Involving Youth With a Chronic Illness in Decision-making: Highlighting the Role of Providers

Abstract

Decision-making is important in the context of pediatric chronic illness because children and families need to make decisions about burdensome and complex treatments on a regular basis, and children must eventually learn how to make such decisions independently. Research related to children’s decision-making in medical settings has been focused primarily on cognitive aspects of decision-making, such as understanding and capacity. The concept of decision-making involvement (DMI) recognizes that children can be involved in decision-making in multiple ways, regardless of capacity, and that parents and health care providers play a critical role in supporting children as they learn to make decisions on their own. Providers can facilitate DMI during medical encounters by asking for the children’s opinions and concerns, encouraging turn-taking, soliciting questions, asking for information directly from the children, and checking that the children understand what has been said. Efforts to involve children send the message that the youth perspective is important and set the expectation for increased participation over time. Providers can also support parent-child decision-making about illness management at home by guiding parents as to how best to involve children in decisions about illness management, identifying areas in which more or less parental guidance and support are needed, and assisting youth in planning ahead for decision-making about illness management in high-risk situations. Additional research is needed to identify why children’s DMI in medical settings remains low, develop and evaluate strategies to enhance DMI, and test the effects of DMI on health-related behaviors and outcomes over time.