JAN

JOURNAL OF ADVANCED NURSING

ORIGINAL RESEARCH

Parenting under Pressure: a grounded theory of parenting young

children with life-threatening congenital heart disease
Gwen R. Rempel, Vinitha Ravindran, Laura G. Rogers & Joyce Magill-Evans
Accepted for publication 21 April 2012

Correspondence to G.R. Rempel:

e-mail: gwen.rempel@ualberta.ca
Gwen R. Rempel PhD RN
Assistant Professor
Faculty of Nursing, University of Alberta,
Edmonton, Alberta, Canada
and Department of Pediatrics, Faculty of
Medicine and Dentistry, University of
Alberta, Edmonton, Alberta, Canada
Vinitha Ravindran PhD RN
College of Nursing, Christian Medical
College, Vellore, Tamil Nadu, India
Laura G. Rogers MScRS OT(C)
Research Associate
Faculty of Nursing, University of Alberta,
Edmonton, Alberta, Canada
Joyce Magill-Evans PhD OT(C)
Professor
Faculty of Rehabilitation Medicine,
University of Alberta, Edmonton, Alberta,
Canada

REMPEL G.R., RAVINDRAN V., ROGERS L.G. & MAGILL-EVANS J. (2013)

Parenting under pressure: a grounded theory of parenting young children with lifethreatening congenital heart disease. Journal of Advanced Nursing 69(3), 619630.
doi: 10.1111/j.1365-2648.2012.06044.x

Abstract
Aim. To report a grounded theory study to describe the process of parenting young
children who have survived hypoplastic left heart syndrome to inform parent-focused interventions.
Background. Technological advances in paediatric cardiology worldwide have
improved the survival rates for young children with hypoplastic left heart syndrome
who undergo staged surgical palliation. These children, however, are at risk for lifethreatening complications and parents are charged with the responsibility to monitor their children at home with minimal support and guidance from healthcare
professionals once home.
Design. A constructivist grounded theory study.
Method. The study was conducted in 20062008. Participants were 25 parents (15
mothers, 10 fathers) and 28 grandparents (17 grandmothers, 11 grandfathers) of 15
young children (6 months45 years) who had undergone the Sano surgical
approach for hypoplastic left heart syndrome. The 53 interviews were digitally
recorded, transcribed and analysed using open and focused coding, constant
comparative analysis and memoing.
Findings. A process of Parenting under Pressure emerged that was characterized by
four overlapping and re-emerging phases: (1) realizing and adjusting to the inconceivable; (2) growing increasingly attached; (3) watching for and accommodating
the unexpected; and (4) encountering new challenges.
Conclusions. In-depth understanding of the phases of Parenting under Pressure
provides direction for nurses to support parents of children who survive hypoplastic
left heart syndrome. Interventions that help carers of children with complex health
conditions move through the phases of our Parenting under Pressure process may
help them safeguard the survival of their children, and their own survival as parents
as they manage multiple demands.
Keywords: congenital heart disease, grounded theory, hypoplastic left heart
syndrome, nursing, parenting, qualitative research

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G.R. Rempel et al.

Introduction
Survival rates for children who undergo multiple life-saving
surgeries during infancy and early childhood for hypoplastic
left heart syndrome (HLHS) have improved worldwide
(Barron et al. 2009). These children, however, are at risk
for arrhythmias, progressive heart failure, growth failure
and stroke (Ghanayem et al. 2006, Ohye et al. 2008,
Tweddell et al. 2009, Ghanayem et al. 2010). In addition,
there is evidence of neurodevelopmental deficits (Atallah
et al. 2008, Snookes et al. 2010). There is an increasing
number of studies about the relationship between parenting
responses and practices and child outcomes in families of
children with complex congenital heart disease (CHD)
including HLHS (Brosig et al. 2007a, McCusker et al.
2007, Vrijmoet-Wiersma et al. 2009). Implications from
these studies to develop psychosocial or educational interventions to support parents are consistent with repeated
recommendations in paediatric cardiology to attend to the
needs of parents and families (e.g. Mussatto 2006, Human
2009).
Nurse researchers from Canada (e.g. Einarson & Arthur
2003), Korea (e.g. Tak & McCubbin 2002), Sweden
(Morelius et al. 2002), Taiwan (Chen et al. 2004, 2005),
Thailand (Srichantaranit et al. 2010), Turkey (Yildiz et al.
2009) and the USA (e.g. Uzark & Jones 2003, Brosig et al.
2007a, 2007b, Uzark et al. 2008, Pridham et al. 2010,
Torowicz et al. 2010) have identified numerous challenges
for children with CHD and their families. All this research
remains at an assessment or descriptive level (Anderson
et al. 2010) and few studies include multiple family members.

of fathers met diagnostic criteria for acute post-traumatic

stress disorder (Helfricht et al. 2008).
Given the evidence of the risk of psycho-emotional
difficulties for parents of children with CHD and the
relationship between parenting and child outcomes, understanding the processes of parenting and identifying interventions is important. One recent study informed by stress and
coping theory, tested an intervention to bolster maternal
adjustment and coping following neonatal heart surgery
(McCusker et al. 2010). The hospital-based intervention
involved mothers only. Six months later, there was decreased
maternal anxiety and improved child cognitive outcomes
compared with controls. Research is needed to determine the
needs of both mothers and fathers and to develop appropriate
community-based interventions.
Through a qualitative study with parents of young
children with HLHS who had undergone the Norwood
surgical approach between 19972001 when the mortality
rate was 50%, we identified a process of Safeguarding
Survival (Rempel & Harrison 2007). Parents were keenly
aware that their child might die during or between surgeries.
They, therefore, safeguarded their childs precarious survival
by taking charge of their childs complex care at home,
protecting their child from infection and struggling for
balance between protecting their child and treating their
child normally. Parents managed the demands of parenting
by involving others, often grandparents, in the care and
monitoring of their child. Mortality rates for surgically
palliated HLHS have decreased to 20% (Atallah et al. 2008)
necessitating additional research given the new treatment
era.

The study
Background
Parents play a key role in childrens health and development
(Government of Canada 2008). Parenting children with
HLHS who are at risk of mortality and morbidity merits an
in-depth understanding. In a study of 26 children with CHD,
including 13 children with HLHS, parents reported lower
expectations and more permissive parenting than was
reported by parents of children without long-term illness
(Brosig et al. 2007a). Parenting style, maternal mental health
and maternal worry about the childs health were stronger
predictors of behavioural outcomes for 4-year survivors of
serious CHD than disease or surgical factors (McCusker et al.
2007). Parental stress significantly correlated with the childs
psychosocial health for 5-year-old children with CHD
(Majnemer et al. 2006). After their childs discharge from
hospital following cardiac surgery, 16% of mothers and 13%
620

Aim
Our aim was to generate evidence to inform clinical
practice with parents of young children with HLHS based
on the perspectives of both parents and grandparents using
a recent treatment cohort. The research question was:
What is the process of parenting young children with
HLHS from the time of diagnosis through the survival of
the first two surgeries and survival or anticipation of the
third surgery?

Design
We used a grounded theory design (Glaser 1978, 1992, 2002,
Charmaz 2006) to explore parenting of children with lifethreatening CHD.
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Parenting under pressure

Participants

Data analysis

Based on the results of our previous study, which showed that

grandparents played an active role in supporting parents of
young children with HLHS, we purposively sampled both
parents and grandparents of children less than 5 years of age
with HLHS who had undergone the Sano-Norwood operation shortly after birth and were being monitored and/or
awaiting further surgery. Parents were recruited by a nurse
practitioner in a tertiary paediatric cardiac surgical programme between November 2006September 2008. Fourteen
of the 22 families invited to participate took part in the study,
with one additional family recruited by one of the participants. Parents recruited grandparents. Efforts were made to
recruit families from diverse backgrounds and family configurations, but only a single contact was possible due to the
nurse practitioners workload.

Analysis in grounded theory is a multi-step iterative process

(Eaves 2001). Transcriptions were initially analysed lineby-line for words or phrases consistently used by participants
to talk about parenting (Charmaz 2006). This step was
followed by grouping similar words and phrases together into
themes (Glaser 1978). Themes were organized in tables to
show frequency and to compare themes between parent and
grandparent accounts. Data from parents and grandparents
were similarly coded to most of the themes. Areas of
difference between the parent and grandparent data were
incorporated into the analysis as were differences between
data from families whose babies were diagnosed prenatally or
postnatally. Coding memos denoted and synthesized this
constant comparative analysis (Glaser 1978). They were an
essential component of the analytical process (Eaves 2001,
Charmaz 2006) and memoing by multiple readers led to rich
analysis. Participants were added until no new information
was obtained (Charmaz 2006). Further conceptualization
and theoretical memoing identified a multi-phased process of
parenting young children with HLHS.

Data collection
In keeping with grounded theory design, data collection and
data analysis occurred simultaneously (Glaser 1978, 1992,
2002, Charmaz 2006). Data were collected via single
individual telephone or in-person recorded interviews that
were transcribed verbatim. Participants were asked to recount
experiences from the time of the childs diagnosis to the
present. Two interviewers who were experienced in qualitative interviewing used the same interview guide that included
open-ended questions and prompts. (See supporting information Data S1 in the online version of the article in Wiley
Online Library.) As data collection and analysis progressed,
emerging topics such as supports were explored in subsequent
interviews. The interviewers, along with the first author, met
frequently to discuss questions for subsequent interviews.
Data were managed using NVivo 8 software (QSR International Pty Ltd. 2008). As data collection and analysis
progressed, theoretical sampling was employed to ensure a
full range of parenting experiences from multiple family
members and from each stage of the surgical trajectory.

Ethical considerations
The universitys Health Research Ethics Board approved the
study. Protocols for confidentiality between participants from
the same family were crucial. For example, if one parent
queried, Didnt my wife explain that complication to you?
the interviewer would not disclose the answer but sought the
spouses perspective. Codes to identify participants intentionally do not indicate family membership to maintain
confidentiality among family members.

 2012 Blackwell Publishing Ltd

Rigour
Verification strategies to address both reliability and validity
included ensuring methodological congruence between
research question and the research design, including for
example the interview questions (Morse et al. 2002). The
principal investigator piloted the interview guide. Revisions
were required to verify that data from grandparents pertained
to parenting not grand-parenting resulting in questions such
as: From your perspective, what was the time around your
grandchilds surgery like for your son and daughter-in-law?
Data were synthesized beyond simple codes and rigorous
theoretical thinking led to grounded theory development
(Morse et al. 2002).

Findings
These findings were obtained from the families of 15 children
with HLHS at different stages of treatment. Children with
HLHS typically have three surgeries between birth and
35 years (Barron et al. 2009). All children had survived
the first two surgeries, the Sano and Glenn and four children
had had their third surgery, the Fontan operation. The data
set included 53 interviews with 15 mothers, 10 fathers, 17
grandmothers and 11 grandfathers. (Refer to Table 1 for
demographic data). The quotes used to illustrate the findings
come from all 15 families (i.e. 11 mothers, 5 fathers and 5

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G.R. Rempel et al.

Table 1 Demographic information.

Parent demographics

Parents

Fathers

Mothers

n
Mean age (years)
Age range (years)
Education
University/college graduate
Some college/university
High school graduate
Some high school
Employment
Working full time
Working part time
Full time homemaker
Maternity leave
Ethnocultural background

25
320
2738

10
320
2737

15
319
2738

13
6
5
1

5
1
3
1

8
5
2
0

15
10
5
3
0
3
3
0
3
4
0
4
All parents were Canadian

Family demographics

Phase 1: Realizing and adjusting to the inconceivable

You kept on going

Families

Family income (CAD)

<$25,000
$26,00045,000
$46,00065,000
$66,00085,000
>$85,000
Geographical location
Urban
Rural

1
3
2
5
4
6
9

Child demographics

Children

Boys

Girls

n
Mean age (months)
Age range (months)
Prenatal diagnosis
Postnatal diagnosis
Norwood/Sano & Glenn
surgeries completed
Norwood/Sano, Glenn, & Fontan
surgeries completed

15
236
658
10
5
11

9
216
642

6
265
658

0
4

Grandparent
demographics
n
Mean age (years)
Age range (years)
Ethnocultural
background

Grandparents

social process involved four phases: realizing and adjusting

to the inconceivable, growing increasingly attached,
watching for and accommodating to the unexpected and
encountering new challenges. The phases overlapped and
re-emerged as the child moved from diagnosis to initial lifesaving surgery, to going home and awaiting or experiencing
subsequent surgeries. Although participants described periods
when parents could breathe a bit more easily, uncertainty
about outcomes including the possibility that their child
could die, kept parents in a state of alertness and contributed
to new realizations in each phase about what was ahead for
their child and themselves in their family context.

Grandmothers

Grandfathers

28
17
11
587
5066
All Canadian or Canadian/European

Realizing and adjusting to the inconceivable was associated

with two sub-processes: realizing the precariousness of
survival and adjusting expectations. It was inconceivable
that their infant had a potentially lethal condition as parents
and grandparents alike had expected a healthy child; not
realizing that things went wrong these days. (GM1) A
mother of a postnatally diagnosed baby described feeling
more scared than anything and devastated that her baby
was dying of course. (M2) As parents acknowledged how
misaligned the potential for death was with their expectations
of a healthy baby, they simultaneously began to adjust
expectations. A mother whose baby was diagnosed prenatally
said that it sucked carrying a sick child and yet also
described her adjustment:
You kept on going. You had to enjoy your pregnancy, cause if you
didnt, you were just going to make things worse. (M3)

Realizing that their baby would die without treatment poised

parents to make treatment decisions that were urgent related
to a progressing pregnancy or a critically ill baby postnatally.
Not only did parents have to adjust expectations about their
sick baby but they also had to adjust their expectations
concerning their family given the new demands related to a
sick child:
They not only had to deal with [child with HLHS] and his problems
but they had to deal with [sibling], with their jobs, mortgage

grandparents). Participant codes are not included in the text

for ease of reading; a table of quotes as per the source is
provided. (See supporting information Table S1 in the online
version of the article in Wiley Online Library.)
Parenting under Pressure characterized the interrelationships between the families circumstances and parenting
behaviours and interactions with their child. This iterative
622

payments and everything else. (GM4)

The parents ability to come to terms with a potentially

devastating set of circumstances in a relatively short time
period was further evident in their accounts of their babys
first surgery. A lot of the pressure came off (GF5) after the
first surgery related to the babys miraculous (M6, M7)
survival, and the parents and grandparents recalled that they
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JAN: ORIGINAL RESEARCH

just felt relieved and could all kind of function seminormally (GF5) for the remainder of that initial hospitalization, until the next surgery. Ongoing survival fuelled parental
hope and worry as did the inconceivability of their child
dying and their growing attachment to their baby.

Parenting under pressure

him. (M12) Parents vividly described when they started to

see their child as a baby not a lump (M12) and then as their
baby. As sedation lessened, parents were often the first to
notice movements.
You were looking at this baby thats not really moving. Id always be
playing with her hand and every once in awhile she would grab my

Phase 2: Growing increasingly attached I actually held

her

finger and then I wouldnt want to tell the nurse because they would

Growing increasingly attached was associated with the subprocesses of seeing the baby as their child and imagining the
future for their child. The tension in this second phase related
to parents desire to physically and emotionally nurture their
baby while wanting to protect themselves in case their baby
did not survive. Additional barriers to seeing the baby as their
child now and in future were the high technology care in
hospital and the all-consuming care routine at home.
Parents gave accounts of babies who were diagnosed
prenatally (in contrast to postnatally) being removed from the
delivery room immediately after birth for transfer to the
neonatal intensive care unit. Normal skin-to-skin time,
picture taking and interaction with family members did not
happen for these families. One father described this terrible
time like we didnt have a child because they took her
away (F8). One mother reflected:

Being able to touch and hold the baby provided a sense of

attachment for parents. So I got to hold her first and that
was, that was pretty neat....I actually held her. (F8)
Once home, the all-consuming care, especially between the
first and second surgeries contributed to parents feeling more
like nurses than parents: The challenging thing is to squeeze
everything in the day. (M14) For one mother, her brief
moments of feeling like a parent were bathing her baby Its
just the water or the relaxation of it, just kind of peaceful.
Nothings rushed. Nothings hurried. Nothings important....hes having a good time. (M3) The challenge during
this phase was that the growing parent-child attachment
intensified concerns for their childs future related to repeated
medical events and future surgeries.
Comparing parent and grandparent data about attachment
showed that parents and grandparents similarly recounted
the processes of growing increasingly attached. Notably
absent from both the parents and grandparents were accounts
of grief or regret, or reluctance to take on extensive
caregiving responsibilities. Neither the parents nor the
grandparents questioned the appropriateness of monitoring
such a sick baby at home. Everyone wanted the child at home
despite having to watch for the unexpected.

A mother that has a baby that theyre able to bond with right away,
its something so special. When youre put in this situation, which is
no ones fault, it just makes it tough because you dont have that
instant bonding. (M9)

Even when parents were with their baby in the neonatal or

paediatric intensive care unit (PICU) the life-saving care (e.g.
mechanical ventilation, medication-induced paralysis) contributed to parents not being able to see the baby as their
child. They were also hindered by realistic fears.
We didnt know if she would make it through the first surgery or
anything.... not to say youre detached but youre a bit guarded,... I
loved her and I knew that we wanted to keep her but you dont
connect. (M10)

There was minimal evidence in the parents accounts of

healthcare professionals encouraging parents to assume a
parenting role while their babies were receiving intensive
care. Although most parents were constantly present, many
felt like observers. A father recalled thinking shes so close
and yet so far away, (F11) as he watched his baby in the
PICU. One mother said I didnt really feel like she was my
baby till we got her home. (M10) Parents recounted
professionals who kept telling us it was better for [baby]
for us to get a lot of rest....Theres nothing we could do for
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give her more sedative. (F8)

Phase 3: Watching for and accommodating to the

unexpected You keep your guard up (M10)
A third phase of Parenting under Pressure required parents to
recognize potential problems and make critical decisions in
response to changing conditions and new crises. As a
grandmother recalled, they gained first-hand knowledge
about the unpredictability of HLHS during the neonatal
period:
They didnt know from one day to the next how [child with HLHS]
was doing. Hed do good and then something else would happen and
hed be rushed in for another operation. (GM15)

Even when the child was home after surgery, all participants
described the ongoing influence of uncertainty. A father said,
Youre always hoping for the best but have in your mind that
things may actually not work out that well, (F16) and a
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G.R. Rempel et al.

mother stated: you keep your guard up. (M10) Parents were
trained to closely monitor their childs health for the
unexpected.
Several parents recognized a problem, made critical decisions and attributed their action to averting a crisis for their
child. One mother noticed her sons laboured breathing on
returning to their rural home following a cardiac catheterization. She promptly took him to the local emergency
department and the child was airlifted back to the tertiary
centre: Ive never seen somebody struggle so much for air in
my life. (M3)
Another family whose baby had blue spells when in the car
seat made two high-speed trips to the hospital. The first time
the mother recognized the babys change in colour as a
dramatic drop in oxygen saturation. The parents instantly
decided to speed to the hospital rather than call 911. The
second time, the ambulance was dispatched to meet them and
the mother recalled:
He [husband] was driving of course obscene speeds cause he wanted

Following the second surgery healthcare professionals

advised parents that their child required less intense monitoring in relation to improved health status and transition to
another developmental stage. Parents described this process:
With the first surgery we didnt want to leave him screaming because,
besides the paranoia of his shunt possibly giving way... he needed to
gain weight and we left him in the crib once and he screamed and he
puked so... we went to tremendous lengths to make sure he was as
calm as possible at all times so he would heal as much as he possibly
could. Whereas now they just tell us to treat him like a normal baby.
Now hes crying himself to sleep. (F20)

The iterative nature of the phases of Parenting under

Pressure was evident as parents encountered new challenges
concerning their childs uncertain survival and returned to
the phase of realizing the inconceivable. With increasing
attachment it became more difficult imagining how they
would relinquish their child for the next surgery and their
anxiety intensified:

to get her into the hospital and we were supposed to meet the

Now with this third [surgery] coming up, hes totally a person. You

ambulance but...we decided that instead of waiting, cause she was

know you cannot imagine your life without him, so this ones going

turning more and more blue by the instant, that we would take her to

to be a tough one. So as they grow into people, then they grow in

the closest hospital. (M17)

your heart. (F21)

Data about detailed weight and oxygen monitoring, tube

feeding and medication administration came from the
parents, not the grandparents. Parents clearly stated that
they did not allow others, including grandparents, to be
responsible for medications and tube feeding and, thus it
was not surprising that grandparents did not give accounts
of these monitoring tasks. Data provided by the grandparents, more than the parents, recognized the complex care
that the parents were providing and recognized the parents
expertise.

Parents faced a future where the potential for difficulties did

not diminish. A grandmother described a new challenge
about parents letting their preschool son with HLHS be
more involved with other children and to grow up as normal
as possible:

Phase 4: Encountering new challenges This next

handoff is going to be a nightmare (M18)

I think about what happens when hes a teenager and he gets in a

One of the key aspects of Parenting under Pressure was that it

was unrelenting as parents encountered new challenges
during transitions between hospital and home and with
developmental transitions. Pressure built during preparation
for the transition home after the first surgery. After adjusting
to life at home with a sick baby, the pressure built again as
they anticipated the transition back to hospital for the second
surgery. Caregiving demands lessened after the second
surgery but uncertainty about outcomes for their child
persisted. It was repeatedly acknowledged among the participants that the childs heart problem was always in the back
of their minds. (GM19)
624

Theres always, what if he overdoes it? What if this happens? More

so than a normal family. What if the [heart valve] leak starts leaking
faster? Theres always a little bit more concern. (GM19)

Parents easily projected their thoughts to the future as

reflected by this mother:

fight and is he going to get hit in the chest? Is he going to die?...What

about when he goes to school... I know he doesnt live in a bubble
and we do go out, but...its the constant worry if hes going to get
sick. (M22)

The comparative analysis of the parent and grandparent

data revealed that the grandparents provided further context
data for parental responses including health issues of the
parents, for example, which the parents did not mention.
The most highly coded themes by parents and grandparents
involved the life-threatening nature of HLHS, its unpredictability and the overwhelming and all-consuming nature of
caregiving. Similarly, both the parents and grandparents
provided accounts of the exchange of emotional and
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instrumental support between spouses and between the

parents and grandparents. It was clear that Parenting under
Pressure was understood in these families with appropriate
responses. As one grandfather indicated, When I found out
[grandson] was sick, I retired If they need my help, Ill
help them.

Discussion
Core process: Parenting under Pressure
Grounded theory development helps to identify social
processes that contribute to theoretical understandings to
give direction for intervention and hypotheses for further
investigation (Craig et al. 2008). This study identified a core
process that reflects the current treatment, environment faced
by parents who choose life-saving surgery with its risks of
mortality and morbidity for their child with HLHS. It is
unlikely that the treatment strategies, stresses and barriers
parents must deal with will change in the near future without
intervention.
Parenting under Pressure with its four phases (realizing and
adjusting to the inconceivable, increasing attachment, watching for and accommodating to the unexpected, encountering
new challenges) (see Figure 1) gives healthcare professionals
including nurses a preliminary yet promising theoretical base
from which to begin intervention. These findings also further
develop our conceptualization of Safeguarding Survival from
the earlier qualitative study of parenting children with HLHS
(Rempel & Harrison 2007). It is likely that these findings
have relevance for children with other types of life-threatening illnesses that render them medically fragile during infancy
(Docherty et al. 2002). In each phase of Parenting under
Pressure, the resilience of parents is evident, consistent with

Phase 1:

Realizing and adjusting to the inconceivable

Realizing the precariousness of survival
Adjusting expectations

Phase 2:

Growing increasingly attached

Seeing the baby as their child
Imagining the future for their child

Phase 3:

Watching for and accommodating the unexpected

Recognizing potential problems
Making critical decisions

Phase 4:

Encountering new challenges

Transitions between hospital and home
Developmental transitions

Figure 1 Parenting under Pressure process.

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Parenting under pressure

the childhood long-term illness literature (Rolland & Walsh

2006, Walsh 2006). The strength of our findings is that in
each phase there is also evidence of issues parents encounter
that may be amenable to intervention.
Phase 1: Facilitate adjustment to loss and persistent
uncertainty
Consistent with two classic works, the parents in this study
had little time to adjust to the loss of their envisioned perfect
baby as they were immersed in caring for a seriously ill baby
(Solnit & Stark 1961, Garson et al. 1978). Even when the
HLHS was diagnosed prenatally and the parents had time to
reflect on the loss of their expectations for a perfect child, the
findings indicated that parents spent little time thinking about
this and quickly adjusted their expectations. Of potential
concern is that the parents stories did not include a grieving
process in contrast to previous research (Hinoki 1998,
Fernandes 2005) and the clinical nursing literature (Upham
& Medoff-Cooper 2005). There was no evidence of ongoing
grief or chronic sorrow as discussed by other researchers
(Kearney & Griffin 2001, Hobdell 2004, Hobdell et al. 2007,
Bowes et al. 2009). The relationship between unresolved
grief and depression is well established (Gordon 2009, Stroebe et al. 2010). In our study, the parents apparent resilience
may conceal unarticulated and perhaps unresolved grief
issues that may help to explain the findings of depression in
studies of parents of children with CHD (Rona et al. 1998,
Lawoko & Soares 2006). Upham and Medoff-Cooper (2005)
acknowledged that parents need to grieve but did not
recommend specific interventions beyond addressing parents
need for information.
Of additional concern is that parents in this study were
rarely certain about what would happen next in relation to
their child with HLHS. Uncertainty has been reported in
studies of mothers with CHD since the 1960s (Glaser et al.
1964, Linde et al. 1966, Gudermuth 1975). A mixed methods
nursing study identified uncertainty as a key theme that
differentiated mothers of young children with CHD from
mothers of healthy children (Carey et al. 2002). Carey et al.
hypothesized that the mothers responded to persistent
uncertainty by sustained vigilance in monitoring their childs
ongoing health status. Their conclusion helps explain why
parents in our study were effective in watching for and
accommodating the unexpected. For mothers of children with
undiagnosed asthma, uncertainty about their childs unending illness had mothers searching for answers and demanding
the attention of healthcare professionals until a diagnosis was
made (Horner 1997).
The effects of persistent uncertainty have not been
verified specifically in parents of children with CHD. A
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G.R. Rempel et al.

What is already known about this topic

Parents of children with complex congenital heart
disease are at risk for psycho-emotional difficulties.
Children with complex congenital heart disease are at
risk for neurodevelopment, emotional and behaviour
problems and there is some evidence of a relationship
between parenting and child outcomes in this
population.
Most studies of parents of these children are at an
assessment or descriptive level with only one recent
intervention study.

What this paper adds

The process of Parenting under Pressure explained the
experiences of families of children with hypoplastic left
heart syndrome.
Parenting under Pressure highlights particular
challenges for parents at different stages of their young
childs illness trajectory that are iterative and persistent
in nature.

Implications for practice and/or policy

An in-depth understanding of parenting processes will
facilitate development of interventions that may
increase the quality of life for the child and family.
The parenting process identified in this study may
increase our understanding of parenting of young
children with other complex congenital health
conditions.

review of child health literature through the lens of

Mishels uncertainty theory (Mishel 1983, 1990, 1995,
1997, 1999) has shown that parental psychological distress,
measured globally or indexed by anxiety, depression,
cognitive disturbances or helplessness, has repeatedly been
associated with uncertainty (Stewart & Mishel 2000). The
sub-optimal outcomes of parents of children with CHD,
including anxiety, depression and distress (Rona et al.
1998, Lawoko & Soares 2003, 2006, Wray & Sensky
2004) may be related to parental uncertainty about their
childs CHD-related outcomes and give an entry for
intervention.
Phase 2: Promote parent-child attachment
This study found physical and emotional barriers to early
parent-child interaction with limited evidence of staff initia626

tives to promote parent-child attachment. Pridham et al.

(2010) studied parenting motivations during the first year of
life of children with complex CHD using attachment-caregiving theory. Key findings included parents concerns about
the parent-infant relationship and nurturing growth, and
development and preserving the childs life. Israeli mothers of
children diagnosed with CHD during the first year of life selfreported their attachment style and mental health at the time
of diagnosis and 1 and 7 years later (Berant et al. 2008).
These authors identified a relationship between avoidant
maternal attachment at the time of the babys diagnosis and
the emotional health of children especially in the subgroup of
children with the most severe CHD. These children were
most like those with HLHS. Goldberg et al.s (1991) classic
study indicated that significantly fewer infants with CHD, in
comparison with healthy infants, had secure relationships
with their mothers; more were insecure-avoidant. Parental
stress was not associated with insecure attachment and the
authors hypothesized that it may be uncertainty that interferes with the formation of a secure attachment, rather than
the illness per se (p. 665).
The broader literature indicates the important relationship
between parent-child attachment and child neuro-behavioural, emotional, social and biological development (Mercer
2006, Newton 2008, Hughes 2009, Schore 2009). There is
increasing evidence of developmental delays (Creighton et al.
2007, Karsdorp et al. 2007, Atallah et al. 2008) and longterm emotional challenges (Miatton et al. 2007, Nousi &
Christou 2010) in children with complex CHD. The chronic
stressful dysregulating interactions in the infants early social
environment of intensive care and monitoring that saved the
babys life may have implications for long-term emotional
and behavioural development and adjustment (Schore 2005).
Early attention to social development and to parent-infant
relationships is needed.
Phase 3 and 4: Ensure adequate knowledge and skills for
caregiving
There is considerable evidence to inform parent-focused
education interventions (Griffin 2002, Pye & Green 2003a,
2003b, McGrath & Kolwaite 2006, Medoff-Cooper et al.
2010). Still, a literature review of articles published between
1981 and 2004 (Chessa et al. 2005, Lawoko 2007) and
additional studies (Cheuk et al. 2004, Chessa et al. 2005)
show there is consensus that a substantial proportion of
parents of children with CHD may not receive adequate
information about the ill-childs condition, treatment and
medical prognosis. Although prenatal diagnosis appears to
facilitate parental knowledge, authors of a study of 50 families reported that all parents had a suboptimal understanding
 2012 Blackwell Publishing Ltd

JAN: ORIGINAL RESEARCH

of CHD when their infant was first discharged (Williams

et al. 2008).
In contrast to prior findings of inadequate knowledge,
parents in this study had advanced knowledge that enabled
them to make critical decisions based on assessment of their
childs status. The change in surgical approach from the
Norwood to the Sano-Norwood was expected to improve
survival rates and was accompanied by a parent education
intervention related to weighing their infant and monitoring
oxygen saturations (Ghanayem et al. 2006, Feb). The education component was not formally evaluated, but may have
contributed to the expert knowledge and skills for caregiving
of the well-educated parents in this study.

Parenting under pressure

Funding
This study was funded by the University of Alberta Hospital
Foundation and the University of Alberta. The study was
conducted during the principal investigators (GR) Mazankowski Alberta Heart Institute Clinical Fellowship funded by
the TD Financial Group.

Conflict of interest
No conflicts of interest to disclose.

Financial disclosure
No financial relationships to disclose.

Study limitations
This cross-sectional convenience sample included well-educated parents and grandparents apparently capable of handling the demands related to young children. We did not
gather information about the families who chose not to
participate. A more diverse sample of families would
strengthen the study. In addition, given how busy these
families were we elected to only interview each participant
once. Further longitudinal research with this sample to learn
about the trajectory of parenting issues and their association
with child outcomes over time is warranted to further our
understanding of how Parenting under Pressure evolves over
time for particular families.

Conclusion
The process of Parenting under Pressure highlights challenges
experienced by both mothers and fathers of children with
CHD and draws attention to parental ability, resourcefulness
and resilience. The findings direct healthcare practitioners to
fully acknowledge parents as key allies and to support their
vital caregiving role in safeguarding their childs ongoing
survival. An in-depth understanding of this multi-phased
parenting process facilitates development of specific interventions for each phase to optimize outcomes for the child
and family.

Acknowledgements
We acknowledge with gratitude the parents and grandparents
who participated in this study, Christy Nickerson Rak,
Research Coordinator, Sandra MacPhail, Project Coordinator, Bonnie Wademan, Research Assistant, and Lois Hawkins, Nurse Practitioner, Pediatric Cardiac Sciences, Stollery
Childrens Hospital for her assistance with recruitment.
 2012 Blackwell Publishing Ltd

Author contributions
All authors meet at least one of the following criteria
(recommended by the ICMJE: http://www.icmje.org/ethical_1author.html) and have agreed on the final version:
substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data;
drafting the article or revising it critically for important
intellectual content.

Supporting Information
Additional Supporting Information may be found in the
online version of this article:
Data S1. Interview Guide - Parents; Interview Guide Grandparents.
Table S1. Quotes by Source.
Please note: Wiley-Blackwell are not responsible for the
content or functionality of any supporting materials supported by the authors. Any queries (other than missing
material) should be directed to the corresponding author for
the article.

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