What To Expect – Down Syndrome Diagnosis

Overview

Rescuing Hope is the typical journey on which parents go after hearing their child’s diagnosis of Down syndrome. Each video in this project uses the experiences and words of families of children with Down syndrome to represent a key moment in the process of Rescuing Hope.

Follow the 12 videos in the Rescuing Hope series to learn about parents’ sense-making journey, from the difficult moment of their child’s diagnosis through the next months of learning more, connecting with others, planning for the future, and belonging to a community of people with differences and disabilities.

These videos are the result of research with parents and grandparents who learned of their child’s diagnosis with Down syndrome or Spina Bifida. Through in-depth interview with 33 parents and 9 grandparents of children with Down syndrome, we track their sense-making journey. We also included 7 parents of children with spina bifida.  Half of the people we interviewed learned prenatally about their child’s intellectual or developmental disability, and half learned when their child was born.  The children were all three years old or younger when their parents were interviewed.

The overall goal of the research was to understand the process that families go through as they make sense of their lives after receiving the unexpected news. Through our analysis of the interviews we recognized that the core of everyone’s sense-making journey was the process of rescuing hope.

About

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.

Media

2. Riding the emotional rollercoaster after diagnosis
3. Sometimes one parent learns about the diagnosis before the other
4. Telling your other children their sibling has special needs
5. Conversations with your extended family and friends
6. Anticipating the future as your child grows
7. Dealing with new medical issues can be all-consuming
8. Gathering information and planning for the future
9. Families listen and learn from each other
10. Thinking about the future leads to new expectations
11. How parents come to see themselves and their children with special needs
12. Gradually reaching acceptance of a new reality

The Research

The Research:

In the first phase of our research, we conducted interviews and analyzed what parents and grandparents said using grounded theory. This method stays true to the experience and words of parents, and organizes their experience into a shared process.  Every parent’s experience is different in detail, but the stages, phases, and overall arc of their sense-making process shows patterned consistency.  The Rescuing Hope process is a result of this phase of our research. (Clark L, Canary HE, McDougle K, Perkins R, Tadesse R, Holton AE. Family Sense-Making After a Down Syndrome Diagnosis [published online ahead of print, 2020 Jul 3]. Qual Health Res. )

In the second phase of our research, we relied on interviews to create a script for each of the 12 vignettes. The scripts are true to the feelings, thoughts, and experiences of parents, altered slightly to preserve their privacy. A group of parents who took part in interviews reviewed the scripts and the videos. They offered feedback about how to best represent the experience without shying away from the sorrows or overshadowing the joys

The Funding that Made it Possible

Research reported in this publication was supported by the Utah Center for Excellence in ELSI Research (UCEER). UCEER is supported by the National Human Genome Research Institute of the National Institutes of Health under Award Number RM1HG009037. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Resources

Links to Useful Resources: