Original Manuscript

Journal of Pediatric Oncology Nursing

Experiences of Young Children With

2020, Vol. 37(1) 21–34
© 2019 by Association of Pediatric
Hematology/Oncology Nurses
Cancer and Their Parents With Nurses’ Article reuse guidelines:
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Caring Practices During the Cancer DOI: 10.1177/1043454219874007

journals.sagepub.com/home/jpo

Trajectory

1 2 1
Karin Enskär, RN, PhD , Laura Darcy, RN, PhD , Maria Björk, RN, PhD ,
1 1
Susanne Knutsson, RN, PhD , and Karina Huus, PhD

Abstract
Children with cancer require repeated hospitalizations and the family’s everyday life and routines undergo change.
Concrete descriptions of how nurses act when caring for children with cancer throughout the various phases of care
and treatment are sparsely highlighted in the literature. The aim of this study was to describe young children with
cancer and their parents’ experiences of nurses’ caring practices over a 3-year period, from diagnosis to follow-up.
This study is based on semistructured interviews with 25 children newly diagnosed with cancer, aged 1 to 6 years, and
their parents, connected to a pediatric oncology unit in Sweden. Child and parent data were analyzed with a deductive
content analysis using Swanson’s theory of caring. The result shows that nurse care practices directed toward young
children with cancer and their parents are to some extent similar across a 3-year period from diagnosis to follow-up
but also differ in some ways. Nurses’ caring practices aim to support children and parents in the transition to a “new
normal.” Child- and family-friendly care processes include the following: creating hope and a trustful relationship,
asking rather than assuming, providing knowledge and information, performing tasks skillfully, displaying an
interest in the child’s and parents’ life outside the hospital, and helping the family to trust in the future and other
health care providers. Based on these results, we recommend the development of a standardized and structured nursing
care plan or clinical guideline with detailed information on how to carry out clinical nurse care practices in the
different phases.

Keywords
children, cancer, caring, Swanson caring theory

Background studies on children’s experiences of cancer care

About 300 children in Sweden receive a cancer diagnosis
every year, and most of these children survive
(Gustafsson, Kogner, & Heyman, 2013). However,
treatment is lengthy, aggressive, and causes adverse side
effects (Gatta et al., 2009). As survivorship increases,
the focus has shifted to living everyday life with the
effects of treat- ment over a long period of time (Darcy,
Björk, Knutsson, Granlund, & Enskär, 2016; Gustafsson
et al., 2013; Woodgate & Degner, 2004). Children with
cancer require repeated hospitalizations and undergo
invasive and pain- ful treatments and procedures, with
many adverse side effects (Enskär, Carlsson, Golsäter,
Hamrin, & Kreuger,
1997; Enskär et al., 2014; Enskär et al., 2015; Hinds
et al., 2004; Van Cleve et al., 2004). It also involves a
change in the child’s and family’s everyday life and rou-
tines (Björk, Nordström, & Hallström, 2006; Darcy,
Knutsson, Huus, & Enskär, 2014; Hildenbrand,
Clawson, Alderfer, & Marsac, 2011). A literature
review of 51
identified five issues for children: suffering because of
cancer, fluc- tuating realities, coping strategies, new
roles and respon- sibilities of the child, and practical
resources to enable managing cancer (Jibb et al., 2018).
Studies also described a change in the everyday life of
the young child, where shortly after diagnosis, the child
is described as feeling like a stranger, feeling under
attack, and feeling lonely (Darcy, Knutsson, et al.,
2014). The literature describes creating a caring
relationship with nurses (Björk et al.,
2006; Enskär et al., 2015), comfort and support for par-
ents (Ångström-Brännström, Norberg, Strandberg,
Söderberg, & Dahlqvist, 2010; Björk et al., 2006; Björk,
1
CHILD Research Group, Jönköping University,
Sweden
2
University of Borås, Sweden
Corresponding Author:
Karin Enskär, RN, PhD, Department of Care Science, Faculty of
Health and Society, Malmö University,
Sweden. Email: karin.enskar@mau.se
22 Enskär et
al. & Hallström, 2009; Darcy, Knutsson, et al.,
Wiebe,
2014;), and information during treatment and after treat-
ment is completed (Darcy et al., 2016; Gibson, Aslett,
Levitt, & Richardson, 2005; Woodgate, 2006) as vital
components for the young child’s health and well-being.
Studies on the phenomenon of caring show that caring
is present when expert physical care is combined with
the fulfillment of emotional needs and support for
ongoing daily parental care for the child in an inviting
environ- ment (Mattsson, Arman, Castren, & Forsner,
2014). Another study found that children endure
discomfort dur- ing treatment and are unable to express
their discomfort. Children found comfort from their
family and from nurses in the hospital (Ångström-
Brännström & Norberg,
2014). Nurses’ care did not always reflect the needs of
the child thereby jeopardizing the well-being of the child
and leaving them at risk of experiencing pain and
suffering (Mattsson, Forsner, Castrén, & Arman, 2013).
Parents are described as important for children’s well-
being, from the very beginning of the cancer trajectory
(Darcy et al., 2016; Gibson et al., 2005; Kästel, Enskär,
& Björk, 2011). A trusting nurse–parent partnership is
important in providing care for parents (Denis-Larocque,
Williams, St-Sauveur, Ruddy, & Rennick, 2017). Parents
perceive their role in the hospital as being present and
participating in their child’s care, forming a partnership
of trust with the health care team and being informed of
their child’s progress and treatment plan as the person
who “knows” the child best (Ames, Rennick, &
Baillargeon, 2011). Parents themselves derived comfort
from being close to their child, perceiving their child’s
strength, feeling at home in the treatment unit, and being
a family (Ångström-Brännström et al., 2010). The char-
acteristics of pediatric nursing care have been described
as professional communication, management of care,
altruism, and proficiency (Alavi, Bahrami, Zargham-
Boroujeni, & Yousefy, 2015). However, the literature
pays limited concrete attention to how nurses should act
when caring for children with cancer throughout the
vari- ous phases of care and treatment. By using a
theoretical foundation, nursing care practices can be
improved by systematically linking them to a theoretical
perspective.
Theoretical Framework: Swanson’s
Theory of
Carin
g Björk, Enskär, & Knutsson, 2014). Data for the present
Swanson’s theory of caring (Swanson, 1993), building
on the work of Jean Watson, exemplifies an approach
that promotes the practical application of caring theory.
This middle-range theory, inductively derived from
nursing research, delineates five overlapping processes
and explanation of the links between caring processes
and patient well-being. At a deeper level, the
subdimensions of each process suggest actionable
interventions that
Journal of Pediatric Oncology Nursing 22
37(1)
make the theory–practice connection intelligible and use-
ful to clinicians (Tonges & Ray, 2011). The theory
depicts caring as grounded in the maintenance of a basic
belief in people, anchored by knowing the other person’s
reality, conveyed through knowing, being with, doing
for, enabling/empowering, and maintaining belief
(Swanson,
1993). The components of Swanson’s theory are
essential components of any nurse–patient relationship
and result in interventions that “promote, restore, and
maintain opti- mal wellness for individuals” (Wojnar,
2006, p. 769). Application of Swanson’s caring theory in
caring situa- tions is prescriptive in helping individual
nurses and early acute care systems meet important
family needs (Roscigno, 2016).
Wei, Roscigno, and Swanson (2017) used Swanson’s
caring theory to study parents’ perceptions of nurses’
car- ing practices when their child was diagnosed with
heart disease. They found that parents experience caring
when nurses seek to understand them (knowing),
accompany them physically and emotionally (being
with), help them (doing for), support them to be the best
parents they can be (enabling), and trust them to care for
their child (main- taining belief). Roscigno (2016) also
investigated nurses’ caring practices with children with
brain injuries. The results indicated the importance of
involving parents in the care of their child (knowing),
respecting that parents are competent to be involved in
decision making (main- taining belief), listening to
family values and needs (being with), providing
information and emotional support in a safe environment
(doing for), and providing guidance to navigate in the
system and assistance to adjust to the situ- ation
(enabling).
This study aims to describe the experiences that
young children with cancer and their parents had with
nurses’ caring practices during the care phases of
diagnosis/ induction, active therapy, maintenance
therapy, and fol- low-up, using Swanson’s caring theory.
Method
Desig
n
This longitudinal study was part of a larger project
explor- ing how cancer affects young children’s everyday
health and functioning over a 3-year period from
diagnosis (e.g., Darcy, Knutsson, et al., 2014; Darcy,
article includes a deductive analysis of interviews with
young children and their parents conducted as part of the
larger project, this time focusing on experiences of
nurses’ caring practices. The data were collected from
children with cancer aged 3 years and older, and the
parents of all children 1 year and older, at four time
points over a 3-year period from 2011 to
2016: Shortly after diagnosis (3-9 weeks postdiagnosis),
Table 1. Participants. and participated in the first data collection (at diagnosis);
Data collection time 3–9 weeks 6 months 12 months 3 years
24 participated at the second data collection’s time point
points after diagnosis (n = 25) (n = 24) (n = 23) (n = 12) (after 6 months), and 23 at the third data collection (after
12 months). By the end of the study, in 2016, only Group
Age in years
1, consisted of 12 children, had reached 36 months post-
1 4 2 — —
2 4 3 3 — diagnosis and was included in the last data collection
3 6 7 4 1 (Time Point 4). The group of children varied in gender
4 6 5 6 2 and diagnosis (Table 1). Data were gathered from
5 5 4 5 3 parents and children aged 3 years and older at each data
6 — 3 3 3 collec- tion time point. (Table 1).
7 — — 2 2
8 — — — 1
Child’s gender Data
Female 15 14 13 8
Male 10 10 10 4
Collection
Diagnosis Two of the authors (LD and MB) conducted the inter-
Leukemia 17 16 16 9 views, the majority of which took place in the child’s
home at the participants’ choice. The semistructured
Brain and solid 8 8 7 3 interviews consisted of open-ended questions that
tumors
Treatment phase
focused on the child’s and parents’ experience of nurses’
Active or 25 23 19 1 caring practices. The interview questions were devel-
maintenance oped based on earlier research and associations within
Follow-up — 1 4 11 the group of authors for the study, all of whom were
Deceased — 1 — — qualitative researchers and nurses with experience of,
Place of interview are caring for children, and some of whom have exten-
Home 15 18 21 11
sive experience, in pediatric oncology care. This helped
Hospital 10 6 2 1
in the construction of understandable questions that
Length of interview 80 88 84 85
(median in made better sense of the subject studied (Elo et al.,
minutes) 2014; Elo & Kyngäs, 2008). The interview with
children and
Child participated in the interview municate in Swedish. Twenty-five children and their par-
Yes 19 20 21 12 ents were included in the study (Group 1 and Group 2)
No 6 4 2 —
Parents participated in the interview
Mother and father 13 12 12 6
Mother only 11 12 11 5
Father only 1 — — 1

active therapy (6 months postdiagnosis), maintenance

ther- apy (12 months postdiagnosis), and follow-up (36
months postdiagnosis). Several time points had to be used
to cap- ture the prolonged nature of the childhood cancer
experi- ence (Bearison, 1991; Docherty & Sandelowski,
1999).

Participan
ts
Children were consecutively included in the study as a
convenience sample (Polit & Beck, 2016). The first
group (Group 1) included 2011-2013 and second group
(Group
2) included 2013-2015. Verbal and written information
was initially given to parents by outreach nurses at a
pedi- atric oncology center in the west of Sweden. The
inclu- sion criteria were that the child was between 1 and
6 years of age when receiving their first cancer diagnosis
and that both children and parents should be able to com-
parents began with an open question: “Tell me what
hap- pened at the hospital?” This was followed by
questions such as “What did nurses do to help you?”
Based on the children and parent’s narratives, probing
questions were subsequently asked for clarification and
understanding, such as “Tell me more?” (Kvale, 2014).
All questions were asked to both children and parents;
in order to allow children to participate in the interview,
questions was adapted to the child’s developmental
level, as suggested by previous research with young
children (Irwin & Johnson, 2005; Spratling, Coke, &
Minick, 2012) The interviewers often talked and played
for a short time at the beginning of the interview, since
it is important to establish trust and build a rapport with
children before starting to interview them (Deatrick &
Faux, 1991; Kortesluoma, Hentinen, & Nikkonen,
2003). All inter- views were recorded and transcribed
verbatim and lasted between 49 and 104 minutes.

Data
Analysis
To allow the researchers to make valid inferences from
the data in their context, a qualitative content analysis
method according to Krippendorff (2004) was used, and
the deductive approach as described by Elo and Kyngäs
(2008) guided the analysis process. Deductive content
analysis was used as the structure of analysis and was
Table 2. Example of Deductive Analytical Process: First Time Point, Diagnosis/Induction.
Statement Code Caring process
“Very sweet nurses and so on. It’s Sweet nurse; To start
incredibly important, how to start a new relationship
with greeting the child and start a
relationship”
“There is a lot of information Information is
shortage. . . . I think information important for well-
is very, very important for both being
children and parents for their well-
being”
operationalized on the basis of previous knowledge (Elo
& Kyngäs, 2008; Graneheim, Lindgren, & Lundman,
2017; Graneheim & Lundman, 2004). In the first step of
the analysis, the transcripts from the interviews from the
four time points (data from Time Points 1-4 for Group 1
and Time Points 1-3 for Group 2) were read as
individual units to explore similarities and differences
between the time points/phases. The reading process was
performed independently by all authors, and texts with
the same meanings were marked with notes and headings
in the text as initial codes. After reading and coding the
four data phases of the child’s cancer trajectory, the
research- ers compared and discussed the coding and
agreed that the data from each time point should be
analyzed sepa- rately. In the next step, a categorization
matrix was devel- oped and used to identify nurses’
caring practices based on Swanson’s five caring
processes. In the following step, the codes were
deductively grouped (Elo & Kyngäs,
2008; Graneheim et al., 2017; Graneheim & Lundman,
2004) into the Swanson’s (1993) five caring processes.
After that, all codes were grouped into the same caring
process (e.g., knowing) and were divided into subcatego-
ries based on their similarities and differences (Table 2).
The links between them were explored until consensus
was reached among the authors. In the last step of the
analytical process, the subcategories were abstracted into
a caring process category, representing the latent content
(Graneheim et al., 2017; Graneheim & Lundman, 2004)
of all subcategories into one caring process. Table 2
illus- trates the analytical process. These steps were
repeated for all four data collections time points/phases.
This pro- cess resulted in categories describing nurses’
caring prac- tices in caring for young children with
cancer related to each time point/phase of the child’s
cancer trajectory: diagnosis/induction, active therapy,
maintenance therapy, and follow-up (Table 3).
Ethical
Considerations
This study has followed the ethical recommendations of
the World Health Organization & the Council for
International Organizations of Medical Sciences (2016).
Subcategory Category
Knowing The start is important Create a trusting
for the possibility of relationship
developing a good
relationship
Enabling Need for more Provide child and
information parents with
knowledge
Ethical approval was given by the Ethical Review
Board, Linkoping, Sweden (dnr2010/343-31), and the
four ethical principles of autonomy, beneficence, non-
maleficence, and fairness (Beauchamp & Childress,
2012) were taken into account throughout this study.
The information letter stated that participation was con-
fidential and voluntary and that the choice to participate
or not would not influence the forthcoming care at the
unit, which the interviewers reiterated before the inter-
view began.
Results
The deductive analysis resulted in categories describing
nurses’ caring practices in caring for young children with
cancer related to each phase of the disease trajectory
(Table 3), based on Swanson’s five caring concepts.
Caring Practices at Diagnosis and
Induction
Therap
y
Five categories of nursing practices are included for the
first phase, following the child’s diagnosis, which corre-
spond to each of Swanson’s caring processes (Table 3).
Infuse Hope in Both the Child and Their Parents
(Maintaining Belief). During the first phase, children
and parents describe the importance of the nurse
infusing hope in them. This could be done by
recognizing the child and parents’ emotions and needs
and having faith in their abil- ity to handle situations,
both surviving the disease and getting through
procedures, as well as involving the child in the
treatment and procedures.
Then she came in and saw that I was sad. I saw she had
tears in her eyes herself, and she cried with me, which I
thought was very nice. Then she said that we can never
understand what you’re going through, but we know it’s
hard for you. (Parent 25)
Create a Trusting Relationship (Knowing). According
to the interviews, it is essential to create a trusting
relationship,
Table 3. Nurses’ Caring Practices Related to Swanson’s Caring Concepts.

Nurse caring
practices/Swanson In maintenance
caring processes At diagnosis/induction In active therapy therapy At follow-up

Maintaining belief Infuse hope in both the
child and their parents
Knowing Create a trusting
relationship
Being with Let parents act as a secure
base for their child
Doing for Create stability in life for
the child and their
parents
Enabling Provide the child and
parents with knowledge
Believe that the child Trust the child Highlight positive
and parents have the and parents to experiences and happy
capabilities to handle carry out tasks moments
their situation themselves
Focus on each family Do not assume Help parents and children
member individually anything reflect on the entire
and listen to their cancer trajectory
experiences and needs
Perform skillfully and Focus on the child Develop a care plan
have extensive for future health care
knowledge contacts
Create a child-friendly Involve the child in Help the parents believe
environment practical nursing in and trust other health
care and decision care settings
making
Offer specific meetings Support the Help children and parents
with the child and their parents in know what is happening
parents to assess the handling and where to turn for
needs of and provide everyday knowledge and support
information functioning

especially at the beginning of the child’s disease. “Very
sweet nurses. It’s incredibly important how they greet
the child and start a relationship” (Parent 8). Building a
trust- ful relationship is a precursor for the possibility of
achiev- ing a long-lasting good relationship, which can
help children and parents through tough periods. In the
begin- ning, it is easier for parents to focus on a few
nurses and not too many. “When we come for planned
treatments, they try to have the same nurse; even when
we come in unplanned, they always try” (Parent 18).
Let Parents Act as a Secure Base for Their Child
(Being With). Parents pointed out the importance of
letting par- ents act as a secure base for their child, by
allowing them to be physically and mentally present.
The child screams help, mummy, help me, and then we’re
standing on the other side and helping the nurses, it feels
very wrong. Somewhere in all of this it’s in our arms she
needs to climb up in when she needs comfort and safety.
(Parent 2)
Parents want nurses to show them that they have time for
both the child and the parents, even in stressful moments.
In this phase, it is important to give parents a specific
time for conversations where the nurse communicates a
feeling that she/he is interested in the individual
child/parent by showing them personal engagement and
empathy.
Create Stability in Life for the Child and Its Parents
(Doing for). Cancer involves a threat to the child’s life
and the
family’s secure everyday life. Children and their parents
pointed out that nurses can create some sort of stability
in life for them. This could be done by carefully
assessing and planning nursing interventions and giving
children and parents the opportunity to sleep and rest. “It
may be good to know if we are going to be in the
hospital for two hours or a whole day; it’s about family
planning too” (Parent 17).
Provide Child and Parents With Knowledge (Enabling).
Chil- dren and parents described their need for
knowledge about the disease, treatment, and
procedures to be able to understand their new situation
and its effect on every- day life. At the beginning of the
cancer trajectory, it was hard for them to take in a lot of
information. Therefore, they suggest that nurses give
small amounts of informa- tion at different time points,
so they can have an oppor- tunity to take it in and
consider it. “There is a lot of information shortage . . . I
think information is very, very important for both
children and parents for the well-being” (Parent 17).
Caring Practices During Active
Therapy
In the second phase, active treatment, five categories of
nursing practices corresponding to each of Swanson’s
caring processes were included (Table 3).
Believe That the Child and Parents Have the
Capabilities to
HandleTheir Situation (Maintaining Belief). When some
time
has passed since the child’s diagnosis, the child and their
parents want the nurse to believe in their capability to
handle their situation. According to children and parents,
nurses can create and maintain a positive atmosphere that
surrounds them. At this point, children now have quite
extensive experience about many procedures, they also
have wishes and demands about how things are to be car-
ried out: “I don’t like it, but I’m used to it—I’ve had it so
many times before and now it’s just the last medicine left
and then it’s time to take it away for good” (Child 1).
Therefore, children want to participate in their own care
and plan it together with nurses “If she says she wants a
probe, she needs a probe” (Parents 3).
Focus on Each Family Member Individually and Listen
to Their Experiences and Needs (Knowing). In this
phase, the child has begun to come to terms with their
disease and their new everyday life. But children and
parents stress the importance of focusing on each family
member individu- ally and listening to their experiences
and needs and not taking things for granted. “Then it
feels right that they have been listening to us. This has
not been heard of in medical care before, that they
should listen” (Parent 9).
Perform Care Skillfully and Have Extensive Knowledge
(Being With). According to children and parents, they
want nurses to have extensive knowledge and therefore
be able to perform care skillfully. Skillful nurses were
perceived as being able to focus on the child and not
only the par- ents. “It requires certainty in what to do,
that it goes smoothly so that you do not have to hesitate.
When nurses have the ability to easily distract the child
during the sec- onds that it takes to do the intervention”
(Parent 14).
Create a Child-Friendly Environment (Doing for).
Skillful nurses also had the ability to make children feel
special. “Those who bust most with her, of course it
becomes her favorites” (Parents 12). Another aspect of
how to create a child-friendly environment was
described in terms of respecting the child’s integrity. “I
think there is greater respect for her, or how can I say
it . . . it’s important to respect the integrity of a person in
care” (Parent 1).
Offer Specific Meetings With the Child and Parents to
Assess the Needs of and Provide Information
(Enabling). Children and parents describe having received
information and knowing what will happen as supportive
and creating a feeling of thankfulness toward nurses “It
might have been better if you had more time and said that
now we need to sit down and talk, that the initiative
comes from nurses as well as us” (Parent 19). A
prerequisite for feeling supported was having enough
information. Children and parents pointed out the
importance of how and when information was delivered.
They wanted nurses to develop a plan to
offer specific and repeated meetings with the child and
their parents in order to assess their information needs
and to give them the necessary information and
explanations.
Caring Practices During Maintenance
Therapy
In the third phase, on maintenance treatment five catego-
ries of nursing practices corresponding to each of
Swanson’s caring processes were included (Table 3).
Trust the Child and Parents to Carry Out Tasks
Themselves (Maintaining Belief). A year after diagnosis,
children and parents build on their already extensive
experience and knowledge of both their care needs and
wants. According to them, nurses need to trust the child
and parents to carry out tasks themselves. “They never
get upset when we suggest they listen to our advice, but
it’s as if they value our experience and opinion” (Parent
12).
Do Not Assume Anything (Knowing). Children and
par- ents recognized themselves as experts on the
disease and treatment “So I said to the nurse, don’t you
touch me with your cold hands, warm them up
first/ . . . /You warm your finger first, on a heating
pad” (Child 3). Therefore, they do not want nurses to
assume that they know the family’s everyday life and
caring needs best. This also goes for nurses with
extensive experience in pediatric oncology care. They
want the nurses to ask them, “He tells them just how
he wants it” (Parent 3).
Focus on the Child (Being With). Parents appreciate it
when nurses take the time and focus on the child,
without mak- ing comments about how busy they are,
even if nurses have a lot to do. However, if nurses were
very busy, par- ents appreciate it when nurses schedule a
more appropri- ate time when they can talk in a more
relaxed atmosphere. Parents experienced better care if
there was continuity in meeting the same nurses and
when there was a dedicated nurse responsible for their
child.
It’s also very important how they treat him, you know! How
they approach him before doing anything, it makes a big
difference to his reaction, that the staff take that extra
minute and just talk to him and ask him if he maybe wants
to help. (Parent 13)
Involve the Child in Practical Nursing Care as Well as
Deci- sion Making (Doing for). In this phase, children
stated that they knew the routines and how things were
usually car- ried out. Children still wanted to be
involved in practical nursing care, as well as in decision
making. Even if par- ents stressed the importance of
standardized routines, they also wanted nurses to be
flexible. “Eh . . . she (the child) always lifts up the CVC
[central venous cathe- ter] herself. It’s like that. Then
she is careful about what
she is doing herself and what others to do, depending on
who she likes and what she does not like” (Parent 3).
Support the Parents in Handling Everyday Functioning
(Enabling). Even though parents stated that they had
broad and in-depth knowledge concerning their child and
their treatment, they still wanted repetition and more in-
depth information about things they had already gone
through. However, this knowledge sometimes
contributes to par- ents’ questioning the care,
information, and treatment their child receives. Parents
pointed out that information needs to be individualized,
based on the child’s age and maturity, as well as their
experiences. “When we were hospitalized, they talked
about what happens if he gets chickenpox” (Parent 7).
Also, in this phase parents pointed out their need for
support in handling everyday functioning: For example,
they asked for support in con- tacting health care
services and schools, as well as sup- port in taking care
of the child’s siblings, the relationship between spouses,
how to handle and set limits for their child and raise
them to take care of themselves, such as getting enough
physical activity. “I think health care can come up with
something that pushes the parents to spend time with the
child’s siblings as well” (Parent 14).
Caring Practices During
Follow-up
In the last phase, follow-up, five categories of nursing
practices corresponding to each of Swanson’s caring
pro- cesses were included (Table 3).
Highlight Positive Experiences and Happy Moments
(Main- taining Belief). When the child’s treatment was
completed, the child could not always recall fully what
they have been through. But they often highlighted
positive experiences and happy moments during their
cancer trajectory. “She (the nurse) is terrific and crazy. I
love it” (Child 6). Parents stressed that they did not have
as much contact with the pediatric oncology team any
longer and therefore had to deal with “ordinary care”
themselves at their primary health care facility. “They
know exactly how they should interact with her now, at
least there (the children’s oncol- ogy department), but not
in other places” (Parent 6)
Help Parents and Children Reflect on the Entire
CancerTrajec- tory (Knowing). Parent wished they had
a meeting with the pediatric oncology team when the
child ended treatment to help parents and children reflect
on the entire cancer trajectory. They wanted to have a
meeting to discuss fol- low-up and everyday life issues.
“Have a meeting and talk about it” (Parent 6).
Develop a Care Plan for Future Health Care
Contacts
(Being With). After the child ended treatment,
parents
experienced enduring emotional stress, even if the child
felt well. Some parents reported depressive symptoms
and a lack of support. Parents asked for emotional sup-
port: for example, from the hospital psychologist or
from other services such as social workers. They also
pointed out the need for a care plan for future health
care contacts. “Do not want anyone else (caregiver) . . .
that would be just insane” (Parent 6).
Help the Parents Believe in and Trust Other Health
Care Set- tings (Doing for). Parents felt thankful and
satisfied with the care provided throughout the child’s
trajectory. But for parents, the pediatric oncology unit
was still seen as a secure base providing support and
treatment. For them, the unit represented safety, with
highly skilled and com- petent pediatric nurses working
together with an entire team to support them. “Everyone
was nice, but there was something extra in her attitude”
(Parent M6). They also described the hardship they
experienced when they turned to other health care
settings for support. Parents described problems in
believing and trusting other health care set- tings, such as
primary health care services. “Here they are not like
those primary care doctors who sit and stand in front of
you and google information” (Parent 11).
Help Children and Parents Know What Is Happening
and Where to Turn for Knowledge and Support
(Enabling). Par- ents experienced the end of the child’s
treatment as uneasy and frightening and were constantly
worried and about short- and long-term side effects.
Parents also found that information and support from
nurses were helpful in diminishing these worries. They
wanted nurses to help them understand what had
happened and to show them where to turn for further
knowledge and support. A supporting intervention for
the parents was meeting other parents in the same
situation. “A nurse doesn’t really know what it’s like to
have a child with a tube; other par- ents know” (Parent
17).
Discussion
Discussion of the
Results
The results of this study show that nurses’ caring prac-
tices in caring for young children with cancer and their
parents have some similarities across the different phases
of the child’s cancer trajectory. But they also show a lot
of specific differences over time. Therefore, nurses need
to plan caring practices accordingly, throughout the
entire illness trajectory. As we know, caring does not
always occur in response to the child’s needs, which
jeopardizes the well-being of the child and leaves them
at risk of experiencing pain and suffering (Mattsson et
al., 2013). Positive caring behaviors toward pediatric
patients have
been proven to decrease the risk of patients exhibiting
behavioral and verbal signs of distress (Bai, Harper,
Penner, Swanson, & Santacroce, 2017). In the early
phases of the trajectory, it is crucial to create hope for
children and parents and for them to have a trusting rela-
tionship with their nurses and the care being given. This
can be accomplished by focusing on the child, by show-
ing empathy, by asking rather than assuming and by
being present both physical and mentally. Another
important aspect during the earlier phases is to help and
support the child through distressing and painful
procedures. The focus needs to gradually shift from a
parent/family-cen- tered approach toward the child and a
child-centered nursing care approach. During the later
stages of the can- cer trajectory, children and parents
need support in reflecting and processing what has
happened. But they also need to know where to turn for
information, support, and follow-up. This study clearly
shows that the needs of children and parents differ
throughout the phases of the cancer trajectory. Perhaps a
standardized and structured nursing care plan or clinical
care guidelines could be helpful for nurses, offering
detailed information on how to carry out nursing care in
the different phases: diagno- sis, active therapy,
maintenance therapy, and follow-up (Enskär, 2012; Mu
et al., 2015). Application of Swanson’s caring theory
helps individual nurses meet children and parent’s needs
in their caring practices (Roscigno, 2016). Therefore, the
rest of this discussion will be based on the Swanson’s
five caring processes (Swanson, 1993; Wojnar,
2006).
Caring Practices Related to
Maintaining
Children’s and Parents’
Belief
According to Swanson (1993, Wojnar, 2006), maintain-
ing belief incorporates a fundamental belief in people
and their abilities to make it through events and
transitions and to face a future with purpose. In this
study, the results show that children and parents want
nurses to show hope by creating a trusting relationship.
Creating good rela- tionships with nurses is described in
the literature as vital components for young child’s
health and well-being (Björk et al., 2006; Enskär et al.,
2015). Parents of chil- dren with cancer experience
moments of hope for their child’s recovery and survival,
thanks to a good nursing relationship (Ångström-
Brännström et al., 2010). In this study, this was
especially evident in the interviews con- ducted at the
beginning of the trajectory. A trusting rela- tionship was
also described as an important factor for giving hope to
children and parents in the new and shock- ing situation
of having a cancer diagnosis. The impor- tance of nurses
having good rapport with children and parents have
previously been highlighted in the literature. Children
aged 0 to 7 years pointed out that important
aspects of feeling cared for include social competence,
amusement, time, and continuity (von Essen, Enskär,
Haglund, Hedström, & Skolin, 2002). In the absence of
continuous, caring relationships with staff, parents
reported frustration, hypervigilance, and mistrust about
the quality of care that their children received (Heller &
Solomon, 2005). Nurses working in a pediatric unit
developed good relationships with the children and their
parents, and this relationship comforted them. The qual-
ity of nurses’ relationships with the children was evident
in all their actions (Ångström-Brännström & Norberg,
2017). Additional education for nurses can make them
more secure in their work and thereby increase their con-
fidence in giving nursing care (Pergert, af Sandeberg,
Andersson, Márky, & Enskär, 2016). If nurses are given
opportunities for continuous education and reflection, it
can give them feelings of satisfaction at being able to
ful- fil children and families’ needs and thereby offer a
high- quality care (Enskär, 2012).
Receiving a cancer diagnosis and starting treatment
creates profound changes in the child’and family’s
every- day life and routines (Björk et al., 2006; Darcy,
Knutsson, et al., 2014; Hildenbrand et al., 2011).
Changes in the everyday life of the child have resulted in
the child feel- ing lonely (Darcy, Knutsson, et al., 2014)
and feeling the need to meet friends (von Essen et al.,
2002). Maintaining belief is an aspect that concerns
meaningful relationships, such as encouraging
friendships with peers, during treat- ment periods. This
type of support can be achieved by collaborating with
the child’s preschool/school and using modern
technology to maintain contact with peers (Einberg,
Nygren, Svedberg, & Enskär, 2016). af Sandeberg,
Johansson, Björk, and Wettergren (2008) have shown
the social benefits of school attendance or contact with
school for older children with cancer. Children who
attended school felt better, experienced a higher quality
of life, and increased their sense of inde- pendence (af
Sandeberg et al., 2008). According to this study, nurses
need to take an interest in children’s every- day life
outside the hospital and bring up leisure activities and
peer relations when caring for children. It is impor- tant
to plan for ongoing contact with school services and peer
relations. This can be done by inspiring positive atti-
tudes and empowerment aimed at caring for the child
and helping the family build the necessary health-related
communication capacities in order to clarify the child’s
condition to these services (Mu et al., 2015).
Caring Practices Related to Knowing in Children
and Par- ents. According to Swanson (Swanson,
1993; Wojnar,
2006), knowing entails striving to understand an event as
it had meaning in the life of another. The results
presented in our study show that a person-centered
philosophy of care is required throughout the cancer
trajectory. This is
also stated by Darcy et al. (2016). It is important for
nurses to focus mainly on the child and the child’s needs.
At the beginning of the cancer trajectory, the child is
more dependent on their parents for protection and sup-
port. But as time goes by, the child starts to engage with
nurses with a relationship independent from their
parents. Thus, the child needs to be seen as a person in
their own right and not only a family member or patient,
throughout the entire cancer trajectory. In family-
centered care, nurses’ interpretation and clinical
application has been highly focused on parents rather
than on children. This is confirmed by Coyne, Hallström,
and Söderbäck (2016), who argue for a conceptual move
from a family-centered to a child-centered care
approach. They argue that par- ents’ authority and
nurses’ professional dominance con- struct an
asymmetric relationship toward the child, which may
shift the focus away from the child. The authors also
state that nurses need to renew efforts to promote the
fun- damental principles of children’s rights to
protection, promotion, and participation. Furthermore,
they argue for strengthening the child’s perspective and
views (Coyne et al., 2016).
Caring Practices Related to Being With in Children
and Par- ents. According to Swanson (Swanson,
1993; Wojnar,
2006), being with includes being genuinely present for
others in order to convey that their experiences have sig-
nificance. Repeated hospitalizations, including invasive
and painful treatments and procedures, are well-known
challenges in pediatric oncology care (Enskär et al.,
1997; Enskär et al., 2014; Enskär et al., 2015; Hinds et
al., 2004; Van Cleve et al., 2004). Our study strongly
points out the need for children to have parents as a
refuge—a place of safety and comfort they can retreat to.
The child needs to have a secure base or safe haven to
turn to where they can feel protected at times of trauma
and uncertainty (Björk et al., 2006; Darcy et al., 2016).
Experiencing fear is often a central concern for younger
children during procedures. Providing children with
opportunities to control elements of the procedure
creates a foundation for active participa- tion, and vice
versa (Karlsson, Rydström, Nyström, Enskär, & Dalheim
Englund, 2016). Supporting children during procedures
consists of guiding them through a shared situation that
is mutually beneficial to the child, the parent, and the
nurse. Play during procedures is an important tool that
enables caring practices to be per- ceived as positive
(Karlsson, Dalheim Englund, Enskär, Nyström, &
Rydström, 2016).
Caring Practices Related to “Doing for” Children and
Par- ents. According to Swanson (Swanson, 1993;
Wojnar,
2006), doing for consists of doing for the other persons
what they would do for themselves, if possible. The
results of our study show that nurses need to confirm
what interventions and support the child will gain from,
in dialogue with children and parents. Children and par-
ents need to feel involved and engaged in planning
proce- dural care (Darcy, Knutsson, et al., 2014). Parents
have reported that later on in the cancer trajectory, they
con- sider themselves to be the experts on their own
children’s needs and wishes and are willing to give
advice to nurses on how to carry out procedures in the
most efficient and painless way (Kästel & Enskär, 2013).
Caring Practices Related to Enabling for Children and
Par- ents. According to Swanson (Swanson, 1993;
Wojnar,
2006), enabling involves assisting individuals to acquire
the tools they need to be able to care for themselves,
including transition through life-changing events. The
results of our analysis pointed out the importance of
knowledge and information as a way to adapt and cope
with new and stressful situations. Even after treatment is
completed, the need for information and support contin-
ues to be important (Darcy et al., 2016; Gibson et al.,
2005; Woodgate, 2006). The complex body of informa-
tion about the disease that both children and parents need
to cope with is a factor that contributes to experiences of
stress (Landier et al., 2016). Kästel et al. (2011) pointed
out that the timing with which information and education
is provided to children and families are important. At the
beginning of the cancer trajectory, all family members—
especially young children—have finite abilities to under-
stand and assimilate all new information. The provision
of information and education to children needs to be tai-
lored to the individual child and distributed according to
the child’s age, maturity, and cognitive abilities (Rune-
son, Mårtenson, & Enskär, 2007). It is important to have
strategies for how to prepare each child prior to admis-
sion, as well as, during, and after the hospital visit, and
to understand which additional factors (such as trust and
a familiar environment) have an influence on the child’s
experience (Runeson et al., 2007). An educational inter-
vention for parents was tested and evaluated and found
to be highly satisfactory (Ringnér, Björk, Olsson, &
Grane- heim, 2015; Ringnér, Karlsson, & Hällgren
Graneheim,
2015). Another good example is the use of mobile health
technology to support families. For example, the Oncol-
ogy Family App was found to be an efficient and conve-
nient way to provide the needed information (Slater,
Fielden, & Bradford, 2018). Therefore, nurses need to
plan information and support pathways of dissemination
throughout the cancer trajectory (Darcy et al., 2016).
Young adults surviving cancer reported that they had
received insufficient support from health care services on
how to handle physical, mental, and social changes in
their life after the disease (Svedberg et al., 2016). There-
fore, nurses must listen to children and accept their emo-
tions of shock, anger, and loss in facing a new normal
(Darcy et al., 2016; Mu et al., 2015), as well as their fear limitation of the study is that it includes mainly voices of
of relapse and short- and long-term side effects. The families with
results of the present study indicate a need for children
and parents to manage and process the consequences of
the disease and a need for continued support over time.
This has also been previously stated by Svedberg et al.
(2016). Nurses can invoke and emphasize positive
moments in the cancer trajectory and help children and
parents reflect on children’s cancer trajectory. Planned
and structured support beyond the initial diagnosis and
treatment period could help children and families
through the transition to a new normal (Darcy et al.,
2016). Expe- riences of psychosocial issues are the main
research focus in Swedish pediatric oncology (Enskär et
al., 2014; Enskär et al., 2015). However, the clinical
implications of these studies are not well articulated,
suggesting that there is an urgent need to transform
research results into guidelines for implementation in
this area (Enskär et al.,
2014; Enskär et al., 2015; Toruner & Altay,
2018).

Methodological
Discussion
The study used a qualitative design based on interviews.
It was found that the research question matched the
method, which matched both the data and analytical
procedure, and thus methodological coherence was
obtained. Without research in this area, approaches by
parents and nurses do not consider children’s opinions,
which could have signifi- cant influences on the type of
caring practices provided. Even so, in this study most
nurse caring practices were cited by the parents, with
children nodding in agreement and filling in details,
making the parents’ voices a comple- ment to the
children’s data rather than a substitute for it.
Research with children and parents is not without
methodological challenges, but it could offer new possi-
bilities for providing nurses with insight into caring prac-
tices throughout the entire cancer trajectory. Although
the interview context with each child and their parents
was unique at each of the five times they were
interviewed, the focus was kept on children’s and
parents’ experiences of nurse caring practices when
gathering data and in the analyses process (Kortesluoma
et al., 2003).
This study aimed to be clearly written, with extensive
descriptions of the context, procedures, selection process,
and characteristics of the participating children and the
data collection and analysis processes. The findings
reflect children and parents’ voices, which have been
included to show connections between the data and
results, as an indi- cation of the trustworthiness of the
results (Polit & Beck,
2016). The study was designed as heterogenic and thus
included families of children with all types of cancer
diag- noses, so that the findings could be generalized to
all chil- dren with cancer (Polit & Beck, 2016). One
children with leukemia, since the majority of the partici-
pating children had a leukemia diagnosis. This fact
reflects the high incidence of leukemia in this age group
(Gibson
& Soanes, 2008). Another limitation of the study is that it
is not known if all eligible children and parents were
invited to participate. It is possible that families who
were not invited or chose not to participate had
experiences that differ from those of the participants in
the present study. These circumstances need to be
considered in relation to the trustworthiness of this study
(Polit & Beck, 2016).
To ensure trustworthiness, the analysis is described
thoroughly (Elo et al., 2014). The data were rich and suf-
ficient to cover all aspects of the phenomenon. The
analy- sis and categorization were performed by all three
researchers individually to increase comprehension, the
soundness of data interpretation, and consistency (Polit
& Beck, 2016). All researchers met and discussed any
diver- gent opinions concerning the categorization and
repre- sentativeness of the data as a whole (Elo et al.,
2014).
The transferability of the findings in this study may
also be limited to parents and children with cancer in
Sweden. However, it is plausible to believe that the find-
ings could be similar if a similar group in a similar con-
text were studied in the same way (Lincoln & Guba,
1985). The findings may also be applicable to other
groups of parents and children with long-term illnesses
who experience repeated or prolonged hospitalizations.

Implications for
Practice
Nurses’ caring practices are not always in sync with chil-
dren and parents at critical time points (Figure 1). Nurse
caring practices need to be developed that support and
help children and families in the transition to a new nor-
mal in the hospital and also outside the hospital, both
dur- ing and beyond the treatment period. Therefore, we
recommend that nurses develop a standardized and struc-
tured nursing care plan or clinical guidelines with
detailed information on how to carry out clinical nurse
caring practices in the different phases throughout
children’s cancer trajectory: at diagnosis, during active
therapy and maintenance therapy, and in the follow-up
phase.

Conclusions
Nurses’ caring practices aim to support children and par-
ents in the transition to a new normal. Child- and
family- friendly caring processes are those that create
hope and a trusting relationships, that encourage nurses
to ask and not assume, that provide knowledge and
information, that involve skillfull performance of tasks,
that display interest in children’s and parent’s life
outside the hospi- tal, and that help them trust in the
future and in other health care providers.
 Caring practices at diagnosis/induction
•  Infuse hope in both the child and their parents
•  Create a trusting relationship
•  Let parents act as a secure base for their child
•  Create stability in life for the child and their parents
•  Provide the child and parents with knowledge
Caring practices practice in active therapy
•  Believe that the child and their parents have the capabilities to handle their situation
•  Focus on each family member individually and listen to their experiences and needs
•  Perform skillfully and have extensive knowledge
•  Create a child-friendly environment
•  Offer specific meetings with the child and their parents to assess information needs and provide information
Caring practices in maintenance therapy
•  Trust the child and their parents to be able to carry out tasks themselves
•  Do not assume anything
•  Focus on the child
•  Involve the child in practical nursing care and decision making
•  Support the parents in handling everyday functioning
Caring practices during follow-up
•  Highlight positive experiences and happy moments
•  Help parents and children to reflect on the entire cancer trajectory
•  Develop a care plan for future health care contacts
•  Help the parents to believe and trust other health care settings
•  Help children and parents understand what is happening and where to turn for knowledge and support

Figure 1. Suggested nurses’ caring practices in the different phases of the child’s trajectory.

Acknowledgments Alavi, A., Bahrami, M., Zargham-Boroujeni, A., & Yousefy,

We would like to thank the study participants and the
consultant nurses who helped recruit the participants.
Authors’ Note
Karin Enskär is also affiliated with Malmö University, Sweden.
Susanne Knutsson is now affiliated with Jönköping University,
Sweden and Linnaeus University, Sweden.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with
respect to the research, authorship, and/or publication of this
article.
Funding
The author(s) disclosed receipt of the following financial sup-
port for the research, authorship, and/or publication of this arti-
cle: This study has been funded by grants from the Swedish
Childhood Cancer Fund.
ORCID iD
Karin Enskär https://orcid.org/0000-0001-8596-6020
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Author Biographies
Karin Enskär, RN, PhD, is a pediatric nurse and professor
of Care Science, Faculty of Health and Society at Malmö
University in Sweden. Her research focuses on nursing care
for children and adolescents with cancer, and their families, as
well as children with other chronic diseases, including pain
and pain management.
Laura Darcy, RN, PhD, is a pediatric nurse and senior lecturer
at the Faculty of Caring Science, Work Life, and Social
Welfare
at the University of Borås in Sweden. Her main research focus
is the experiences of young children in hospital care and the
everyday life of young children living with cancer and other
long-term conditions.
Maria Björk, RN, PhD, is a pediatric nurse and associate pro-
fessor in health and welfare at the School of Health and
Welfare at Jönköping University in Sweden. She is also a
research fel- low at the CHILD Research Group at Jönköping
University. Her research mainly focuses on nursing care for
pediatric oncol- ogy patients and their families.
Susanne Knutsson, RN, PhD, is an intensive care nurse and
senior lecturer at the Department of Health and Caring Sciences
at Linnaeus University in Sweden. Her research is focused on
nursing care in the intensive care units, as well on children as
relatives.
Karina Huus, PhD, is a pediatric nurse and associate professor
of health and welfare at the School of Health and Welfare at
Jönköping University in Sweden. She is also a research fellow at
the CHILD Research Group at Jönköping University. Her
research mainly focuses on children’s rights and children with
disabilities.