Intensive and Critical Care Nursing (2011) 27, 143150

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ORIGINAL ARTICLE
A qualitative interpretive study exploring parents
perception of the parental role in the paediatric
intensive care unit
Kaitlin E. Ames
a,
, Janet E. Rennick
b,c
, Sophie Baillargeon
b
a
Paediatric Intensive Care Unit, The Hospital for Sick Children, Toronto,Ontario, Canada
b
Montreal Childrens Hospital, McGill University Heath Centre, Montreal, Quebec, Canada
c
School of Nursing & Department of Paediatrics, Faculty of Medicine, McGill University, Montreal, Quebec, Canada
Accepted 15 March 2011
KEYWORDS
Parent experience;
Parents perception;
Paediatric intensive
care unit;
PICU;
Intensive care;
Parental role
Summary
Objectives: The purpose of this study was to explore parents perception of the parental role
in a tertiary care Canadian university afliated hospitals paediatric intensive care unit (PICU).
Research methodology: A descriptive interpretive design was used with a purposive hetero-
geneous sample to reect the range of children and parents normally admitted to the PICU.
Semi-structured interviews were conducted with seven parents. Interview data were collected
and analysed using the constant comparative method.
Findings: Three main themes emerged: (1) being present and participating in the childs care;
(2) forming a partnership of trust with the PICU health care team; and (3) being informed of
the childs progress and treatment plan as the person who knows the child best.
Conclusion: Enhanced understanding of the parental role in the PICU from the perspective of
parents can help guide the development of strategies to more effectively support parents and
promote parenting during this extremely stressful time.
2011 Elsevier Ltd. All rights reserved.
Introduction
Admission of a child to the paediatric intensive care unit
(PICU) is an agonising experience for a parent. Fearful for
their childs survival, and in a foreign and highly techni-
cal environment, parents must surrender their responsibility
as protector and primary caregiver to healthcare profes-

Corresponding author. Tel.: +1 416-813-6486.

E-mail address: kaitlin.ames@sickkids.ca (K.E. Ames).
sionals (Gillis and Rennick, 2006). Communication is more
difcult as children are often sedated and intubated, and
their appearance, emotions and behaviours are often chan-
ged. Parents may feel immobilised and experience a sense
of helplessness in not knowing how to care for their child
(Shudy et al., 2006).
Since the 1980s, parents have consistently identied alte-
ration in their role as they transition from being parent of
a well child to parent of a critically ill child as a tremen-
dous stressor (Shudy et al., 2006). Despite this, few studies
have used qualitative methodologies to better understand
the nature of parental role alteration from the parents
0964-3397/$ see front matter 2011 Elsevier Ltd. All rights reserved.
doi:10.1016/j.iccn.2011.03.004
144 K.E. Ames et al.
Table 1 Interview guide.
Question
1 Perhaps we can begin with your telling me a little bit about your experience in the PICU?
2 As a parent you are used to taking care of your childs needs in a certain way and you make sure he/she is well looked
after. Yet, in the PICU, parents often say that so much of that changes. What has your experience been like?
3 How would you compare the way you were able to look after your child in the PICU with how you are used to looking
after your child at home?
4 Can you describe for me what you were able to do or to say that was important to you in caring for your child in the
PICU? What were you unable to do or say that you would have wanted to?
5 Many parents describe that the way their child looks and behaves in the PICU is quite different from how they normally
look and behave and that this is quite stressful. Was this similar to your experience? How did this affect, if at all, the
way you cared for your child?
6 Can you describe things that the health care team did that really helped or made it difcult for you to care for your
child in the way you wanted to?
7 Is there anything else that the health care team could have done to support you in taking care of your child in the PICU?
8 Is there anything else you would like to add?
perspective. Since nurses are in a primary position to facili-
tate parenting, an enhanced understanding of parental role
alteration from the parents perspectives would help direct
nursing interventions to support parenting in the PICU.
Literature review
A recent systematic review found the majority of studies
on parenting the critically ill child focused on identifying
parental stressors, needs and coping strategies (Shudy et
al., 2006). In particular, Miles and Carters (1982) Paren-
tal Stressor Scale: Paediatric Intensive Care, has been used
extensively to quantify the prevalence of parental stressors.
Whilst parental role alteration is repeatedly identied by
parents as their greatest stressor, the measure provides little
insight into the nature of that role alteration.
Other studies have used qualitative methodologies to
explore families and parents PICU experiences. Roden
(2005) found that parents understood their role to be what
they would normally do at home; that is, mothers do the
mothering and nurses do the nursing. Findings emphasised
the importance of nurses and parents clarifying their role
expectations at the beginning of their relationship to faci-
litate communication and overall care of the family in the
PICU. However, studies eliciting the desired roles and expec-
tations of parents from their perspective remain scarce.
Snowdon and Gottlieb (1989) identied six types
of parental roles in the PICU: vigilant parent,
nurturercomforter, medical parent, caregiver, enter-
tainer and protector. This study contained an observational
component that facilitated the identication of situational
factors that may have contributed to altering the parenting
role, including procedures at the bedside and the presence
of family and friends.
Facilitators and barriers to parenting in the PICU have
also been identied. Noyes (1999) found the parental role
was inuenced by factors external to the parentchild sub-
system, such as events preceding the PICU admission and
the parents family support network. Mu et al. (1997) found
parents perceptions of disempowerment and loss of the
parental role led them to expand their familys boundary
and build shared patterns of caregiving interactions with the
PICU nurses. Tomlinson et al. (1999) reported that parents
responses to surrendering their primary caregiving role in
the PICU were not only affected by how nurses supplemen-
ted their role, but by how effectively nurses aided them in
retaining their role as a parent.
Whilst these studies highlight the importance of inter-
vening to help parents establish their role in the PICU,
our understanding of parents expectations and perceptions
remains limited. This knowledge would allow clinicians to
work with parents more effectively and support their essen-
tial contributions to their childs care.
The purpose of this study was to gain an in-depth unders-
tanding of parents perception of the parental role when
they have a critically ill child in the PICU. The research ques-
tions were: (1) what are parents perceptions of their role
in the PICU? (2) How do parents perceive their role to have
been altered in the PICU? (3) What can nurses do to facilitate
parenting in the PICU?
Methods
Design
A qualitative interpretive design was used to capture the
contextual and unique nature of each parents experience,
whilst elucidating the shared realities of similar health-
illness experiences within the PICU (Sandelowski, 2000;
Thorne et al., 1997).
Sample
Children are admitted to the PICU with a wide range of
medical diagnoses, ranging in age from infancy to 17 years;
therefore, purposive sampling was used to ensure partici-
pants would reect this heterogeneous group. Parents were
included who spoke English, and whose child was being pre-
pared for PICU discharge. Parents of children admitted for
suspected abuse were excluded.
Parents perception of the parental role in the PICU 145
Table 2 Demographic information.
Parent Child diagnosis Child age PICU length
of stay
Previous PICU
admission
Planned/emergency
admission
Siblings
Dad 38 years,
married
Motor vehicle
accident with
head injuries (left
frontal lobe
contusion,
occipital fracture,
brain oedema)
4 years 11 days No Emergency 3 brothers (15,
11, 8 years)
Mom 26 years,
married
Post Glenn
procedure for
hypoplastic left
heart syndrome
6 months 3 days Yes Planned 2 brothers (18
months and 3
years)
Mom 34 years,
married
Coarctation of the
aorta
13 days 8 days No Emergency 1 brother (2
years)
Mom, married Post-operative
tongue reduction
and opioid
withdrawal
6 months 7 days Yes Planned 2 siblings (9
and 4 years)
Dad 53 years,
divorced and
remarried
Septic shock 13 years 5 days Yes Emergency 1 brother 16
years)
Mom, married Respiratory
distress
3 months 6 days Yes Emergency 1 brother (3
1/2 years)
Mom 40 years,
divorced
Pneumonia and
collapsed lung
post-surgical
extubation
16 years 9 days Yes Emergency 1 sister (12
years)
Data collection
Ethical approval for the study was obtained from the
hospitals Research Ethics Board, and written informed
consent was obtained from each parent prior to commencing
data collection. Data were collected using in-depth semi-
structured interviews. Interview questions (Table 1) were
developed to ensure that various dimensions of the paren-
ting experience were explored, whilst allowing parents to
freely describe their own unique experiences (Morse and
Field, 1995). Follow up questions and probes were used to
further explore salient and relevant issues raised by parents
(Rubin and Rubin, 2005). Interviews lasted between 25 and
60 minutes and were audio recorded. Field notes were recor-
ded upon completion of each interview.
Data analysis
Data were analysed using the constant comparison method
described by Burnard (1991). Audiotapes were transcribed
verbatim and all textual data (transcripts and eld notes)
were read in their entirety. Line-by-line coding of the raw
data was completed and comments or statements describing
the parental role and facilitators of that role were identi-
ed. Using open and axial coding, all text deemed relevant
to the research questions was highlighted and given a pro-
visional label, remaining as close to the original data as
possible. Codes for all of the textual data were combined
and clustered into themes by the research team (Corbin,
1986).
Evaluation of rigour
To increase credibility, eld notes and transcripts were com-
pared and combined to create an accurate representation
of the parents experiences. Investigator triangulation was
used to reduce the likelihood of biased interpretation of
the data (Polit and Beck, 2004). Conrmation of preliminary
interpretations from early interviews was sought through
member-checking with parents of later interviews. An audit
trail of interview transcripts, eld notes, data reduction and
investigator documentation was systematically collected to
ensure dependability (Polit and Beck, 2004).
Results
Parents of seven children hospitalised in the PICU of a ter-
tiary care, Canadian university afliated paediatric hospital
were recruited. This sample size allowed for a rich and holis-
tic understanding of the parental experience, and facilitated
a meaningful case-oriented analysis (Sandelowski, 1995).
Parents ranged in age from 26 to 53 years, and children
from 13 days to 16 years. Children had a variety of medical
diagnoses (see Table 2).
Parent interviews revealed experiences lled with a
range of emotions from fear, guilt and helplessness to relief,
146 K.E. Ames et al.
hope and cautious optimism. Parents consistently stated
that their greatest concern was the survival of their child,
and that their role as a parent was to ensure their child
was well cared for. Whilst each parent prefaced his or her
interview with a similar assertion that their role was limited
in the PICU, their narratives revealed that they perceived
three important dimensions of the parenting role: (1) being
present and participating in the childs care; (2) forming a
partnership of trust with the PICU health care team; and (3)
being informed of the childs progress and treatment plan as
the person who knows the child best. Ways in which the
parental role can be facilitated by the PICU staff are also
identied within each dimension.
(1) Being present and participating in the childs
care in the PICU
Parents actively sought ways to interact and be present with
their child who was often heavily sedated, and connected
to various tubes and monitors in the foreign environment of
the PICU. In particular, knowing they were doing something
important for their child was a recurrent theme. Parents
described three principal ways in which they participated in
their childs care: (a) just being there and providing com-
fort, (b) active caring and (c) providing explanations and
reassurance to their child.
(a) Just being there and providing comfort.
In the words of one mother, Being a parent is just
being there and talking with him. When asked to des-
cribe what they were able to do with their child in the
PICU, the rst thing all parents said was just being
there. As expressions of comfort, this meant sitting
with their child, watching over him/her, praying for
him/her, touching his/her hand, talking to him/her, and
telling him/her mommy (or daddy) loves you, even
if the child was sedated. One mother poignantly stated
the importance of being there: Hes my boy, and I am
the mother. I know he sees that I will be there for him
. . . Hes sleeping but I know he sees I am beside him
and I take care of him, and that is the most important
thing. Although being present with their child was very
important to parents, many underscored the helpless-
ness they felt to do much more than that. In particular,
parents mourned not being able to hold their child
either because the child was intubated or because of
other contraindications. One mother lamented, That
was probably the hardest, not being able to hold her.
Especially when she . . . when you could see that she was
uncomfortable. You know? She was looking at you like,
Why arent you picking me up? Whats going on here?
This resulted in what one father described as a sense of
powerlessness.
(b) Active caring.
Many parents described being able to actively care
for their child, although for some this was not possible
until their childs medical condition stabilised. Parents
of younger children expressed satisfaction in bathing
their child and changing diapers. One mother explained,
Ive participated in her care . . . You know, obviously I
cant administer drugs or anything like that, but if I want
to [I can] feed her, hold her or calm her down. A parent
of an older child who helped staff weigh his son stated:
I would help with the tubes, and roll and help lift him.
I actually felt like I was helping out with something. And
I think my son knew I was there too. So I felt very, I felt
good about that.
Parents sometimes found it difcult to interact with
their child due to fear of interfering with monitoring
equipment and access lines. They were unsure of when
and how to touch their child. One mother explained:
I would have liked to pick himup . . . I had to ask at the
beginning, Can I touch him? Can I hold his hand? Can
I do it? And they said yes. Maybe telling me before
you can do this, like, because youre so scared of
doing something wrong.
(c) Providing explanations and reassurance to their child.
Parents also had a role in explaining things to their
children and reassuring them. One parent described hel-
ping his son struggle through existential questions and
the expectation of a long recovery using words such as,
You will get through this and Its nobodys fault,
not yours. The doctors did the best they could, you
were sicker than they thought, or you thought you were
. . . but now youre on your way. This father also sta-
ted that parents have a role in helping their children
express their emotions: [Its important for] one of us,
like parents, me being there or his mom being there
. . . so he can actually let go a little bit, and cry a lit-
tle bit. Parents with younger children often reassured
their child through their presence at the bedside.
(2) Forming a partnership of trust with the PICU
team
In addition to participating in the childs care, part of the
parental role included forming partnerships based on trust
with the PICU team. Parents recognised their childs critical
illness necessitated the acute medical and clinical expertise
of the health care team. However, they also realised their
childs well-being was dependent upon their own contribu-
tion to care, including: (a) sharing their expertise as the
childs parent, (b) building trust with the teamand (c) taking
care of themselves.
(a) Sharing their expertise as a parent.
Parents emphasised that as the parent, they had
knowledge about their childs nature that the PICU staff
did not. Sharing this expertise was an important part of
their parental role. One mother explained:
[The physician] sometimes asked for my opinion,
because he knows its my child . . . I know what the
problem is with my child. . . . I know whats happening
with my child because I am with him [all the] time.
. . . I know the situation. I know when he is a little bit
down and when he is going to go very bad. I see the
little things . . . I am the mother!
Parents described an eagerness to share their childs
unique cues and indicators of pain and discomfort. One
parent explained, I know that she never cries, so if
Parents perception of the parental role in the PICU 147
shes crying that means that she is uncomfortable . . .
She usually only cries if she is hungry, tired or uncom-
fortable. Parents shared their childs likes and dislikes,
giving suggestions to nurses about what would make
their child more comfortable. Parents identied a num-
ber of ways in which their expertise was elicited by staff,
including: being asked what their child normally did at
home, being included in the assessment of their childs
physical condition, being encouraged to contribute to
their childs well-being through normal parental acti-
vities such as feeding, and lastly, in the words of one
parent, helping me to focus on the baby and not the
monitors.
(b) Building trust with the team.
In addition to sharing their expertise with the team,
part of parenting in the PICU included relinquishing
control as primary care provider and trusting the health
care team to take over. One mother poignantly descri-
bed this:
. . . its difcult as I usually control all of As care . . .
to relinquish some portion of that for medications
and for decisions that just by their medical training
Im not equipped to make. Just that, in your mind,
is difcult because youve given over control of your
child whom you usually look after to that person. But
the nursing staff has been very good about letting me
do the things that I am skilled to do.
Most parents described managing multiple parenting
demands whilst their child was in the PICU. These
included taking care of other children, attending to
household responsibilities or getting respite and nourish-
ment. When leaving the PICU, parents felt an important
part of their role was ensuring their child was safe. One
mother described how she would carefully observe the
staff taking care of her child: Like if its someone new,
you watch them . . . and then the next day, its still them.
So its good . . . they have seen her and taken care of her
more than once, so that helps. Parents also needed
to ensure the staff member caring for their child knew
about the childs nature and ways they preferred to be
comforted.
Trust was fostered through interactions with the
health care team. One mother described how a nurse
tried to emulate her way of comforting her child.
Oh, I denitely trust them . . . I saw [a nurse] yes-
terday trying to hold her the same way I would and,
you know, comforting her. I had left for coffee and
she had woken up and the [the nurse] told me to go
[again] and have a break, and I did.
(c) Taking care of themselves.
When parents felt cared for, such as being asked daily
how they were coping, they felt better able to parent
their child. In order to be present and interact with their
child, parents recognised they had to take time out for
respite and to manage other demands. One mom descri-
bed it as a balancing act in which taking care of herself
was always the last priority.
If he was home, then I would be the one if hes crying,
and I would be the one if hes hungry . . . and the
fact that I left him last night for the rst time, Im
scared of that bonding being altered . . . You know its
balancing the bonding with him, and its balancing
the security of my other child, you know? And its
taking care of me. That comes last . . . So we called
here, and they were good at explaining Hes calm,
hes ok, hes sleeping. You can call all night if you
want.
In addition to being able to call 24-hours a day,
parents described several ways they received care from
staff, including: being encouraged to get respite, having
someone present to answer questions, being provided
with explanations of procedures and interpretation of
results, and being reassured of the normalcy of their
childs behaviour and responses to treatment.
(3) Being informed of the childs progress and
treatment plan as the person who knows the
child best
An important dimension of the parental role was acquiring
information and gaining knowledge about the childs treat-
ment and recovery in the PICU. Parents described their role
as knowledge seekers, including: (a) knowing their childs
status, (b) understanding the care provided to their child
and (c) knowing what to expect next.
(a) Knowing their childs status.
Parents were adept at monitoring their childs condi-
tion in the PICU. They sought information about their
childs physiological status by continuously observing
their child, reading the cardiac monitors and asking
staff, Is that normal? and What does that mean?
Parents quickly learned what were considered good
values for their child. Knowing how to interpret the
monitors was important because it allowed parents to
independently evaluate how well their child was doing.
One father described reading the monitors whilst his
daughter was sedated to reassure himself that she was
still alive.
I think I tried to get only the essentials of being alive
. . . the heartbeat, the blood pressure, that kind of
thing. Not more than that . . . I didnt want to ask
every single detail. Just wanted to know, is she alive?
Parents also ascertained their childs status by sur-
veying the number of wires and tubes connected to their
child. One mother explained that the number of intra-
venous lines for medications upon her childs admission
was overwhelming but as she saw the number become
less, this was an indication of her childs recovery.
Parents also observed the number of staff members and
the intensity of their actions as indicative of their childs
status. One mother stated:
You just saw ve people around, working all the time,
and I think that was hard for us. We had trouble
staying there because we panicked the whole time
. . . The tubes were ok, its the reactions . . . because
it looked really serious by the amount of people that
were there . . .
148 K.E. Ames et al.
All parents emphasised that frequent feedback from
staff was critical in helping them understand their
childs condition and relieving their sense of helpless-
ness.
(b) Understanding the care provided to their child.
In addition to knowledge regarding their childs sta-
tus, it was important for parents to understand the care
that was being provided to their child. Parents descri-
bed how being educated about medical interventions
such as intubation, sedation, opioid use, intravenous
lines and chest tubes led to an understanding of their
childs appearance and behaviours. This, in turn, hel-
ped moderate parents emotional reactions and allowed
them to care for their child. One mother described the
importance of understanding her daughters morphine
withdrawal reaction following surgery: I didnt want
her to have to go through withdrawal, but I understood
why . . . Maybe if I [had not been] educated I would be
angry. Understanding her daughters reactions helped
this mother to remain present and comfort her daughter.
Parents sought knowledge about their childs care by
being assertive and asking questions, and being present
and actively listening. Prior experience with health care
providers gave some parents more condence to ask
questions; however, the amount of information parents
wanted varied, with some wanting only basics and others
wanting to knoweverything. It was evident that some
parents had learned the language and routines of the
PICU to gain the information they wanted. For example,
parents recalled the names of medications and routes of
administration, their side effects and the physiological
indicators of their effectiveness. Despite learning some
medical language, parents noted how important it was
for staff to explain the care in simple terms. One father
described how medical staff came down to his level
in the language they used to describe his childs care.
So we werent in the dark . . . they would hold their
little conferences . . . and theyd all talk shop. Theyd
talk about this and that, and we gave him potas-
sium, and other technical terms which I dont know,
but then theyd take the time, come down, [ita-
lics added] and the doctor would say, Well what
we were talking about was this, and they would
explain, This is whats happening now, this is what
were doing here. . . that was a calming thing.
Parents found this knowledge helped them feel less
helpless and provided some direction for participating in
their childs care. One parent said, With him, I cant
[do a lot] right now. I know I cant, and I dont know
if I would want to yet because of the arterial line and
everything, you know? Just touching and talking to him,
and feeding him for now is ok.
(c) Knowing what to expect next.
Acquiring knowledge about what to expect in the
PICU was an ongoing process for parents. Commonly,
parents reported having received anticipatory informa-
tion regarding their childs appearance and the PICU
environment, but emphasised that they had needed to
continue asking questions throughout their childs stay.
One parent commented, when your kid . . . comes here
. . . they tell you so much information sometimes . . . its
just a blur. And I think it is really important that there is
a person that will answer the questions . . . on an ongoing
basis.
Knowledge often had an empowering quality for
parents, especially the wisdom they gained from
prior PICU experiences. Three parents explicitly sta-
ted they experienced a difference in their reactions
and responses between their rst and subsequent expe-
riences, the rst being more of a shock and more
traumatic. Their familiarity with the PICU gave them
condence to seek information and participate in their
childs care. Parents with experience felt condent,
for example, making suggestions to nurses about what
would make their child more comfortable. However,
prior experience was not always helpful. One parent
described his childs second PICU admission as just as
traumatic as his rst. This parent struggled with memo-
ries of a previous intensive care unit experience with
another family member in which the outcome was not
favourable. In general, previous positive PICU expe-
riences helped parents feel better prepared for what
they would see and experience, which, in turn made
them feel less helpless.
Discussion
Results of this study provide insight into the parental role
from the perspectives of parents with a critically ill child in
the PICU. Commonly, parents felt this was a time when their
emotions, combined with the medical complexity of their
childs needs, were overwhelming. Yet all study participants
felt that parenting their critically ill child was of fundamen-
tal importance. This consisted of being present and actively
participating in their childs care, forming a trusting partner-
ship with the PICU team, and keeping abreast of their childs
progress and treatment plan as the one who knows the
child best.
Parental contributions to the care of their child in
the PICU
An important aspect of a collaborative partnership involves
not only the two-way sharing of expertise, but sharing the
physical care of the child as well. Power and Franck (2008)
dened parental participation as the physical, psycholo-
gical and social activities performed by parents to improve
the health and/or psychological well-being of the child . . .
Parents in this study rmly believed that actively participa-
ting in their childs care was crucial to their childs emotional
and physical well-being. Indeed, one study has identied
benets of parental participation in PICU care, including
reduced parent and child anxiety, decreased length of stay,
and decreased tension between parents and staff when role
expectations are unambiguous (Just, 2005); however, the
denition and benets of parental participation in the PICU
have not been well established.
Studies in the adult intensive care unit (ICU) literature
reveal that family members often wish to participate in the
care of family members, and perceive participation as posi-
tive, productive and supportive of their relationship with the
patient (Van Horn and Kautz, 2007). Findings of the current
Parents perception of the parental role in the PICU 149
study suggest that, despite the complexity of their childs
needs and their states of overwhelming stress, parents also
express an earnest desire to be involved in their childs care.
Parents felt that by being involved, they experienced a grea-
ter sense of purpose in their role.
Whilst parents wished to be involved in providing care,
they often felt unsure when and how to touch, hold or inter-
act with their child. They said it would be helpful to receive
this information from staff as early in the childs PICU stay as
possible. Parents found it helpful when staff provided oppor-
tunities for parents to engage in such activities as feeding,
holding, bathing, reading to and talking to their child.
Sharing their parental expertise
Parents suggested that when PICU staff valued their input
and insight or took their suggestions into consideration, they
felt more efcacious as a parent. Parents relied on the medi-
cal expertise of the PICU team, but perceived that as a
parent, they had expertise about their child that the staff
could not have insight that they believed could improve
their childs care. For example, one mother talked about her
unique ability as the childs mother to pick up on subtle cues
from her son that indicated his level of physical distress or
comfort. Another mother spoke about knowing her daugh-
ters nature, something that she did not feel the staff
would know without her input. Parents described their role
in terms of being sensitive and responsive to their childs
unique cues and sharing this information with the health
care team. In so doing, parents worked in tandem with the
health care team and felt they were protecting their child
and ensuring he/she received the best care possible.
Study ndings suggest it is important that parents form a
partnership with the PICU staff in caring for the sick child.
In the general nursing literature, a collaborative partnership
has been dened as an interpersonal relationship between
two or more people who work together towards a mutually
dened purpose (Gallant et al., 2002, p. 151). In the PICU,
that mutual purpose can be understood as providing the best
care possible for the child from a holistic perspective.
Parents described several ways in which the PICU team
could facilitate this aspect of the parental role, inclu-
ding eliciting parents opinions in the teams daily physical
assessments of the child, and valuing parents insight about
their childs nature and personality. In the adult ICU lite-
rature, Williams (2005) looked at the contribution families
make to the care of their loved one in the ICU from the
nurses perspectives. Nurses noted that families provided
invaluable information about the patient as a person and
this, in turn, helped them respond more appropriately to
the patients needs. In addition, this process of sharing was
considered vital to both the nursefamily relationship and
nursepatient relationship in that it engendered trust in the
nursing care provided. It was hypothesised that this, in turn,
was related to improved outcomes for the patient and the
family.
Obtaining information about their child
PICU research conducted to-date has emphasised the impor-
tance of maximising the provision of information to parents
to reduce their stress, anxiety and sense of helplessness
(Shudy et al., 2006). Certainly the importance of providing
tailored information to parents on an ongoing basis cannot
be overemphasised. Parents in this study wanted to know
about their childs physiological status and test results, what
treatments were being provided, and the reasons for those
treatments. They also wanted anticipatory guidance on what
to expect regarding their childs recovery, and to understand
goals the team had established for their child that would
indicate recovery was taking place.
However, our ndings emphasise that information alone
is not sufcient to support parents in the PICU. One inter-
vention study that was successful in reducing parental stress
(Curley and Wallace, 1992), focused on enhancing the dyna-
mic and reciprocal interaction between parents and nurses
in the PICU. As one mother from our study emphasised, it is
this personal contact and interaction with PICU staff that is
imperative in supporting the parental role.
Limitations and further research
The parents role in the PICU is inuenced by dynamic rela-
tionships and interactions with the child and with members
of the health care team. This study did not include an obser-
vational component, which may have yielded a richer and
more complete contextual understanding of the parental
role in the PICU. In addition, the scarcity of information on
the parental role in the PICUdirected the research to include
a heterogeneous sample of parents. Although not a focus
of the current study, results do suggest prior PICU expe-
rience generally helps inform parents of their role during
subsequent PICU admissions; however, one father described
his previous experience as unhelpful and felt it contribu-
ted to anxiety. Further studies with larger sample sizes
that seek to include PICU sub-populations are necessary
to determine how the parental role is impacted, and how
participation varies between parents whose child is admit-
ted for the rst time and those who have had previous
experiences. Similarly, perceptions of parents whose childs
admission was planned versus those whose admission was
unplanned may differ in terms of role expectations; or, per-
haps there is a trajectory along which role expectations
develop and unfold, based on the length of time the child
is in the PICU, and the parents experience and comfort
level. Other variables that may impact the parental role
include parents marital status, the childs diagnosis and
age. Grounded theory methodology may be useful in elici-
ting this information. Finally, future research might focus on
the effect of parental participation on the care of the child.
Conclusions
Building on previous research that consistently identies
parental role alteration as parents greatest stressor during
a childs PICU hospitalisation, this study provides new insight
into parents perceptions of how their role may be alte-
red, and the resultant implications for clinical practice.
Three dimensions of the parental role in the PICU were
identied, including being present and participating in their
childs care, building a trusting partnership with the health
care team so they can share their parental expertise, and
150 K.E. Ames et al.
being informed of their childs progress and treatment plan
to enhance the reciprocal relationship between parents
and staff. Parents identied corresponding facilitators of
parenting, such as guidance to participate in their childs
care, inclusion of parents expertise by staff in their assess-
ments of the child, and provision of tailored information.
Understanding parents perceptions of their role can pro-
vide invaluable insight into their experiences, ultimately
directing staff to facilitate parenting in the PICU.
Funding
K.E. Ames was funded for this study by Groupe de Recherche
Interuniversitaire en Interventions en Sciences Inrmires
du Qubec (GRIISIQ) and the Canadian Nurses Foundation
(CNF), Nursing Care Partnership Program.
J.E. Rennick is an FRSQ Clinical Research Scholar,
and holds a New Investigator Award from Sick Kids
Foundation/IHDCYH-CIHR National Grants Program. Dr. Ren-
nick is a member of the McGill University Health Centre
Research Institute, which is funded by the FRSQ.
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