The Research Team
Lauren Clark, PhD, RN, FAAN
Nurses care for people with developmental disabilities and their families from the beginning—from prenatal care through childhood, adulthood transitions, and ultimately, end of life. While the point of that care is to improve quality of life, we have few ways of assessing whether our care makes a difference in their health and happiness. The goal of Dr. Clark’s research is to address quality of life for diverse and marginalized people, specifically those with developmental disabilities and their families. Dr. Clark is the Shapiro Family Endowed Chair in Developmental Disabilities Studies at the College of Nursing at the University of California Los Angeles.
Sydney Cheek-O’Donnell, PhD
Dr. Cheek-O’Donnell has a long-term interest in political theatre and social justice, leading to the application of theatre in unlikely places, including health care and STEM education. She is particularly interested in understanding how the arts can be employed to improve the social and emotional well-being of individuals and communities. Dr. Cheek-O’Donnell is the Associate Dean for Research in the College of Fine Arts at the University of Utah.
Jacqueline Eaton, PhD
As a gerontologist with a research PhD in Nursing, an MS in Gerontology, and a BA in Theatre Studies, Dr. Eaton conducts transdisciplinary research using an approach that focuses on enhancing the quality of life of older adults and their caregivers, as well as individuals with disabilities, through arts-based interventions. She collaborates with a professional theatre group specializing in performing for underserved audiences to disseminate caregiving research using professional performances of an ethnodrama created in partnership with informal family caregivers. Dr. Eaton is the Director of the Gerontology Interdisciplinary Program in the College of Nursing at the University of Utah.
Erin Johnson, PhD
Dr. Johnson has her PhD in Cognitive Psychology and is currently a Research Associate in Obstetrics and Gynecology at the School of Medicine University of Utah. Her research interests are broad, encompassing psychology, language and reading, bioethics, and social justice.
Britt Dixon and Kyle McDougle worked with the research team and contributed to data collection and analysis. Yuki Minami assisted with community engagement.
The parents who took part in the study shared moments of intense feeling and their responses over time. We thank them for their candor.
We acknowledge Primary Children’s Medical Center and Utah Down Syndrome Foundation for supporting parent recruitment to the study. In the ensuing stages of resource development we were helped by a cast of parents and disability community leaders who helped to shape the video vignettes and website.