When we hear the term "patient safety", we tend to think of the duty of health care staff to provide safe treatment that is free of errors and infection risks. However, another aspect of safe treatment is involving children in their own healthcare, from diagnosis right through to discharge.
"Children who know what's going on recognize the type of treatment they get at home and can then "correct" their health care provider because they know what should happen," according to Dr. Donna Koller, a scientist at SickKids and Associate Professor of Early Childhood Studies at Ryerson University, Toronto.
Respecting the right to take part in health care decisions
Children have the best chance to speak up about their health when their rights to health information are respected. As Koller notes, "Under the UN Convention on the Rights of the Child, children have a right to know what is happening to them and to have a say in things that affect them." Health care professionals can sometimes be slow to acknowledge this, however, and prefer to speak to parents directly. "Only when children are older do physicians - who might have been treating them for 10 or 15 years - start talking to them directly," Koller adds.
To help remedy this situation, Koller and a team of researchers produced a set of tips for parents to involve a child in their own health care. They have also produced tips just for children on how to talk about their own health with their doctors and nurses. The tips include pointers on asking questions, checking how much information a child understands and sharing information in language that is suited to child's age.
Children want to be involved as early as possible
The tips are very much needed, according to Koller, who has published research about the views of children on the role they play in their own health care.
One part of the research involved interviewing almost 30 children and teens who had been treated at least once in hospital for a chronic (long-term) condition. One main finding was that children wanted to be involved in managing their health from an early age. Koller adds, "Most of the school-age children and teens all believed that young children should participate as early as they can. They wanted to know what chronic illness means and how they can help manage their condition."
The interviews also aimed to identify how much children and teens knew about their health. Some children knew why they needed treatment, but Koller observed misunderstandings about a condition among some others, even those who had a condition for a long time. Still more revealed that their ability to process information sometimes was not tapped because people did not ask them regularly about what they could or could not understand.
Aware children make strong safety advocates
One other finding from the research was that children can be strong advocates for their own safety in sometimes unexpected ways. One five-year-old patient who was interviewed recognized that she needed her parents to talk to doctors because she did not understand enough herself.
With that in mind, Koller advises parents to consider how much information their kids can handle and to share this with their child's health care team. She adds, "Children have a right to participate in their health care, but at the same time, they should never be forced to. Children change their minds too and this should be respected." Parents should also reflect on their own values to see if they are comfortable with their child receiving health information directly from the health care team, even if they can understand it.
Ultimately, however, a well-informed child is a safer child: they can understand their treatment, are less fearful and can be quick to point out if anything does not seem right. As Koller observes, "The more knowledgeable the child, the greater the safety."