Children with complex chronic conditions (CCC) receive care from multiple health-care providers in a variety of settings for a prolonged period of time. These children often receive life- sustaining treatments that have profound long-term implications for children and their families. Caregivers of children with CCC face difficult decisions about pursuing (or not pursuing) these treatments. Caregivers are largely dissatisfied with the decision making process, particularly with regard to their ability to understand the long-term implications for their decisions. Currently, there is a lack of evidence-base to inform clinicians about what should be an optimal way to support caregivers in decision-making about life-sustaining treatments. We have designed this project to address this gap in decision-making. The aims of this project are to: (1) define key elements of decision-making that are important to caregivers in making decisions about life- sustaining treatments for their children with CCC, (2) identify facilitators and barriers to communication between caregivers and physicians about life-sustaining treatments, and (3) explore clinically relevant and realistic options for improving decision-making process about life- sustaining treatments. We will use qualitative methodology to study these questions. For Aims 1 and 2, we will conduct in-depth, semi-structured interviews of 40 caregivers of children who have received tracheostomy or chronic mechanical ventilation. Using information from the first two aims, we will conduct group interviews of 38 physicians and surgeons to explore strategies to enhance facilitators and reduce barriers to decision-making about life-sustaining treatments for children with CCC. This project is the first step in our long-term goal to develop a testable intervention to support caregivers' in decision-making about life-sustaining treatments,

R21NR013272

2013-05-21

2016-04-30