"Knowledge, to a certain extent, alleviates fear. A lot of times, if you give kids a little bit of knowledge, they’re not so intimidated to ask their doctor a question," he said in an interview, emphasizing that all communication should be done in an age- and developmentally-appropriate manner.
For example, at All Children’s, child life specialists use a puppet to explain to younger patients about different types of cancers, how to take medication, and the basics of blood test results.
At Seattle Children’s Hospital, Dr. Glen S. Tamura, director of the inpatient medical service, found that, similar to findings of the study, children – particularly younger patients –are especially unlikely to start in-depth dialogue with their health care team. They prefer to stick with getting information from Mom or Dad.
"[Children] are not initiating the conversation, for the most part. You need to engage them. That said, when you engage them, they frequently have an opinion," he said in an interview.
Family-centered care is central in making sure that everybody is aware of what is happening, according to these doctors and St. Jude Children’s Research Hospital’s bone marrow transplant board life specialist, Ashley Carr. With consistent rounds with medical teams and parents, patients are able to maintain ongoing and close relationships with both physicians and nurses and have their frequent questions of – "Is it going to hurt?" or "Am I going to die?"– answered.
"[Our doctors] know what these kids like to do before they were patients at St. Jude’s," Ms. Carr said in an interview. "They go the extra mile, and they take the extra step to get to know these families as a whole and not just as a patient."
In the published study, a teenage girl articulated how the inverse in the physician-patient interaction can be equally valuable. "[The doctor] started telling me about himself which kind of got me more kind of like trusting to him that he’s going to make the right decision."
Unfortunately, too often it’s parents and guardians who are the highest hurdle in communicating with pediatric inpatients. They may be trying to protect the child or simply be offering up wrong information on their child’s behalf, the study authors observed. "Therefore, children should be allowed the opportunity to volunteer their own information," they wrote, quoting a 13-year-old boy’s sentiments this way: "I think the children should get the opportunity to tell what they think it is and not just what their parents or the doctors think it is."
And some children in the study reported learning how to negotiate the system to get the most out of talking with their doctors. As a boy, age 11, put it: "If you keep being on them and asking all these questions, they are going to get annoyed and they’ll tell you anything, so you shouldn’t really ask them that much, ask them a few times, that’s it. You just have to wait until they come to you, and if you wait, they’re much nicer to you."
Study author Dr. Coyne has considered the root of why some physicians struggle with communication issues surrounding young patients. "I believe some doctors are trying really hard to include children, but they find it difficult to get around the parent that’s blocking them," she said. "Maybe if they had good education at an undergraduate level in their medical curriculum [on] how to communicate with children and how to handle triadic encounters, then they might be better at being able to facilitate the child’s needs and the parent’s needs."
"Ultimately, these parents are their child’s biggest team leaders. They’re their biggest support, so if a parent is uncomfortable sharing information right away, I just continue to support them and educate them and continue to advocate for what I’m seeing the patient needing," Ms. Carr said.
The results of this study suggest that guidelines and policies should be established to ensure full communication among all three parties, Dr. Coyne said.
"Health care organizations need to build cultures of participation where participation is firmly embedded, not just a desirable add-on," according to the study authors. "Given that children’s participation improves the quality of care provided, it is an important investment and one that requires adults to move to a child-centered approach in how they relate to children."
"We shouldn’t discount their views just because they’re children," they said.
Funding for this study was provided by the Office of the Minister for Children, Department of Health and Children, Dublin. Researchers reported no other relevant financial disclosures.