Diagnosis Of Down Syndrome

Journal for Specialists in Pediatric Nursing

ORIGINAL ARTICLE

Factors associated with emotional response of parents at the
time of diagnosis of Down syndrome


113..120

Eun Kyoung Choi, Yong Ju Lee, and Il Young Yoo
Eun Kyoung Choi, RN, PhD, is a Pediatric Nurse Practitioner, Severance Children’s Hospital, Yonsei University; Yong Ju Lee, MD, is a Clinical Fellow,
Department ofPediatrics, Yonsei University College of Medicine; and Il Young Yoo, RN, PhD, is a Professor, Department of Family Health Care, Yonsei
University College of Nursing, Seoul, Republic of Korea

Search terms
Diagnosis, Down syndrome, parent’s response.
Author contact
iyoo@yuhs.ac, with a copy to the Editor:
roxie.foster@ucdenver.edu
Funding for the study was provided by a grant
from College ofNursing, Yonsei University,
Seoul, Korea.
First received February 28, 2010; Revision
received September 13, 2010; Accepted for
publication December 27, 2010.

Abstract
Purpose. The purpose is to describe factors associated with emotional
responses of parents at the time of diagnosis of Down syndrome.
Design and Methods. Using a survey design, data on attitudes of healthcare providers,content of information, and emotional responses were collected from 131 parents in Korea.
Results. There were positive relationships between healthcare providers’
attitudes and the content of information (r = .622; p < .0001), and content of
information and parents’ responses (r = .271; p = .002).
Practice Implications. By providing positive information, healthcare
providers can help parents todevelop a more optimistic outlook on their
children’s future.

doi: 10.1111/j.1744-6155.2011.00276.x

Down syndrome is the most common genetic disorder that usually results from trisomy 21 (Allen &
Vessey, 2004). Approximately 1 of every 800–1,000
live births has Down syndrome, and this prevalence
rate is known to be similar in all racial groups
(Skotko, 2005). Even though amniocentesiscan
make accurate prenatal diagnosis of Down syndrome, the majority of families learn about their
children’s diagnosis after the birth (Skotko, 2005).
While all expecting parents may express concerns
about the health and possible defects of their unborn
babies (Sherwen, 1981), the actual birth of a baby
with a disability is usually an unexpected and often
difficult event for families (VanRiper, Pridham, &
Ryff, 1992).
The challenges and difficulties for parents of children born with Down syndrome are reported
in many studies (Bradford, 1997; Canam, 1993;
Thompson & Gustafson, 1996). Emotional reactions
of acute grief and chronic sorrow may occur as a
result of the loss of the desired healthy baby. Parents
may be overwhelmed by the responsibility of managing the children’scomplex needs and by anxiety
about the children’s future. They may also have perJournal for Specialists in Pediatric Nursing 16 (2011) 113–120 © 2011, Wiley Periodicals, Inc.

sistent feelings of guilt, shame, and social isolation.
Some parents may overcome these problems, but it
takes a long period of adaptation and adjustment.
The experience at the time of the diagnosis is critical for parentaladaptation. Parents experience
myriad feelings while coping with the diagnosis and
trying to attain their normal parental roles (Miles,
Holditch-Davis, Burchinal, & Nelson, 1999). Overcoming the initial disappointment and becoming an
effective parent can affect the development of a child
with Down syndrome (Skirton & Barr, 2010). Many
factors affect this process of parental adaptation, forexample, the nature and severity of the child’s conditions, preexisting family functioning level, cultural
background, income level, the availability of social
support, and the attitude of healthcare providers,
especially at the time of diagnosis (Ferguson,
Gartner, & Lipsky, 2000; Pelchat et al., 1999;
Rosenthal, Biesecker, & Biesecker, 2001).
Garwick, Patterson, Bennett, and Blum (1995)...