Intensive and Critical Care Nursing (2011) 27, 143—150

available at www.sciencedirect.com

journal homepage: www.elsevier.com/iccn

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 Children’s 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 Summary
Objectives: The purpose of this study was to explore parents’ perception of the parental role
Parent experience;
in a tertiary care Canadian university affiliated hospital’s paediatric intensive care unit (PICU).
Parents’ perception;
Research methodology: A descriptive interpretive design was used with a purposive hetero-
Paediatric intensive
geneous sample to reflect the range of children and parents normally admitted to the PICU.
care unit;
Semi-structured interviews were conducted with seven parents. Interview data were collected
PICU;
and analysed using the constant comparative method.
Intensive care;
Findings: Three main themes emerged: (1) being present and participating in the child’s care;
Parental role
(2) forming a partnership of trust with the PICU health care team; and (3) being informed of
the child’s 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 sionals (Gillis and Rennick, 2006). Communication is more

difficult as children are often sedated and intubated, and
Admission of a child to the paediatric intensive care unit their appearance, emotions and behaviours are often chan-
(PICU) is an agonising experience for a parent. Fearful for ged. Parents may feel immobilised and experience a sense
their child’s survival, and in a foreign and highly techni- of helplessness in not knowing how to care for their child
cal environment, parents must surrender their responsibility (Shudy et al., 2006).
as protector and primary caregiver to healthcare profes- Since the 1980s, parents have consistently identified 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
∗ Corresponding author. Tel.: +1 416-813-6486. have used qualitative methodologies to better understand
E-mail address: [email protected] (K.E. Ames). the nature of parental role alteration from the parent’s

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 child’s 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 difficult 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- parental role led them to expand their family’s boundary
tate parenting, an enhanced understanding of parental role and build shared patterns of caregiving interactions with the
alteration from the parent’s perspectives would help direct PICU nurses. Tomlinson et al. (1999) reported that parents’
nursing interventions to support parenting in the PICU. 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
Literature review retaining their role as a parent.
Whilst these studies highlight the importance of inter-
A recent systematic review found the majority of studies vening to help parents establish their role in the PICU,
on parenting the critically ill child focused on identifying our understanding of parents’ expectations and perceptions
parental stressors, needs and coping strategies (Shudy et remains limited. This knowledge would allow clinicians to
al., 2006). In particular, Miles and Carter’s (1982) Paren- work with parents more effectively and support their essen-
tal Stressor Scale: Paediatric Intensive Care, has been used tial contributions to their child’s care.
extensively to quantify the prevalence of parental stressors. The purpose of this study was to gain an in-depth unders-
Whilst parental role alteration is repeatedly identified by tanding of parents’ perception of the parental role when
parents as their greatest stressor, the measure provides little they have a critically ill child in the PICU. The research ques-
insight into the nature of that role alteration. tions were: (1) what are parents’ perceptions of their role
Other studies have used qualitative methodologies to in the PICU? (2) How do parents perceive their role to have
explore families’ and parents’ PICU experiences. Roden been altered in the PICU? (3) What can nurses do to facilitate
(2005) found that parents understood their role to be what parenting in the PICU?
they would normally do at home; that is, ‘‘mothers do the
mothering and nurses do the nursing.’’ Findings emphasised Methods
the importance of nurses and parents clarifying their role
expectations at the beginning of their relationship to faci- Design
litate communication and overall care of the family in the
PICU. However, studies eliciting the desired roles and expec-
A qualitative interpretive design was used to capture the
tations of parents from their perspective remain scarce.
contextual and unique nature of each parent’s experience,
Snowdon and Gottlieb (1989) identified six types
whilst elucidating the shared realities of similar health-
of parental roles in the PICU: vigilant parent,
illness experiences within the PICU (Sandelowski, 2000;
nurturer—comforter, medical parent, caregiver, enter-
Thorne et al., 1997).
tainer and protector. This study contained an observational
component that facilitated the identification of situational
factors that may have contributed to altering the parenting Sample
role, including procedures at the bedside and the presence
of family and friends. Children are admitted to the PICU with a wide range of
Facilitators and barriers to parenting in the PICU have medical diagnoses, ranging in age from infancy to 17 years;
also been identified. Noyes’ (1999) found the parental role therefore, purposive sampling was used to ensure partici-
was influenced by factors external to the parent—child sub- pants would reflect this heterogeneous group. Parents were
system, such as events preceding the PICU admission and included who spoke English, and whose child was being pre-
the parents’ family support network. Mu et al. (1997) found pared for PICU discharge. Parents of children admitted for
parents’ perceptions of disempowerment and loss of the 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 Previous PICU Planned/emergency Siblings
of stay admission admission

Dad 38 years, Motor vehicle 4 years 11 days No Emergency 3 brothers (15,

married accident with 11, 8 years)
head injuries (left
frontal lobe
contusion,
occipital fracture,
brain oedema)
Mom 26 years, Post Glenn 6 months 3 days Yes Planned 2 brothers (18
married procedure for months and 3
hypoplastic left years)
heart syndrome
Mom 34 years, Coarctation of the 13 days 8 days No Emergency 1 brother (2
married aorta years)
Mom, married Post-operative 6 months 7 days Yes Planned 2 siblings (9
tongue reduction and 4 years)
and opioid
withdrawal
Dad 53 years, Septic shock 13 years 5 days Yes Emergency 1 brother 16
divorced and years)
remarried
Mom, married Respiratory 3 months 6 days Yes Emergency 1 brother (3
distress 1/2 years)
Mom 40 years, Pneumonia and 16 years 9 days Yes Emergency 1 sister (12
divorced collapsed lung years)
post-surgical
extubation

Data collection and clustered into themes by the research team (Corbin,
1986).
Ethical approval for the study was obtained from the
hospital’s Research Ethics Board, and written informed Evaluation of rigour
consent was obtained from each parent prior to commencing
data collection. Data were collected using in-depth semi- To increase credibility, field notes and transcripts were com-
structured interviews. Interview questions (Table 1) were pared and combined to create an accurate representation
developed to ensure that various dimensions of the paren- of the parents’ experiences. Investigator triangulation was
ting experience were explored, whilst allowing parents to used to reduce the likelihood of biased interpretation of
freely describe their own unique experiences (Morse and the data (Polit and Beck, 2004). Confirmation of preliminary
Field, 1995). Follow up questions and probes were used to interpretations from early interviews was sought through
further explore salient and relevant issues raised by parents member-checking with parents of later interviews. An audit
(Rubin and Rubin, 2005). Interviews lasted between 25 and trail of interview transcripts, field notes, data reduction and
60 minutes and were audio recorded. Field notes were recor- investigator documentation was systematically collected to
ded upon completion of each interview. ensure dependability (Polit and Beck, 2004).

Data analysis Results

Data were analysed using the constant comparison method Parents of seven children hospitalised in the PICU of a ter-
described by Burnard (1991). Audiotapes were transcribed tiary care, Canadian university affiliated paediatric hospital
verbatim and all textual data (transcripts and field notes) were recruited. This sample size allowed for a rich and holis-
were read in their entirety. Line-by-line coding of the raw tic understanding of the parental experience, and facilitated
data was completed and comments or statements describing a meaningful case-oriented analysis (Sandelowski, 1995).
the parental role and facilitators of that role were identi- Parents ranged in age from 26 to 53 years, and children
fied. Using open and axial coding, all text deemed relevant from 13 days to 16 years. Children had a variety of medical
to the research questions was highlighted and given a pro- diagnoses (see Table 2).
visional label, remaining as close to the original data as Parent interviews revealed experiences filled with a
possible. Codes for all of the textual data were combined range of emotions from fear, guilt and helplessness to relief,
146 K.E. Ames et al.

hope and cautious optimism. Parents consistently stated to [I can] feed her, hold her or calm her down.’’ A parent
that their greatest concern was the survival of their child, of an older child who helped staff weigh his son stated:
and that their role as a parent was to ensure their child ‘‘I would help with the tubes, and roll and help lift him.
was well cared for. Whilst each parent prefaced his or her I actually felt like I was helping out with something. And
interview with a similar assertion that their role was limited I think my son knew I was there too. So I felt very, I felt
in the PICU, their narratives revealed that they perceived good about that.’’
three important dimensions of the parenting role: (1) being Parents sometimes found it difficult to interact with
present and participating in the child’s care; (2) forming a their child due to fear of interfering with monitoring
partnership of trust with the PICU health care team; and (3) equipment and access lines. They were unsure of when
being informed of the child’s progress and treatment plan as and how to touch their child. One mother explained:
the person who ‘‘knows’’ the child best. Ways in which the
I would have liked to pick him up . . . I had to ask at the
parental role can be facilitated by the PICU staff are also
beginning, ‘Can I touch him? Can I hold his hand? Can
identified within each dimension.
I do it?’ And they said ‘yes’. Maybe telling me before
— you can do this, like, because you’re so scared of
(1) Being present and participating in the child’s doing something wrong.
care in the PICU
(c) Providing explanations and reassurance to their child.
Parents also had a role in explaining things to their
Parents actively sought ways to interact and be present with children and reassuring them. One parent described hel-
their child who was often heavily sedated, and connected ping his son struggle through existential questions and
to various tubes and monitors in the foreign environment of the expectation of a long recovery using words such as,
the PICU. In particular, knowing they were doing something ‘‘You will get through this’’ and ‘‘It’s nobody’s fault,
important for their child was a recurrent theme. Parents not yours. The doctors did the best they could, you
described three principal ways in which they participated in were sicker than they thought, or you thought you were
their child’s care: (a) just being there and providing com- . . . but now you’re on your way.’’ This father also sta-
fort, (b) active caring and (c) providing explanations and ted that parents have a role in helping their children
reassurance to their child. express their emotions: ‘‘[It’s important for] one of us,
like parents, me being there or his mom being there
(a) Just being there and providing comfort. . . . so he can actually let go a little bit, and cry a lit-
In the words of one mother, ‘‘Being a parent is just tle bit.’’ Parents with younger children often reassured
being there and talking with him.’’ When asked to des- their child through their presence at the bedside.
cribe what they were able to do with their child in the
PICU, the first thing all parents said was ‘‘just being
there.’’ As expressions of comfort, this meant sitting
(2) Forming a partnership of trust with the PICU
with their child, watching over him/her, praying for team
him/her, touching his/her hand, talking to him/her, and
telling him/her ‘‘mommy (or daddy) loves you,’’ even In addition to participating in the child’s care, part of the
if the child was sedated. One mother poignantly stated parental role included forming partnerships based on trust
the importance of being there: ‘‘He’s my boy, and I am with the PICU team. Parents recognised their child’s critical
the mother. I know he sees that I will be there for him illness necessitated the acute medical and clinical expertise
. . . He’s sleeping but I know he sees I am beside him of the health care team. However, they also realised their
and I take care of him, and that is the most important child’s well-being was dependent upon their own contribu-
thing.’’ Although being present with their child was very tion to care, including: (a) sharing their expertise as the
important to parents, many underscored the helpless- child’s parent, (b) building trust with the team and (c) taking
ness they felt to do much more than that. In particular, care of themselves.
parents mourned not being able to hold their child —
either because the child was intubated or because of (a) Sharing their expertise as a parent.
other contraindications. One mother lamented, ‘‘That Parents emphasised that as the parent, they had
was probably the hardest, not being able to hold her. knowledge about their child’s nature that the PICU staff
Especially when she . . . when you could see that she was did not. Sharing this expertise was an important part of
uncomfortable. You know? She was looking at you like, their parental role. One mother explained:
‘Why aren’t you picking me up? What’s going on here?’’’
[The physician] sometimes asked for my opinion,
This resulted in what one father described as a sense of
because he knows it’s my child . . . I know what the
powerlessness.
problem is with my child. . . . I know what’s happening
(b) Active caring.
with my child because I am with him [all the] time.
Many parents described being able to actively care
. . . I know the situation. I know when he is a little bit
for their child, although for some this was not possible
down and when he is going to go very bad. I see the
until their child’s medical condition stabilised. Parents
little things . . . I am the mother!
of younger children expressed satisfaction in bathing
their child and changing diapers. One mother explained, Parents described an eagerness to share their child’s
‘‘I’ve participated in her care . . . You know, obviously I unique cues and indicators of pain and discomfort. One
can’t administer drugs or anything like that, but if I want parent explained, ‘‘I know that she never cries, so if
Parents’ perception of the parental role in the PICU 147

she’s crying that means that she is uncomfortable . . . fact that I left him last night for the first time, I’m
She usually only cries if she is hungry, tired or uncom- scared of that bonding being altered . . . You know it’s
fortable.’’ Parents shared their child’s likes and dislikes, balancing the bonding with him, and it’s balancing
giving suggestions to nurses about what would make the security of my other child, you know? And it’s
their child more comfortable. Parents identified a num- taking care of me. That comes last . . . So we called
ber of ways in which their expertise was elicited by staff, here, and they were good at explaining ‘‘He’s calm,
including: being asked what their child normally did at he’s ok, he’s sleeping. You can call all night if you
home, being included in the assessment of their child’s want.’’
physical condition, being encouraged to contribute to
In addition to being able to call 24-hours a day,
their child’s well-being through normal parental acti-
parents described several ways they received care from
vities such as feeding, and lastly, in the words of one
staff, including: being encouraged to get respite, having
parent, ‘‘helping me to focus on the baby and not the
someone present to answer questions, being provided
monitors.’
with explanations of procedures and interpretation of
(b) Building trust with the team.
results, and being reassured of the normalcy of their
In addition to sharing their expertise with the team,
child’s behaviour and responses to treatment.
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- (3) Being informed of the child’s progress and
bed this: treatment plan as the person who ‘‘knows’’ the
child best
. . . it’s difficult as I usually control all of A’s care . . .
to relinquish some portion of that for medications
and for decisions that just by their medical training An important dimension of the parental role was acquiring
I’m not equipped to make. Just that, in your mind, information and gaining knowledge about the child’s treat-
is difficult because you’ve given over control of your ment and recovery in the PICU. Parents described their role
child whom you usually look after to that person. But as knowledge seekers, including: (a) knowing their child’s
the nursing staff has been very good about letting me status, (b) understanding the care provided to their child
do the things that I am skilled to do. and (c) knowing what to expect next.

Most parents described managing multiple parenting (a) Knowing their child’s status.
demands whilst their child was in the PICU. These Parents were adept at monitoring their child’s condi-
included taking care of other children, attending to tion in the PICU. They sought information about their
household responsibilities or getting respite and nourish- child’s physiological status by continuously observing
ment. When leaving the PICU, parents felt an important their child, reading the cardiac monitors and asking
part of their role was ensuring their child was safe. One staff, ‘‘Is that normal?’’ and ‘‘What does that mean?’’
mother described how she would carefully observe the Parents quickly learned what were considered ‘‘good’’
staff taking care of her child: ‘‘Like if it’s someone new, values for their child. Knowing how to interpret the
you watch them . . . and then the next day, it’s still them. monitors was important because it allowed parents to
So it’s good . . . they have seen her and taken care of her independently evaluate how well their child was doing.
more than once, so that helps.’’ Parents also needed One father described reading the monitors whilst his
to ensure the staff member caring for their child knew daughter was sedated to reassure himself that she was
about the child’s nature and ways they preferred to be still alive.
comforted.
Trust was fostered through interactions with the I think I tried to get only the essentials of being alive
health care team. One mother described how a nurse . . . the heartbeat, the blood pressure, that kind of
tried to emulate her way of comforting her child. thing. Not more than that . . . I didn’t want to ask
every single detail. Just wanted to know, is she alive?
Oh, I definitely trust them . . . I saw [a nurse] yes-
terday trying to hold her the same way I would and, Parents also ascertained their child’s status by sur-
you know, comforting her. I had left for coffee and veying the number of wires and tubes connected to their
she had woken up and the [the nurse] told me to go child. One mother explained that the number of intra-
[again] and have a break, and I did. venous lines for medications upon her child’s admission
was overwhelming but as she saw the number become
(c) Taking care of themselves. less, this was an indication of her child’s recovery.
When parents felt cared for, such as being asked daily Parents also observed the number of staff members and
how they were coping, they felt better able to parent the intensity of their actions as indicative of their child’s
their child. In order to be present and interact with their status. One mother stated:
child, parents recognised they had to take time out for
respite and to manage other demands. One mom descri- You just saw five people around, working all the time,
bed it as a balancing act in which taking care of herself and I think that was hard for us. We had trouble
was always the last priority. staying there because we panicked the whole time
. . . The tubes were ok, it’s the reactions . . . because
If he was home, then I would be the one if he’s crying, it looked really serious by the amount of people that
and I would be the one if he’s hungry . . . and the were there . . .
148 K.E. Ames et al.

All parents emphasised that frequent feedback from just a blur. And I think it is really important that there is
staff was critical in helping them understand their a person that will answer the questions . . . on an ongoing
child’s condition and relieving their sense of helpless- basis.’’
ness. Knowledge often had an empowering quality for
(b) Understanding the care provided to their child. parents, especially the wisdom they gained from
In addition to knowledge regarding their child’s sta- prior PICU experiences. Three parents explicitly sta-
tus, it was important for parents to understand the care ted they experienced a difference in their reactions
that was being provided to their child. Parents descri- and responses between their first and subsequent expe-
bed how being educated about medical interventions riences, the first being more of a ‘‘shock’’ and more
such as intubation, sedation, opioid use, intravenous ‘‘traumatic.’’ Their familiarity with the PICU gave them
lines and chest tubes led to an understanding of their confidence to seek information and participate in their
child’s appearance and behaviours. This, in turn, hel- child’s care. Parents with experience felt confident,
ped moderate parents’ emotional reactions and allowed for example, making suggestions to nurses about what
them to care for their child. One mother described the would make their child more comfortable. However,
importance of understanding her daughter’s morphine prior experience was not always helpful. One parent
withdrawal reaction following surgery: ‘‘I didn’t want described his child’s second PICU admission as just as
her to have to go through withdrawal, but I understood traumatic as his first. This parent struggled with memo-
why . . . Maybe if I [had not been] educated I would be ries of a previous intensive care unit experience with
angry.’’ Understanding her daughter’s reactions helped another family member in which the outcome was not
this mother to remain present and comfort her daughter. favourable. In general, previous positive PICU expe-
Parents sought knowledge about their child’s care by riences helped parents feel better prepared for what
being assertive and asking questions, and being present they would see and experience, which, in turn made
and actively listening. Prior experience with health care them feel less helpless.
providers gave some parents more confidence to ask
questions; however, the amount of information parents Discussion
wanted varied, with some wanting only basics and others
wanting to know ‘‘everything’’. It was evident that some
Results of this study provide insight into the parental role
parents had learned the language and routines of the
from the perspectives of parents with a critically ill child in
PICU to gain the information they wanted. For example,
the PICU. Commonly, parents felt this was a time when their
parents recalled the names of medications and routes of
emotions, combined with the medical complexity of their
administration, their side effects and the physiological
child’s needs, were overwhelming. Yet all study participants
indicators of their effectiveness. Despite learning some
felt that parenting their critically ill child was of fundamen-
medical language, parents noted how important it was
tal importance. This consisted of being present and actively
for staff to explain the care in simple terms. One father
participating in their child’s care, forming a trusting partner-
described how medical staff ‘‘came down’’ to his level
ship with the PICU team, and keeping abreast of their child’s
in the language they used to describe his child’s care.
progress and treatment plan as the one who ‘‘knows’’ the
So we weren’t in the dark . . . they would hold their child best.
little conferences . . . and they’d all talk shop. They’d
talk about this and that, and we gave him potas- Parental contributions to the care of their child in
sium, and other technical terms which I don’t know,
the PICU
but then they’d take the time, come down, [ita-
lics added] and the doctor would say, ‘‘Well what
An important aspect of a collaborative partnership involves
we were talking about was this,’’ and they would
not only the two-way sharing of expertise, but sharing the
explain, ‘‘This is what’s happening now, this is what
physical care of the child as well. Power and Franck (2008)
we’re doing here’’. . . that was a calming thing.
defined parental participation as the ‘‘physical, psycholo-
Parents found this knowledge helped them feel less gical and social activities performed by parents to improve
helpless and provided some direction for participating in the health and/or psychological well-being of the child . . .’’
their child’s care. One parent said, ‘‘With him, I can’t Parents in this study firmly believed that actively participa-
[do a lot] right now. I know I can’t, and I don’t know ting in their child’s care was crucial to their child’s emotional
if I would want to yet because of the arterial line and and physical well-being. Indeed, one study has identified
everything, you know? Just touching and talking to him, benefits of parental participation in PICU care, including
and feeding him for now is ok.’’ reduced parent and child anxiety, decreased length of stay,
(c) Knowing what to expect next. and decreased tension between parents and staff when role
Acquiring knowledge about what to expect in the expectations are unambiguous (Just, 2005); however, the
PICU was an ongoing process for parents. Commonly, definition and benefits of parental participation in the PICU
parents reported having received anticipatory informa- have not been well established.
tion regarding their child’s appearance and the PICU Studies in the adult intensive care unit (ICU) literature
environment, but emphasised that they had needed to reveal that family members often wish to participate in the
continue asking questions throughout their child’s stay. care of family members, and perceive participation as posi-
One parent commented, ‘‘when your kid . . . comes here tive, productive and supportive of their relationship with the
. . . they tell you so much information sometimes . . . it’s 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 child’s to reduce their stress, anxiety and sense of helplessness
needs and their states of overwhelming stress, parents also (Shudy et al., 2006). Certainly the importance of providing
express an earnest desire to be involved in their child’s care. tailored information to parents on an ongoing basis cannot
Parents felt that by being involved, they experienced a grea- be overemphasised. Parents in this study wanted to know
ter sense of purpose in their role. about their child’s physiological status and test results, what
Whilst parents wished to be involved in providing care, treatments were being provided, and the reasons for those
they often felt unsure when and how to touch, hold or inter- treatments. They also wanted anticipatory guidance on what
act with their child. They said it would be helpful to receive to expect regarding their child’s recovery, and to understand
this information from staff as early in the child’s PICU stay as goals the team had established for their child that would
possible. Parents found it helpful when staff provided oppor- indicate recovery was taking place.
tunities for parents to engage in such activities as feeding, However, our findings emphasise that information alone
holding, bathing, reading to and talking to their child. is not sufficient 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-
Sharing their parental expertise
mic and reciprocal interaction between parents and nurses
in the PICU. As one mother from our study emphasised, it is
Parents suggested that when PICU staff valued their input
this personal contact and interaction with PICU staff that is
and insight or took their suggestions into consideration, they
imperative in supporting the parental role.
felt more efficacious 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 Limitations and further research
could not have — insight that they believed could improve
their child’s care. For example, one mother talked about her The parent’s role in the PICU is influenced by dynamic rela-
unique ability as the child’s mother to pick up on subtle cues tionships and interactions with the child and with members
from her son that indicated his level of physical distress or of the health care team. This study did not include an obser-
comfort. Another mother spoke about knowing her daugh- vational component, which may have yielded a richer and
ter’s ‘‘nature,’’ something that she did not feel the staff more complete contextual understanding of the parental
would know without her input. Parents described their role role in the PICU. In addition, the scarcity of information on
in terms of being sensitive and responsive to their child’s the parental role in the PICU directed the research to include
unique cues and sharing this information with the health a heterogeneous sample of parents. Although not a focus
care team. In so doing, parents worked in tandem with the of the current study, results do suggest prior PICU expe-
health care team and felt they were protecting their child rience generally helps inform parents of their role during
and ensuring he/she received the best care possible. subsequent PICU admissions; however, one father described
Study findings suggest it is important that parents form a his previous experience as unhelpful and felt it contribu-
partnership with the PICU staff in caring for the sick child. ted to anxiety. Further studies with larger sample sizes
In the general nursing literature, a collaborative partnership that seek to include PICU sub-populations are necessary
has been defined as ‘‘an interpersonal relationship between to determine how the parental role is impacted, and how
two or more people who work together towards a mutually participation varies between parents whose child is admit-
defined purpose’’ (Gallant et al., 2002, p. 151). In the PICU, ted for the first time and those who have had previous
that mutual purpose can be understood as providing the best experiences. Similarly, perceptions of parents whose child’s
care possible for the child from a holistic perspective. admission was planned versus those whose admission was
Parents described several ways in which the PICU team unplanned may differ in terms of role expectations; or, per-
could facilitate this aspect of the parental role, inclu- haps there is a trajectory along which role expectations
ding eliciting parents’ opinions in the team’s daily physical develop and unfold, based on the length of time the child
assessments of the child, and valuing parents’ insight about is in the PICU, and the parents’ experience and comfort
their child’s nature and personality. In the adult ICU lite- level. Other variables that may impact the parental role
rature, Williams (2005) looked at the contribution families include parents’ marital status, the child’s diagnosis and
make to the care of their loved one in the ICU from the age. Grounded theory methodology may be useful in elici-
nurses’ perspectives. Nurses noted that families provided ting this information. Finally, future research might focus on
invaluable information about the patient as a person and the effect of parental participation on the care of the child.
this, in turn, helped them respond more appropriately to
the patients’ needs. In addition, this process of sharing was Conclusions
considered vital to both the nurse—family relationship and
nurse—patient relationship in that it engendered trust in the
Building on previous research that consistently identifies
nursing care provided. It was hypothesised that this, in turn,
parental role alteration as parents’ greatest stressor during
was related to improved outcomes for the patient and the
a child’s PICU hospitalisation, this study provides new insight
family.
into parents’ perceptions of how their role may be alte-
red, and the resultant implications for clinical practice.
Obtaining information about their child Three dimensions of the parental role in the PICU were
identified, including being present and participating in their
PICU research conducted to-date has emphasised the impor- child’s care, building a trusting partnership with the health
tance of maximising the provision of information to parents care team so they can share their parental expertise, and
150 K.E. Ames et al.

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