Learning What to Expect When you Have a Child with Down Syndrome

With scientific advances, parents know more about the genetic makeup of their unborn child. This study provides priority information for the clinical care of parents expecting to deliver a child with Down syndrome. Results frame expectations about an anticipated future and quality of life for themselves and their baby.

Learning What to Expect When you Have a Child with Down Syndrome Lauren Clark, RN, PhD, Heather Canary, PhD, Rebecca Anderson, RN, PhD, Kyle McDougle, BS Background Purpose Method With scientific advances, parents know more about the genetic makeup of their unborn child. This study provides priority information for the clinical care of parents expecting to deliver a child with Down syndrome. Results frame expectations about an anticipated future and quality of life for themselves and their baby. The purpose of this study was to describe the kinds of information and support parents sought prenatally or neonatally after learning their child had a Down syndrome diagnosis. Using constructivist grounded theory we analyzed in-depth, hour-long interviews with 33 parents (21 mothers, 12 fathers) conducted in 2015-2016. All parents had a child (1-3 years old) who was first diagnosed with Down syndrome prenatally or shortly after birth. Interviews were transcribed verbatim and coded in a team environment to arrive at phases in the grounded theory. Parents' Process of Rescuing Hope after hearing the Down syndrome diagnosis Telescoping into the Future Tearing Apart -separated, not a mother Waiting& Looking -noncomprehending -starting to love unconditionally Dawning Comprehension and Disclosing Inspirational Messages -parenthood is more the same than different -child is simply a child Information Saturation Recalibrating Expectations Crying The Diagnostic Reveal Owning Identities -grieving "prom" The Gap -information & connections -medical priorities Enacting Hope Red=Intervention Possibilities Prenatal diagnosis "Knowing ahead of time we prepared so that when he was actually born we said, "We're having a baby!" It was helpful to just be able to educate yourself about Down syndrome and learn more about it." N=13 "We processed it fast, with her in front of us, comforting us. [If we had learned prenatally] we would have just worried for months about what was gonna happen once she was born. This was ripping the band-aid off and getting through all those emotions really fast." Neonatal diagnosis N=14 Prenatal and neonatal diagnoses each offered advantages to parents, yet both groups of parents described a painful emotional period of shock and dawning awareness after diagnosis. Information-seeking tended to funnel from general purpose to specific needs, with inspirational messages and hope offering a gateway to identity formation as a parent of a child with Down Syndrome and construction of parenting as enacting hope for a baby who "is just a baby." Inspirational Messages. "She is just like everyone else in some really important ways: she's here to learn and to grow." "Never expect less." "Take a deep breath and hold him." "Do everything you can to help him fly." Implications: Parents recalibrated expectations for the future and relied on hopeful messages about what to expect. A credible, curated library of resources for parents just hearing the news is needed. The library should include • Visual images of children and families with Down syndrome in day-to-day settings • Hopeful narratives by other parents about the meaning of the experience to them • Medical authorities sharing basic facts about common medical considerations COLLEGE OF NURSING Research reported in this publication was supported by 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.