Parenting Stress in Mothers of Children with Congenital Heart Disease pptx

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Asian Nursing Research ❖ September 2007 ❖ Vol 1 ❖ No 2
ORIGINAL ARTICLE
INTRODUCTION
Approximately 2–3 of 1000 infants are born with
congenital heart disease (CHD) in Korea (Lee, Kim,
Jung, Kim, & Choi, 2001). As a result of dramatic
advances in the medical and surgical management of
CHD, 85% of infants with CHD are now expected
to survive to adulthood, and CHD is regarded as a
chronic disease rather than a terminal one (Lee,
2001). However, the management of CHD involves
repeated invasive procedures, hospitalization, and
often prognostic uncertainty. All of these can be
stressful for children and their families (Peterson &
Harbaugh, 1995). Accordingly, parents continue to
have concerns about how their child’s illness and
treatment affect their child’s daily functioning, devel-
opment, and overall wellbeing (Van Horn, DeMaso,
Gonzalez-Heydrich, & Ericson, 2001).
DeMaso, Beardslee, Silbert, and Fyle (1990)
reported that the behavioral adjustment of children
with CHD was significantly related to the level of
parenting stress. The poor psychological adjustment
Parenting Stress in Mothers of Children
with Congenital Heart Disease
Sunhee Lee
1
*, RN, MSN, Ji-Soo Yoo
2
, RN, PhD, Il-Young Yoo

2
, RN, PhD
1
PhD Candidate, College of Nursing, Yonsei University, Seoul, Korea
2
Professor, College of Nursing, Yonsei University, Seoul, Korea
Purpose The main purposes of this study were to examine the relationships among uncertainty, social
support and parenting stress in mothers of children with congenital heart disease (CHD) and to identify
the factors related to parenting stress.
Methods This was a survey study using a questionnaire. Fifty-one mothers of children with CHD were
recruited at the pediatric cardiac outpatient clinic at one university-affiliated hospital in Seoul between July 14th
and September 25th, 2006. Abidin’s Parenting Stress Index–Short Form, Mishel’s Parents’ Perception Uncer-
tainty in Illness Scale, and Brandt and Weinert’s Personal Resource Questionnaire were used to collect data.
Results The results of bivariate analysis showed that parenting stress was significantly related to social
support, ambiguity, lack of clarity, and lack of information, but was not related to unpredictability, one of
the subconcepts of uncertainty. Multiple regression analysis showed that parenting stress was significantly
related to social support and Internet information.
Conclusion Mothers who reported they had more social support and less uncertainty showed lower parent-
ing stress. Also, the Internet could be an effective method to obtain information and to share child-rearing
experiences with other mothers of children with CHD. [Asian Nursing Research 2007;1(2):116–124]
Key Words congenital heart disease, parenting, stress, uncertainty
*Correspondence to: Sunhee Lee, RN, MSN, College of Nursing, Yonsei University, 134 Sinchon-dong, Seodaemun-gu,
Seoul 120-752, Korea.
E-mail:
117
and anxiety of children with CHD were related more
to maternal anxiety and pampering than to the degree
of incapacity or severity of disease (Linde, Rasof,
Dunn, & Rabb, 1966). Mattie-Luksic, Javornisky, and
DiMario (2000) reported that the factors that helped

mothers to cope with their children’s disease were
having information about the disease, communicating
with knowledgeable professionals, understanding
cause/treatment, and participating in a support group.
One of the most significant difficulties encoun-
tered by the parents of children with CHD is an inac-
curate understanding of the problems related to the
management of chronic illness (Chessa et al., 2005).
Parents’ knowledge about their child’s health, dis-
ease, treatment, and prevention of complications may
promote better health behavior in their children by
increasing the understanding of the cardiac prob-
lems, improving compliance with treatment, and
avoiding risk-taking behaviors (Clare, 1985).
Many parents also look for support from other
parents who have had similar experiences. Meeting
with other parents creates a sense of belonging which
reduces isolation (King, Stewart, & King, 2000).
Other parents can provide a credible model of how
to cope in a positive way with exceptional life cir-
cumstances (Davis & Hall, 2005).
Mothers of children with chronic diseases
expressed the uncertainty of their children’s future.
Van Dongen-Melman et al. (1995) reported that
uncertainty and loneliness served as significant psy-
chological stressors for the mothers of children with
cancer. Boman, Lindahl, and Bjork (2003) said that
mothers of children with cancer reported higher lev-
els of uncertainty as well as anxiety, loneliness, and
depression. Since CHD is regarded as a chronic dis-

ease, mothers of children with CHD also reported
higher levels of uncertainty. Linde (1982) reported
that the mothers of children with CHD had problems
not with the severity of disease but with uncertainty
about the future, the cure plan and the outcome.
Carey, Nicholson, and Fox (2002) reported that
mothers of children with CHD suffer psychological
distress due to uncertainty and fear for their child’s
future. Sparacino et al. (1997) also said that most
parents with children suffering from CHD express
uncertainty with regard to the future of their child
and about the difficulty of pushing their child to
excel. However, it was difficult to find studies of
Korean mothers with children with CHD.
Therefore, the goals of this study were to
(a) examine the relationship between general char-
acteristics and parenting stress in mothers of children
with CHD, (b) examine the relationships among
uncertainty, social support, and parenting stress in
mothers of children with CHD, and (c) determine
the factors affecting parenting stress in mothers of
children with CHD in Korea.
METHODS
Subjects
Mothers of children with CHD were recruited at the
pediatric cardiac outpatient clinic at one university-
affiliated hospital in Seoul between July 14th and
September 25th, 2006. It was the summer break
period for elementary school children, which was
when they visited the clinic for follow-up. Since

elementary school children with CHD who have
undergone total correction usually visit the clinic for
follow-up once a year, they tend to visit the clinic
during their break period. The age of the children
with CHD ranged from newborn to 9 years old.
The purpose of the research was explained
and informed consent was obtained by the
researcher. Those who had just been diagnosed with
CHD were excluded because their experience of
the illness was not sufficient to understand the
questionnaire.
Measurements
Participants completed the self-reported question-
naire which included general characteristics, the
Parents’ Perception Uncertainty in illness Scale
(PPUS), Personal Resource Questionnaire (PRQ), and
the Parenting Stress Index–Short Form (PSI–SF).
PPUS
The original items of the PPUS (Mishel, 1983) were
derived from Mishel’s Uncertainty in Illness Scale for
Parenting Stress in Mothers of Children with CHD
Asian Nursing Research ❖ September 2007 ❖ Vol 1 ❖ No 2
Adults (MUIS-A). The PPUS consists of 31 items
and 4 subscales: ambiguity, lack of clarity, lack of
information, and unpredictability. Ambiguity refers
to the absence of cues or vagueness of cues concern-
ing the planning and carrying out of care for the
child. Lack of clarity refers to receiving or perceiv-
ing information about the child’s treatment and the
system of care as intricate and ill-defined. Lack of

information relates to the absence of information
concerning the diagnosis and seriousness of the ill-
ness. Unpredictability refers to the inability to make
daily or future predictions concerning symptom and
illness outcome (Mishel, 1997). The PPUS is a 5-
point Likert scale, and its score can range from 31 to
155, with a higher score indicating a higher level of
uncertainty. After the researcher translated the PPUS
into Korean, three professors evaluated and modi-
fied it, and a bilingual person checked the meaning
of each sentence by using reverse translation. The
coefficient α for the PPUS was .91 in a study of 272
hospitalized children (Mishel, 1983), and the Cron-
bach’s α score was .86 in this study.
PRQ
The PRQ was designed by Brandt and Weinert in
1981. The PRQ 82 was developed to measure situ-
ational and perceived social support and it was
upgraded to the PRQ 85, a self-administered tool,
by Weinert in 1987. Part 1 of the PRQ 85 consists
of 10 life situations in which an individual might be
expected to need some assistance and provide infor-
mation concerning the person’s resource and satis-
faction with the help received from the resources.
Part 2 of the PRQ 85 is a 25-item 7-point Likert
scale that measures the respondent’s perceived level
of social support. The PRQ 85 has four subscales:
intimacy, social integration, worth, and assistance
(Weinert). Scale scores range from 25 to 125, with a
higher score indicating a higher level of perceived

social support. The PRQ 85 translated by Suh and
Oh (1993) was used in this study. In a study of 132
older persons living in trailer parks or mobile home
settings, the internal consistency (Cronbach’s α) for
the PRQ 85 was .87 (Weinert). We used Part 2 of
the PRQ 85 and Cronbach’s α was .90.
PSI–SF
The PSI–SF was developed to evaluate parenting
stress by Abidin in 1990, and the PSI–SF translated
by Kim (1997) was used in this study.The PSI–SF has
three subconcepts: parental distress, parent–child
dysfunctional interaction, and difficult child. Parental
distress determines the distress that a parent experi-
ences in his/her role directly related to parenting.
Parent–child dysfunctional interaction focuses on the
parent’s perception that his/her child does not meet
the parent’s expectation and that the interaction with
his/her child reinforces dysfunctional interaction.
Difficult child focuses on some of the basic behavioral
characteristics of children that make them either easy
or difficult to manage. The PSI–SF is a 35-item
5-point Likert scale, and its score ranges from 35 to
175, with a higher score indicating a higher level of
parenting stress. Test–retest and alpha reliabilities for
the PSI–SF were .84 and .91, respectively (Abidin,
1995). Cronbach’s α was .90 in this study.
Data collection
Approval of the institutional review board of the
hospital was obtained prior to collecting data. A
research assistant was familiarized with the goal of

this study, the diagnosis of CHD, and the contents
of the questionnaire. The research assistant then
explained the goal of this study to the participants,
obtained informed consent and then collected
questionnaires at the pediatric cardiac outpatient
clinic from July 14th to September 25th, 2006. The
participants took about 20 minutes to complete
the questionnaires.
Data analysis
Descriptive statistics were generated to describe the
general characteristics of children with CHD and
their mothers. Independent sample t test, ANOVA
test, and Scheffé’s test were performed to identify
differences in the level of parenting stress according
to the general characteristics. Pearson’s correlation
analyses were performed to examine the relation-
ships among uncertainty, social support, and parent-
ing stress. Multiple regression analysis was used to
determine the factors affecting parenting stress.
S. Lee et al.
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Asian Nursing Research ❖ September 2007 ❖ Vol 1 ❖ No 2
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Parenting Stress in Mothers of Children with CHD
Asian Nursing Research ❖ September 2007 ❖ Vol 1 ❖ No 2
RESULTS
General characteristics
As shown in Table 1, the general characteristics
included children’s characteristics: cardiac anomalies,
gender, age, sibling, and operation, and mothers’

characteristics: age, education, employment, housing,
and source of information (health provider and/or
Internet).
Children’s characteristics
There were 16 infants (31.4%), 17 toddlers
(33.3%), 13 preschoolers (23.5%), and 6 school age
children (11.8%). Thirty-five children (68.6%)
reportedly had acyanotic cardiac anomalies and 16
children (31.4%) had cyanotic cardiac anomalies.
Mothers’ characteristics
Thirty-four (66.7%) mothers were full-time home
makers and 17 (33.3%) mothers worked outside
the home. Twenty-three (45.1%) mothers owned
their house, 22 (43.1%) leased, and 6 (11.8%)
rented their house. While 39 (76.5%) mothers
obtained information from a health provider, close
to one quarter of mothers (12) did not. Fourteen
mothers (27.5%) reported that they obtained infor-
mation on the Internet.
Mothers’ parenting stress
Table 2 shows the relationship between parenting
stress and general characteristics. The mothers’ par-
enting stress was significantly related to the chil-
dren’s age (p < .01) and the mothers’ level of
education (p = .03). Scheffé’s test showed that the
mothers of school age children have a higher level
of parenting stress than mothers of infants, toddlers
and preschoolers. Mothers with higher educational
level reported lower level of parenting stress. How-
ever, parenting stress was not significantly related to

the children’s cardiac anomalies.
Relationships among uncertainty, social support,
and parenting stress
Correlation analysis found that uncertainty was sig-
nificantly related to social support and parenting
Table 1
General Characteristics (N = 51)
n (%)
Children’s characteristics
Anomalies
Acyanotic 35 (68.6)
Cyanotic 16 (31.4)
Age (years)
< 1 (infant) 16 (31.4)
1–3 (toddler) 17 (33.3)
4–7 (preschooler) 13 (23.5)
> 7 (school age) 6 (11.8)
Gender
Male 25 (49.0)
Female 26 (51.0)
Sibling
Yes 34 (66.7)
No 17 (33.3)
Operation
Yes 37 (72.5)
No 14 (27.5)
Mothers’ characteristics
Age (years)
20–30 8 (15.7)
31–40 37 (72.5)

> 40 6 (11.8)
Education
Middle school 3 (5.9)
High school 21 (41.2)
College and beyond 27 (52.9)
Employment
Home maker 34 (66.7)
Working mother 17 (33.3)
Housing
Monthly rent 6 (11.8)
Leasing house 22 (43.1)
Own house 23 (45.1)
Source of information
Health provider
Yes 39 (76.5)
No 12 (23.5)
Internet
Yes 14 (27.5)
No 37 (72.5)
S. Lee et al.
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Asian Nursing Research ❖ September 2007 ❖ Vol 1 ❖ No 2
Table 2
Mothers’ Parenting Stress (N = 51)
Parenting stress
Mean SD p Scheffé’s test
Children’s characteristics
Anomalies .75
Acyanotic 83.37 17.57
Cyanotic 85.63 18.33

Age (years) < .01 a, b, c < d
< 1 (infant)
a
82.06 17.00
1–3 (toddler)
b
88.47 13.50
4–7 (preschooler)
c
72.66 10.62
> 7 (school age)
d
99.83 27.03
Gender .51
Male 84.92 20.56
Female 83.27 14.72
Sibling .07
Yes 83.79 20.27
No 84.65 11.25
Operation .36
Yes 83.48 15.78
No 85.64 22.50
Mothers’ characteristics
Age (years) .43
20–30 90.75 5.95
31–40 82.16 19.62
> 40 87.00 13.74
Education .03
Middle school 98.67 12.22
High school 89.33 17.94

College and beyond 78.37 16.13
Employment .57
Home maker 86.50 18.29
Working mother 79.24 15.71
Housing .09
Monthly rent 97.17 9.55
Leasing house 84.86 20.68
Own house 79.91 14.64
Source of information
Health provider .83
Yes 84.05 18.12
No 84.17 16.83
Internet .82
Yes 75.86 17.15
No 87.19 17.05
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Parenting Stress in Mothers of Children with CHD
Asian Nursing Research ❖ September 2007 ❖ Vol 1 ❖ No 2
stress. The correlation coefficient of uncertainty
and social support was –.477 (p < .01), and that of
uncertainty and parenting stress was .463 (p < .01).
Although the relationship between social support
and parenting stress has already been reported in
many previous studies, their relationship including
uncertainty has not yet been studied. Therefore, an
analysis of the relationships among social support,
parenting stress, and subconcepts of uncertainty—
ambiguity, lack of clarity, lack of information and
unpredictability—was performed. Parenting stress
was significantly related to social support, ambigu-

ity, lack of clarity, and lack of information, but was
not significantly related to unpredictability. As
expected, mothers who reported higher ambiguity,
less clarity, less information, and less social support
demonstrated higher parenting stress. Unpre-
dictability was not related to the other subconcepts
of uncertainty and social support (Table 3).
Factors affecting parenting stress
Table 4 summarizes the results of multiple regression
analysis. Included general variables were children’s
age and mothers’ education. Since they were signif-
icantly related to parenting stress in the prior analy-
sis, sources of information, uncertainty and social
support were also included in the analysis model.
Social support and source of information via the
Internet were statistically significant determinants of
parenting stress in mothers of children with CHD.
Social support explained 33.3% of parenting
stress in this model, while social support and the
source of information being the Internet together
accounted for 39.4% of parenting stress. Therefore,
mothers reported less parenting stress when they
had more social support and obtained information
via the Internet regardless of children’s age and
mothers’ education.
DISCUSSION
According to the results of this study, parenting
stress was significantly related to the children’s age.
Particularly, mothers of school age children reported
a higher level of uncertainty than mothers of infants,

Table 3
Relationship Between Subconcepts Uncertainty and Parenting Stress
Parenting Social
Ambiguity
Lack of Lack of
Unpredictability
stress support clarity information
Parenting stress –.577* .455* .395* .379* .059
Social support –.536* –.294** –.389* .020
Ambiguity .719* .592* .065
Lack of clarity .524* .017
Lack of information .273
Unpredictability
*p < .01; **p < .05.
Table 4
Multiple Regression Analysis of Determinants of Parenting Stress
B β tR
2
p
Social support –.644 –.559 –4.958 .333 < .01
Source of information: Internet –9.731 –.248 –2.204 .394 .032
S. Lee et al.
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Asian Nursing Research ❖ September 2007 ❖ Vol 1 ❖ No 2
toddlers and preschoolers. This might be due to the
fact that children with CHD have to deal with prob-
lems related to school activities such as physical
education classes. Horner, Liberthson, and Jellinek
(2000) reported that about 50% of the subjects
with CHD in their study were unable to participate

fully, if at all, in organized or competitive sports.
Children may also refuse to go to school or have
difficult times adjusting to school because of other
reasons. Future study is suggested to identify the fac-
tors related to parenting stress in mothers of school
age children with CHD.
Correlation analyses showed that parenting stress
was significantly related to social support. Aytch,
Hammond, and White (2001) reported in their study
of mothers of children with seizure disorder that
many parents considered the opportunity to talk to
other parents of children with the same disease help-
ful because they can share child-rearing experiences.
In addition to parent-to-parent support, the parents
reported that family members (e.g., spouse, grand-
parents, parent’s sibling), personal friends, and
members of their church community were impor-
tant sources of support.
Ambiguity was significantly related to parenting
stress. Ambiguity, which is a subconcept of uncer-
tainty, refers to the absence of cues or vagueness of
cues concerning the planning and carrying out of
the care of the child (Mishel, 1997). In other words,
ambiguity is lack of criteria for caring for the child.
Mothers who did not have sufficient information
regarding the care plan for their children reported a
higher level of parenting stress. In general, health-
care providers give information about children’s
disease and medical and surgical management. But,
mothers also want to know how to care for their

child with CHD and how to prepare for emergency
situations at home. Mothers of children with CHD
are not only concerned about the symptoms of
CHD, but also about children’s behaviors which are
within the normal boundary of discipline. Mothers
experience stress from being confused about the
level of discipline for their children.
Lack of clarity and lack of information, which are
subconcepts of uncertainty, were also significantly
related to parenting stress. Lack of clarity means
insufficient knowledge about the treatment and treat-
ment plan. Especially, mothers wanted to know the
child’s treatment plan, for example, the schedule for
echocardiogram, cardiac catheterization and opera-
tion, as well as how often they should go to the hos-
pital for follow-up. Mishel (1997) defined lack of
information as the absence of information concern-
ing the diagnosis and seriousness of illness. Chessa
et al. (2005) reported that many parents of children
with CHD do not understand the prognosis of their
child’s disease. While the majority of parents could
name the cardiac lesion and were knowledgeable
concerning surgical and catheter interventions, their
knowledge of the etiology and symptoms of CHD
were limited. Furthermore, their knowledge about
infective endocarditis and the side effects of cardiac
medications appeared to be quite deficient (Cheuk,
Wong, Choi, Chau, & Cheung, 2004).
Interestingly, unpredictability—one of the subcon-
cepts of uncertainty—was not significantly related

to parenting stress and to other subconcepts of uncer-
tainty.When a child was first diagnosed, uncertainty
was a source of fear, anxiety and stress. Once mothers
understand their child’s condition, they can develop
the coping skills to adjust to their situation and have
a new perspective in their lives (Mishel, 1990). Fur-
thermore, parents’ anxiety may not be related to the
severity of the child’s heart disease but to the parents’
individual coping style and fears (Clare, 1985). Even
with high unpredictability, mothers can adapt to
their situation and have hope for their children’s
future. So, regardless of the predictability of the
child’s disease, mothers’ coping skills are the impor-
tant deciding factor. Thus, it is necessary to develop
a nursing intervention for mothers of children with
CHD that can cultivate effective coping skills.
Multiple regression analysis showed that social
support and information obtained from the Internet
were significant determinants of the level of parent-
ing stress. Parents used the Internet to communicate
with other parents about their experiences as well as
to obtain useful information. The need to commu-
nicate with other parents who shared similar expe-
riences and the desire to find information to gain a
123
better understanding of what was happening to their
child were the primary motivating factors for using
the Internet (Aytch, Hammond, & White, 2001). It is
common for many parents in Korea to use the Inter-
net to share their experiences and seek information

about their child’s illness and behaviors. Using the
Internet is not only helpful in getting practical infor-
mation but also provides a channel to obtain social
and emotional support from other parents with sim-
ilar problems. However, some information from the
Internet can be incorrect. Therefore, it is suggested
that nurses actively participate in facilitating and
monitoring such websites to provide accurate infor-
mation. Further studies are suggested in this area. It
is especially necessary to identify the specific factors
that cause parenting stress at the different develop-
mental ages of children with CHD.
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