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Influences on Decision Making Identified by Parents of Children Receiving Pediatric Palliative Care
Karen W. Carroll, Cynthia J. Mollen, Sarah Aldridge, Kari R. Hexem & Chris Feudtner

Background: Parental decision making is a critical component in the provision of palliative and end-of-life care, yet factors that parents perceive as influencing this process, when they are making decisions for their children, have not been well characterized. Methods: As part of a mixed-methods cohort study, we interviewed 73 parents of 50 pediatric patients who were referred to the hospitalR...

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Health Care Decision Making and Adults with Intellectual Disability: A Descriptive Survey
Rosann O’Dell, Joan Leafman, Guy M. Nehrenz Sr. & Daniel Bustillos

Background: Intellectual disability occurs in approximately 7 to 8 million Americans. The literature demonstrates that this population experiences communication barriers and mischaracterization of abilities during health care encounters, raising ethical considerations regarding patient involvement in health care decisions. Yet, there has been limited research on the involvement of those with intel...

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