
The research points toward a clearer path forward: healthcare systems that recognize how children actually communicate, that invite multiple professionals to work together, and that train adults to listen with their eyes and ears as much as their ears alone.