Decision-Making Involvement Throughout the Illness Trajectory

Decision-making involvement is the relational process of supporting pediatric patient involvement in healthcare decision-making. This chapter aims to address the role of the pediatric patient in decision-making throughout the illness trajectory, and factors influencing individual patient and family preferences for decision-making involvement. The role of clinicians in facilitating pediatric patient involvement in decision-making is explored. Common barriers to decision-making involvement are addressed with recommendations for managing these barriers, including those such as caregiver interference and discordant beliefs. Methods of facilitating involvement across the continuum of development are discussed, and particular attention is given to determining the appropriate level of involvement based on individual patient and caregiver characteristics. This chapter includes suggestions for assessing competency to participate in individual care decisions and references helpful clinical tools for application in practice.