Reflections and Responses: Six Models for Understanding How Families Experience the System of Care for Children with Special Health Care Needs
During the spring and summer of 2013, some 61 stakeholders—including 52 parents of children with special heath care needs and nine providers and policymakers—were systematically interviewed for their responses to and reflections on six ethnographic models produced for the Lucile Packard Foundation for Children’s Health in 2009. Another 60 workshop participants at an academic meeting also provided input. The purpose of the models is to illustrate the experiences of patients and families as a means to support efforts to improve the system of care for children with special health care needs. The findings from this study strongly support the notion that the models have the potential to—if they haven’t already—contribute to achieving better understandings of these experiences.