What To Expect – Support for Parents of a Child with a Disability

Overview

Rescuing Hope, A Parents' Sense-Making Journey
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Rescuing Hope describes parents’ experiences after hearing their child’s diagnosis with a developmental disability like 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 11 videos in the Rescuing Hope series to learn about parents’ sense-making journey. It starts with the difficult moment of their child’s diagnosis, continues through the next months of learning, connecting with others, and planning for the future. The last video is about 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 interviews with 33 parents and 9 grandparents of children with Down syndrome or Spina Bifida, we tracked their sense-making journey. Half of the people we spoke with 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 we interviewed their parents.

Through our analysis of what families said 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.

Video

Starting Your Journey
Sharing the News
Imagining the Future
Adjusting Expectations
Your New Life Together

Starting Your Journey

Parents start a new journey when they hear the news of their baby’s diagnosis. They learn. And they feel a mix of emotions.


Sharing the News

Eventually, parents share what they know about their baby. They talk with their own parents, other children, and friends. Parents’ reactions set the tome for the difficult conversations. Support and understanding follow.


Imagining the Future

Anticipating the future as the child grows up, parents look ahead with a mixture of emotions.


Adjusting Expectations

There’s a lot to learn! Parents enjoy their child’s growth and learn as they go. They adjust their expectations to fit.


Your New Life Together

Children are more alike than different, and parenting a child with a disability can be delightfully ordinary. Parents grow into hope and acceptance.

 

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: