Marie Neumann MA

Project Researcher, University of Nebraska Medical Center, Omaha, NE

Marie Neumann, MA, is a social scientist by training and has conducted research on pediatric palliative care, parenting of children with medical complexities, and, most recently, how SBS impacts the well-being of patients and families. She is currently earning a Ph.D. in communication studies, specializing in individual, family, and health communication. She holds a research position at the University of Nebraska Medical Center (UNMC) in Omaha, NE, where she studies quality of life (QoL) for children and families impacted by SBS. Marie's personal SBS journey inspired this work. Four years ago, her youngest child was diagnosed with ultra-short gut. Clinicians' communication about her son's future propelled her to systematically study the experiences of children with SBS and their families. Together with a group of SBS community members, two of whom are co-presenting with her today, Marie founded the gutsy perspective, an initiative to close the gap between the SBS community and the research that affects its members. The group's most recent accomplishment is the development of a disease-specific QoL survey for kids through a process that incorporated perspectives from clinicians, children, and the wider SBS community.