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20/12/2023, 14:23 Children Undergoing Radiotherapy: Swedish Parents’ Experiences and Suggestions for Improvement | PLOS ONE
Children Undergoing Radiotherapy: Swedish Parents’

Experiences and Suggestions for Improvement
Charlotte Ångström-Brännström , Gunn Engvall , Tara Mullaney, Kristina Nilsson, Gun Wickart-Johansson,
Anna-Maja Svärd, Tufve Nyholm, Jack Lindh, Viveca Lindh
Published: October 28, 2015 https://doi.org/10.1371/journal.pone.0141086
Abstract
Approximately 300 children, from 0 to 18 years old, are diagnosed with cancer in Sweden every year. Of these children, 80–90 of
them undergo radiotherapy treatment for their cancer. Although radiotherapy is an encounter with advanced technology, few studies
have investigated the child’s and the parent’s view of the procedure. As part of an ongoing multicenter study aimed to improve
patient preparation and the care environment in pediatric radiotherapy, this article reports the findings from interviews with parents
at baseline. The aim of the present study was twofold: to describe parents’ experience when their child undergoes radiotherapy
treatment, and to report parents’ suggestions for improvements during radiotherapy for their children. Sixteen mothers and sixteen
fathers of children between 2–16 years old with various cancer diagnoses were interviewed. Data were analyzed using content
analysis. The findings showed that cancer and treatment turns people’s lives upside down, affecting the entire family. Further, the
parents experience the child’s suffering and must cope with intense feelings. Radiotherapy treatment includes preparation by skilled
and empathetic staff. The parents gradually find that they can deal with the process; and lastly, parents have suggestions for
improvements during the radiotherapy treatment. An overarching theme emerged: that despair gradually turns to a sense of
security, with a sustained focus on and close interaction with the child. In conclusion, an extreme burden was experienced around
the start of radiotherapy, though parents gradually coped with the process.
Citation: Ångström-Brännström C, Engvall G, Mullaney T, Nilsson K, Wickart-Johansson G, Svärd A-M, et al. (2015) Children
Undergoing Radiotherapy: Swedish Parents’ Experiences and Suggestions for Improvement. PLoS ONE 10(10): e0141086.
https://doi.org/10.1371/journal.pone.0141086
Editor: John W. Glod, National Cancer Institute, UNITED STATES
Received: December 4, 2014; Accepted: October 3, 2015; Published: October 28, 2015
Copyright: © 2015 Ångström-Brännström et al. This is an open access article distributed under the terms of the Creative
Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the
original author and source are credited
Data Availability: All relevant data are within the paper.
Funding: Funding provided by grant number PR 2013-0025, The Swedish Childhood Cancer Foundation
(Barncancerfonden), URL: http://www.barncancerfonden.se. TN received the funding.
Competing interests: The authors have declared that no competing interests exist.
Introduction
Every year, approximately 300 children between 0–18 are diagnosed with cancer in Sweden [1]. Depending on their diagnosis,
treatment may include chemotherapy, surgery, radiotherapy, or some combination of these. According to data from the Swedish
quality assurance registry for pediatric radiotherapy (RADTOX), 80–90 children were treated with radiotherapy each year during
2008–2013 (unpublished). Children undergoing cancer treatment often experience pain, fear and worry due to the disease,
treatment-related pain, and side-effects of drugs [2]. They also experience stressors related to cancer treatment and side-effects,
including pain, hair loss and blood tests, and they have to endure invasive and strenuous treatments [3].
Parents of children diagnosed with cancer have described the impact of diagnosis and treatment as devastating and associated
with feelings of shock, upset, anger and stress. Furthermore, they express sorrow, anxiety and feelings of uncertainty about their
child’s prognosis [4–6]. Parents often want to be close to their child, doing all they can, watching over and acting on behalf of their
child, comforting and supporting [7], and their care burden increases [6]. Parents play an important, but emotionally demanding,
role during this process. In moments of despair, meaningful activities like caring for the child can lessen the suffering. Parents
struggle to view treatment with optimism and hope, while the question of their child’s survival is ever-present. They fear the death of
their child [4, 5].
Research has shown that when a child is diagnosed with cancer and treatment starts, the whole family is affected [4, 6]. Parents
describe their lived experience of going through the child’s cancer treatment as a daily struggle in which the family’s normal daily
life is disrupted and they have to focus only on the ill child [8]. It is a taxing period, and the entire family is in need of support to
ease their burdens and get through the crisis [8, 9].
Though radiotherapy is a noninvasive treatment per se, it can be both stressful and challenging for children. Children are exposed
to a new, unknown and highly technological environment with large radiation equipment. Additionally, the child can feel threatened
by the requirement of remaining alone in the treatment room during treatment. Both of these factors can cause the child stress and
anxiety [10, 11]. For both parents and children, the difficulty of understanding how radiation works, as well as its expected effects
and side-effects, can provoke anxiety. Both children and parents have a need for preparation and information before radiation
treatment starts [5, 12]. Previous work by Jackson et al [5] identified parents’ need for information, noting that parents were often
too stressed out to absorb this information early on in the process.
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0141086 1/9
The importance of parental involvement before, during and after radiotherapy must not be underestimated. Parents can re-explain
information, encourage and support their children as they go through their daily treatment with radiotherapy [13]. The parents’ own
emotional distress can be relieved by being involved in providing this information to the child and by seeing their child relaxed and
calm rather than scared and refusing radiotherapy procedures [12, 14].
Anxiety can make it difficult or impossible for children to be left alone during treatment and, as a result, sedation and anesthesia are
sometimes employed for the procedure. However, there are several advantages to radiotherapy treatment without sedation or
anesthesia [11, 15]. The unsedated child experiences decreased side-effects and fewer disturbances in daily life, especially as
regards sleep and nutrition. Furthermore, radiotherapy without anesthesia is less resource-intensive and expensive for the clinic
[11]. Psycho-educational programs [16], audiovisual interventions [17] and hypnosis [18] have all been shown to reduce the need
for anesthesia during radiotherapy for young childhood cancer patients.
Although the radiotherapy treatment process involves interactions with the most advanced technology in pediatric oncology care,
few studies have investigated the child’s and the parents’ view of this particular procedure. There are, to our knowledge, no
descriptive studies of children’s and parents’ experience of going through radiotherapy. There is also a paucity of studies in which
mothers’ and fathers’ experiences of being with their child in the radiotherapy department are captured separately. In this study, we
focus on the parents’ experience when a child who has been diagnosed with cancer undergoes radiotherapy treatment. The
children’s experience of undergoing radiotherapy will be reported elsewhere.
The aim of the study was twofold: 1) to describe parents’ experience when their child undergoes radiotherapy treatment; 2) to report
parents’ suggestions for improvements during radiotherapy for their children.
Method
Study design
The present study is the first part of a larger multicenter study aimed to improve the preparation and care environment within
pediatric radiotherapy, including three of six pediatric oncology centers in Sweden. The scope of the study is to present the current
state of the radiotherapy process. All curative cancer treatment in Sweden, including radiotherapy for children, is performed in
accordance with national guidelines and international protocols. Each childhood case scheduled for radiotherapy is discussed with
dose plans at online national rounds [19]. Accordingly, the differences in medical treatments between centers are minimized.
At each center, brief general information about radiotherapy and timing is given by physicians or nurses at the department of
pediatric oncology. Parents and child are also given a small booklet containing general information about cancer therapy. At all
centers, parents and child have the opportunity to visit the radiotherapy unit and meet the staff, as well as take a look at the
machines and treatment room some weeks before the start of radiotherapy. One center also has a “Children’s Web” on which they
can log in and have information about what happens in the radiotherapy unit and look at pictures. Detailed information about the
child’s individual radiotherapy is given at the first meeting with the radio-oncologist. This meeting is usually at the radiotherapy
department the day before or the same day as other preparations are made, such as skin marks, immobilization and CT for dose
planning. The information is usually given to the parents and child together. Staff with long experience of meeting children and
family takes care of practical information and shows the technical facilities in the treatment room, as well as the play area of the
waiting room. Before the fixation, small children are given the opportunity to play with a doll and a mask on the treatment bed in the
combined fixation/CT room. During preparations and treatments, the child is allowed to take a favorite doll or soft animal, as well as
a CD player with music or storytelling, into the treatment room. One center also offered the opportunity to watch DVDs. Parents
could be with the child during the CT assessment with the use of a lead shield. Parents always stay outside the treatment room
during irradiation, but with the option of observing their child on a screen and talking with the child. At two centers, the child can
have contact with parents via a thin rope. General anesthesia or sedation is given, if needed, to younger children. During the
treatment period, parents and child meet the radio-oncologist and pediatric oncologist once a week to discuss physical problems
and other questions about treatment or the child’s disease.
Participants and setting
For the present interview study, a stratified sample of families was used. Eighteen families with a child from 2 to 18 years old,
diagnosed with cancer and admitted to radiotherapy at one of the three pediatric oncology centers, were asked to participate in one
interview each. The sample was stratified in order to include both boys and girls and to represent the three pediatric oncology
centers.
Nine girls, median age of 10 (minimum 5, maximum 15), and nine boys, median age of 9 (minimum 3, maximum 15), and their
parents were included in the interview study.
The children were diagnosed with acute lymphatic leukemia (n = 1), brain tumor (9), sarcoma (n = 4), neuroblastoma (n = 3), and
Wilms’ tumor (n = 1). The children were receiving active treatment and they all underwent radiotherapy. No children receiving
palliative care were asked to participate.
Before radiotherapy, the children had undergone chemotherapy treatment (n = 10) and tumor surgery (n = 12). Eight of the children
had had both chemotherapy and tumor surgery before radiotherapy. During the radiotherapy treatment, nine of the children were on
chemotherapy. Additionally, three children received anesthesia and two children received sedatives. Eleven children received
radiotherapy without sedation or anesthesia.
Three parents declined participation and one parent was deceased. Interviews were performed with sixteen mothers (with a median
age of 41, minimum 26, maximum 50) and 16 fathers (with a median age of 43 years, minimum 32, maximum 57). Most of the
participants indicated that they worked fulltime (13 men and 8 women) and the other worked part-time and/or were on sick leave to
take care of their child at the time of their inclusion in the study (n = 30, 2 missing data). Two of the participants indicated that their
highest level of education was elementary school, 16 that it was high school and 11 that it was university level (n = 29, 3 missing
data).
Ethical considerations
The parents were given written and oral information about the study by a nurse at the ward when their child was admitted to the
hospital for treatment. When parents agreed to participate, their names were forwarded to the first authors (GE and CÅB), who
were able to provide further information about the study. The Regional Ethical Review Board in Umeå, Sweden approved the study
(Ref. No.: 2012-113-31M).
Data collection
The interviews were conducted by the first authors, GE and CÅB, both experienced pediatric nurses, from September 2012 to April
2014. The interviews were conducted at the end, or shortly after the end (within two months), of the child’s radiotherapy session.
The parents decided the time and place. The interviews took place at hospitals (n = 20) or were conducted by telephone (n = 12).
All interviews were audiotaped. The most common way of conducting interviews is face-to-face. Due to parents’ limited time and
long geographic distances, telephone interviews were time-efficient and yielded rich data [20]. The authors were able to establish a
rapport with the interviewees through initial contact to further explain the study, and the interviews were scheduled at a time and
place that were convenient for them. Initially, there was some small talk about everyday things to allow parents and the interviewer
to get acquainted before the interviews took place [20]. The parents were invited to speak about their experiences when their child
had undergone radiotherapy. The interviews were semi-structured and started with “Can you please tell me how things are right
now?” After that the parents were asked to describe their experiences of their child’s radiotherapy. Follow-up questions were asked,
for example “Can you please tell me more?” and “What did you feel?” The interviews lasted 13 to 45 minutes, and they were taped
and transcribed verbatim.
Analysis
A qualitative content analysis as described by Graneheim and Lundman [21] was performed on the interview data. First, all
transcribed interviews were listened to and read by the first authors, GE and CÅB, to capture the meaning and get a sense of the
material as a whole. The interview text was then divided into meaning units, each comprising sentences or phrases related to the
aim of the study. The meaning units were subsequently condensed, coded, compared and abstracted. Preliminary subcategories
and categories were formulated. The mothers’ and fathers’ interviews were first analyzed separately in order to find out whether
there were any subcategories only for either mothers or fathers; however, in each subcategory, statements from both parents
emerged. Statements are presented from both mothers and fathers in the findings. The authors discussed and reflected on
subcategories and categories, also together with the research group, and finally, the findings were formulated in terms of
subcategories and six categories. During the analysis, an overarching theme emerged. Quotations from the transcribed text are
shown in the findings [21].
Findings
The overarching theme, that of despair turning gradually into a sense of security, with a sustained focus on and close interaction
with the child, emerged. The categories and subcategories describe parents’ experience when their child undergoes radiotherapy
treatment and present their suggestions for improving radiotherapy for their children (see Table 1). The categories and
subcategories are presented below, with quotations from the interviews with both mothers (M) and fathers (F).
Table 1. Theme, category, and subcategory.

https://doi.org/10.1371/journal.pone.0141086.t001
Cancer and cancer treatment turn life upside down and affect the entire family
Experiencing shock and overwhelming feelings.
When a child has been diagnosed with cancer and has to undergo radiotherapy, parents experience shock and chaos and have to
come to terms with the fact of a life-threatening illness. The feeling can be described like this: “Everything has been difficult, and the
most difficult part was to digest everything—that your child is seriously ill” (0310M). Parents can experience overwhelming feelings
like feeling sick and mentally exhausted, as well as uncertainty, distress and fear of the illness and the radiotherapy treatment: “Oh,
it’s so terribly difficult, you’re so sad and so extremely worried and afraid” (0103M). They feel that everything concerning the
disease and treatment is happening so fast that they cannot absorb the information or understand what is happening.
Being anxious about the child’s health and survival.
Parents state that it is difficult to watch how sick the child becomes due to surgery and/or chemotherapy, and radiotherapy. Some
parents report that they were prepared for their child’s radiotherapy, while others state that they are not, and that they thought the
treatment would be completed with surgery and/or chemotherapy: “It was really hard, because I thought everything was done since
the tumor had been removed in the operation” (0303M). All of the parents also express their fear of late effects from the
radiotherapy, for example, impaired memory, damage to parts of the brain and/or the body, and mental changes. Many of them
describe how they try to be positive in front of their children, but deep inside they have questions about the child’s survival and say
that they are willing to let the child undergo any treatment as long as it will result in a cure. Some of them describe worries about
the future: “…a little worried that it could affect the brain…my child’s future. Obviously you worry when there’s radiation involved
[pauses]…that it could affect the brain, the memory, and things like that” (0205F).
Dealing with practical issues and sharing responsibility.
A child’s illness affects the entire family. Parents must deal with many different practical issues regarding staying at the hospital
when their child has treatment. They miss their home, their family and friends. They have to make arrangements for themselves
and their family. They are trying to manage everyday life for the entire family. “Nowadays we don’t live together, but we’ve been
together as much as possible at any rate, but not the entire time…we have two other children, so…we’ve made sure they can be
wherever suits them best” (0310F). Parents often share responsibilities with each other, each one staying for a few days or a week
at the hospital with the child and the next week staying at home taking care of their other children and work at home. Parents state
that their ill child comes first, and they gradually learn how to be a parent of a sick child.
Receiving emotional and practical support from family, relatives, friends, coworkers and staff.
A lot of the families stay at hospitals far from home. Parents emphasize that the time they can spend together at home as a family
and the support they receive from each other in the family are essential. They describe the practical support they receive from
grandparents looking after siblings and helping with emotional and practical support. Other sources of support mentioned are other
people close to the family, such as relatives and friends. Coworkers and employers are described in positive terms, and their
support is of great significance: “Oh, I have an amazing employer and coworkers. They’ve all said ‛Forget about us, drop by and
have coffee with us whenever you want…you’ve got another job now” (0202M). Parents also feel supported by “the wonderful
hospital staff” (0302M), social workers, teachers and parents of other children at the ward.
According to parents, their children get support from their siblings: “They [the older siblings] are pretty close–they do things
together, try to cheer up and stay in close contact, they have the same interests” (0202M). Friends, schoolmates and teachers
seem to play a significant role. The staff at the hospital school, as well as the play therapy unit, plays an important role in supporting
children while they are sick.
Radiotherapy includes experiencing the child’s suffering
Experiencing the child’s physical symptoms.
Children undergoing radiotherapy treatment suffer from physical symptoms. The parents comment, for example, on nausea,
diarrhea, headache, poor appetite, hair loss, fatigue and burns. They describe the physical changes they see in their children: “It’s
like it’s not her body, you might say…The tiny, tiny feet just cannot support her weight” (0205M). Most parents describe various
side-effects of the radiotherapy, and they also explain that the child can experience sensations: “He see lights flashing in his head
when he gets radiation, and it makes a bad odor, an odor that isn’t in the room, of course; it’s his brain that brings it on” (0101F).
Experiencing the child’s emotional distress and endurance.
Parents find the radiotherapy treatment difficult, depending on their child’s reactions. Young children are generally anesthetized or
sedated, while older ones are conscious. For some of them, the radiotherapy session goes well: they return to consciousness and it
is done. For others, however, it can be very difficult. Although they are sedated, they may be very frightened and anxious: “Oh, he
was afraid someone would put a needle into him, or that it would hurt. Even if we explained to him that …it won’t hurt” (0309M).
To expose one’s child to radiotherapy each day is described as “torture” (0101M). “He doesn’t like the radiation…not fun…he gets
strapped into place, you know…he thinks being strapped down is so uncomfortable…the radiation is so incredibly awful that he
can’t listen to the music after because he makes him remember it” (0101F). Parents find it very hard to stand beside and observe
the child’s reactions: “[whispers] Yeah, the hardest thing [sobbing while speaking]…It’s seeing that she can’t stand it. That’s the
worst thing…It’s mainly the mask–it makes her panic…” (0201M). Many parents comment on difficulties with the mask: “She gets
caged inside a mask that is then strapped to a table. She can’t move at all. She’s had such terrifying visions, like that she was going
to fall off the table, and her head would stay on the table but her neck would be broken” (0106M). Other things that affect the
experience of the radiotherapy session is that making the adjustments takes time and entails discomfort: “Being stuck there for
about an hour, fighting with the mask, trying to get it right, she finds it’s so awful. And it’s stuck onto her, you know. That was
probably the hardest part” (0201F). Parents of smaller children who not are able to express themselves in words observe their
children and try to understand the child’s feelings: “Sometimes I ask myself what she can be thinking? What is she feeling? She is
so young…and she’s gone through so much” (0310M).
Radiotherapy includes experiencing intense feelings
Being close to the child and sharing similar feelings.
Parents describe how they have to put everything else in life aside during treatment in order to be close to and concentrate on their
child and treatment. “It’s extremely surreal—you become very close to each other when you have to stop and put everything else in
your life aside” (0103M). The child’s mood and condition influence the parents’ condition. If the child’s reactions to the hospital stay
and treatment are positive, parents feel relief: “When I felt my child was relaxed and feeling good after a few times, I too was able to
relax a bit…I felt a little relieved too” (0310M). Parents’ and children’s feelings are intermeshed: “How hard it is for her is reflected in
how smoothly things go for us too” (0102F). When the child is afraid, sad and experiencing difficult symptoms, parents describe
feeling down.
Feeling they are abandoning the child during the procedure.
Parents describe that the child must lie still and be left alone in the treatment room during radiotherapy. While the child, if a younger
child, is sedated or asleep, parents’ still feel it is difficult to leave the child: “The anesthetic is working fine, but it’s hard to leave
one’s child alone behind the steel doors…it feels horrible to leave one’s little three-year-old there” (0303M). The parents describe
having many feelings during the procedure, such as worry, anxiety, distress and being in a vulnerable situation where they have to
trust others: “…there is always worry. There is a risk with anesthesia, so it’s not a good feeling…to leave the room and see her
unconscious” (0310F).
Radiotherapy includes preparation by skilled and empathetic staff
Experiencing staff having time and taking time to provide individualized information and guidance.
Parents report that the staff at the radiotherapy unit invited them and their children for a visit, at which they received information,
asked questions, were told about what was going to happen checked out the treatment room and the equipment, and met the staff.
Some children have to wear a mask during radiotherapy, and for some children, make construction and trying on the mask is a
stressful, unpleasant experience: “First a visit prior…you meet the people and, and the material [the mask], they let her try it on… it
gets pretty hot on the face so she was allowed to take it home and practice a bit, or play around with it to become used to it. So
they were really great. Then we made a mask for her favorite stuffed animal, too” (0315F). Parents report that they have recurring
questions about radiotherapy–for example, concerns about side-effects, nausea, fatigue, and late effects. Parents find it easy to ask
questions and communicate with staff, and they often have the opportunity to do so while the child is getting treatment. However,
some parents find the information inadequate. They ask for more information, find that what it provided is incomplete, and they want
someone they can turn to when questions arise. Parents mention that their children also have questions concerning radiotherapy: “I
want to mention that, and he [the child] has wondered about it—what kind of radiation is it? Radiation is dangerous: you can get
cancer from radiation. Why do you not get cancer from this radiation?” (0103M).
Experiencing having confidence in the staff.
Almost all parents report that they and their children have confidence in the staff: “I think that has worked really well and I think he
has felt safe and secure–he hasn’t been particularly anxious at all” (0103F). According to parents, seeing the same staff each time
can build confidence. Parents report that the staff know and prepare the kind of preparation each child prefers. Staff and the
children and their parents get to know each other, and the staff adjusts details during the radiotherapy session in accordance with
the child’s and parents’ wishes: “They took note of certain things. Because she didn’t want to have this kind of paper [on the
hospital bed], she had to have a sheet…Then she wants it to be silent when she puts the mask on–they shouldn’t be talking”
(0201M). Almost all parents mention the staff’s responsiveness to the child and their interest in getting to know the child.
Experiencing staff showing various degrees of empathy, and consideration and taking good care.
Parents describe that they are satisfied with the care of their child and themselves. The staff is described as empathetic, thoughtful
and respectful, and they take good care of their child. “When they get him in the waiting room, you get a feeling that he is the only
patient they have all day…If staff can get all their patients to feel like the only one and the most important person throughout the
day, there’s such a strong focus on him, it’s a really, really great feeling” (0101M). The staff also shows interest in the children and
tries to see each child as an individual.
The staff’s thoughtfulness and efforts vis-à-vis the children are seen in, the details of their interactions with the children: This is
described by the parents: “They asked if there was anything special he would like. They had marbles, and he decided he wanted to
start collecting them, so now he gets a marble every time he has radiation” (0203M). Some parents describe that their children
have a favorite member of the staff. They can give five extra minutes time to talk to, care for and become personally involved–for
example, offering to bring a CD from home. Parents also describe that the staff try to do their very best for the child: “Then there are
some staff who are a cut above, I guess I could say. They’re all good, but some are fantastic. Some who just go that extra mile, tuck
him in a little more nicely, place the teddy bear right in beside him, give him a hug, so you feel they give that little bit extra” (0302M).
Many parents describe being well taken care of and that they appreciate when staff can be in command, take over and make
suggestions for how to solve problems that arise and thereby relieve parents when they do not have the strength.
Radiotherapy includes the experiences of gradually learning to cope with the process
Experiencing getting used to the process over time.
Parents say they get used to radiation therapy over time and can more easily cope with the situation. They adjust to the procedure,
know what will happen, feel safer and understand how their child reacts: “[She]’s gotten used to the situation, but the people around
her have also gotten used to it…they sort of understand the state of things” (0201F). Parents describe how some children feel
better in the end, with fewer side-effects and symptoms, and some children even need less sedation because they have become
accustomed to radiotherapy.
Finding facilitating routines and coping strategies.
Planning each day and solving problems by finding routines that suit both the child and family life are essential: “A clear structure to
tell me what I should do next…thinking up lots of fun tricks. Then we make sure we do them every time…the ball of yarn under the
door, so we have a kind of connection, she gets to wear Mommy’s sweater, we play the right CD, have the right color on the ceiling
using these bubbles…so she will feel at home” (0201F). They stay at the hospital or at home, and point out that they appreciate
being able to request time for the radiation therapy. Planning activities of different kinds and entertainment after the radiotherapy
helps the child get through treatment. Some parents describe that they set goals or plan activities to look forward to, such as a trip,
go to a movie or other activities.
Children who are awake during the radiotherapy use a variety of distraction activities during their treatment and, for example, have
their stuffed toys and listen to music or a story, or watch a film. Some children use positive thinking: “He actually thought of that
himself when in the sitting radiation. He often thinks about graffiti and hockey—things that interest him” (0102M). Self-talk or having
a quiet time, holding a string between child and parent, and having massage before treatment are practiced. Smaller children
appreciate receiving a gift after radiotherapy as a positive reward: “He knows there are 30 radiation treatments, and he always gets
to choose something [as a reward], so because there are 30 students in his class, he has decided to take one item every day. This
is something he looks forward to and plans what he’s going to give each person” (0101M).
All parents comment that they know radiotherapy has to be done. They describe using acceptance and emotional detachment as
coping strategies: “Somehow, you just shut it out…of course, sometimes you’re thinking ‛Golly, time for the radiation–it’s for real
now” (0209M). Descriptions about avoiding thinking and talking about radiotherapy occur among the children: “The child doesn’t
want us to talk about the radiation…doesn’t want to hear anything about the radiation…wants to shut it out of her thoughts as much
as possible” (0101F), while others seem to accept the procedure and the situation.
Parents’ suggestions for improvements during radiotherapy
Requesting concrete, repeated information.
Parents express their need for information from physicians and the staff at the radiotherapy unit. They want to have repeated
information about their child’s treatment, as questions arise during treatment and they want to understand what is happening:
“Seeing the image from the radiation–how large a wound it produces and a little about what zone is irradiated, and so on. So you
can kind of know what happens. Plus, maybe get a better explanation of what the radiation entails and what it does—what happens
to all the cells” (0106F) The parents think it is important that both of them receive the same information. They recommend that other
parents and children visit the treatment room to try out the equipment and meet the staff before the treatment starts. Parents
suggest that their children be informed by means of an age-appropriate film, by using pictures and ensuring that their children get
information about all possible side-effects. Making and testing the mask is mentioned as being problematic, and product
development of the mask is suggested.
Needing individualized distractions and a well thought-out procedure.
According to parents, suitable distractions for their children during treatment include watching a video, listening to a story told by
the parent using headphones, having stuffed animals with them in the treatment room, and involving and using parents in
distractions: “Find out, with the help of the child, ‘What might help make this less difficult for you?’ You can get storytelling on CDs,
there’s music… I believe all kids have something …that makes difficult experiences more bearable for them” (0101M). Parents want
a well thought-out, individualized procedure with no waiting time that is adapted to each child’s capabilities, limitations and needs in
order to facilitate the treatment of the children.
Needing routines and everyday life.
Parents report that they can make the radiotherapy treatment easier by finding routines for themselves and their child, whether they
live at home or stay at the hospital. Their usual everyday life is of great importance when life is turned upside down and they want
to continue their familiar routines. Parents appreciate living at home or close to the hospital and having their family nearby: “We had
the benefit of being able to borrow one of the childhood cancer foundation’s apartments. That has been incredibly significant—it’s a
little like a home. We can be together…make our own meals…we try to have a kind of summer vacation ever so often” (0106M).
They also need to be able to engage in appropriate activities alongside radiotherapy to sustain them so that they will be up to their
everyday obligations. They appreciate being able to have radiotherapy treatment at a time they decide themselves, as this eases
the making of the arrangements and the organization of life for the child and the whole family. It is of great significance that their
children can continue to go to school and visit the play therapy unit.
Requesting child-friendly and family-friendly staff in a child-friendly environment.
Parents mention the importance of the staff’s having a welcoming manner and taking good care of both parents and children.
Parents require child-friendly staff who understands the importance of adjusting language and care to the child’s age and are not in
a hurry. They want the staff to be aware that preparing and adjusting the child’s position can take more time than expected. When
suggesting improvements, parents return to how essential it is to have confidence in the staff: “But the most important thing is to
feel confidence in the people you deal with–you’d like to advise them [other parents] to basically believe what the doctors say…
they’ve told you, ‘We’re telling you everything we know,’ and that lets you let go of a lot of other worry…” (0103F). Furthermore,
parents suggest child-friendly waiting rooms, with furniture and environments adjusted to children of different ages, in cheerful
colors. They also suggest having more toys, games and books available for their children.
Parents describe how small gifts, such as marbles pencils or a toy, suitable for both girls and boys, given after each radiotherapy
session, could make treatment easier for their children and help them to look forward to the next treatment.
Discussion
The overarching theme, which synthesizes parents’ experience when their child underwent radiotherapy, was that despair turns
gradually into a sense of security, with a steady focus on and interaction with the child. Parents described how the cancer and the
cancer treatment turned their lives upside down and affected the entire family. Further, for the parents, radiotherapy included
receiving patient preparation by skilled, empathetic staff, experiencing their child’s suffering, experiencing intense feelings, and
learning gradually to cope with the process. Finally, parents’ suggestions of possible improvements during radiotherapy were
described.
The findings reveal that children’s cancer diagnosis and treatment are stressful to the entire family. This is in line with earlier
publications [4–6]. Post-traumatic stress symptoms have also been reported [22, 23]. The illness is often interpreted as life-
threatening, expressed in the present study by the parents’ anxiety about the child’s survival, which is supported by other authors
[4, 5]. This fact could potentially affect their own stability, and they describe benefiting from the support of healthcare staff and close
friends. The need for support is well-described by others [8, 9]. Practical issues need to be resolved; including transportation to the
hospital or how to take care of siblings. Otherwise the burden on the parents may prove excessive as the ill child needs comfort
and care. It appears that most families in the present study shared the responsibility for their ill child and for the rest of the family. In
Sweden, both parents can obtain sick leave, which may facilitate their sharing of the responsibility. If the family lived far away, being
able to stay in an apartment instead of at the hospital was appreciated.
It is essential that radiotherapy be preceded by preparation of the family by skilled, empathetic staff, as proposed by parents. The
information provided and the start of therapy influence how well the program overall will turn out. Every child is unique and has to
be treated individually, as described by parents in the present study, and a feeling of confidence arises. Unfortunately stressed-out
staff may, as described by a parent, affect collaboration and the success of the treatment procedure. It can be a challenge when on
a tight schedule to interact with children and parents while maintaining a respectful approach to the child. Sometimes anesthesia
has to be given to preschool children in order to ensure a correct, precise position during treatment. Preschool children are also
able to cooperate if they are given time and appropriate emotional preparation, and studies in radiation settings show that it is
possible. Parents of children undergoing MRIs received preparation and information about the examination [24]. Age-appropriate
preparation, distractions and good communication between family and staff can make it possible for the children to undergo the
examination without receiving anesthesia [24].
Parents described experiencing their child’s suffering of symptoms, emotional distress and endurance. The treatment and side-
effects were sometimes very distressing, according to the parents. Pöder, Ljungman and von Essen found an association between
parents’ ratings of their children’s symptom burden and their own emotional distress [25]. Studies described an association between
mothers’ and fathers’ ratings of their child’s symptom burden [25, 26]. They indicate that parents have similar experiences and that
both mothers and fathers are close to their child. In this study, the findings reveal that parents are closely connected with their
children, and that they suffer both from their own experiences and from seeing their child suffer, as has also been reported in other
studies [7, 27].
Parents experience that they have to leave the child alone in the treatment room and be separated. Feelings of anxiety when
abandoning a child may occur and can be understood from the perspective of the Attachment Theory by Bowlby [28]. Healthcare
staff may help parents be aware of this process, and may need further training for supporting parents in these situations. If the child
reacts with anxiety, it may be more difficult to leave the child alone in the treatment room. Therefore it is necessary to find ways to
make younger children feel secure by using age-appropriate information and parental closeness in other ways—for example,
through a string or the parent’s voice through an intercom.
Although radiotherapy is a stressful treatment, the parents described gradually becoming accustomed to the process through the
support they received from staff in the treatment room, how well the child manages the treatment, and the coping strategies
described by the parents. A range of strategies are described: they find an everyday routine and structure, and that helps. Finding a
goal and having activities suitable for the entire family are other strategies. Healthcare staff at the oncology ward, including staff at
the hospital school, and play therapy may also help families find suitable routines. Coping strategies and adjustment, described in
the present study, to the cancer diagnosis and treatment are in line with other authors’ findings [29]. What exactly helped the
parents in this process requires further investigation.
Parents have suggestions for possible improvements during radiotherapy. They requested repeated information, which is also
supported by previous reports [5]. A concrete, individualized approach from the staff can contribute to a well-functioning process.
The visit to the radiotherapy ward was essential for the parents, as was finding a form of distraction that suited the individual child.
New technology could be used to enhance the distraction. The environment is a factor that needs to be enhanced to make children
less frightened and more comfortable. Parents, in expressing the desire for child-friendly staff, refer to examples showing that it is
already a reality, even though it sometimes fails. To reach a family-friendly approach according to pediatric family-centered care
could be an option [30].
While some of the insights gained from the interviews concern the direct experience, others point more directly to areas for
improvement within the current treatment experience of both parents and their children. Indeed, parents propose various ways in
which the process could be improved. While the purpose of this paper has been only to report our findings from our interviews with
parents within the multicenter study, these insights will be combined with this study’s additional research into children’s and families’
needs during pediatric radiotherapy and synthesized into key opportunities for innovation in the radiotherapy treatment experience,
using a human-centered design approach [31]. Our next steps will be to take our insights and turn them, in collaboration with a
team of designers, into actionable interventional changes in the radiotherapy treatment process.
Methodological considerations
To ensure the credibility of the study, parents of both genders, various ages and types of experiences of childhood cancer
contributed their perspectives [21]. During the analysis, the authors moved back and forth in the research process, discussed data
collection, analysis, interpretation and literature, and reflected upon the findings. [21]. Interviewing was an appropriate way to
gather data and gave rich descriptions of the parents’ experience during radiotherapy and suggestions for improvement [21, 32].
The dialog during the interviews was free and unstructured, and parents were encouraged to share their experience through follow-
up questions. Many parents said it felt good to share their story so that they might be able to help other parents in a similar
situation, and they also pointed out that they needed more time to talk about their situation. According to Trier-Bieniek [33],
telephone interviews can produce honest discussions and rich data and make it easy to talk because of the anonymity. On the other
hand, the lack of body language and visual cues is a disadvantage. The authors listened attentively to the participants and were
prepared to interrupt the interview if there were signs of crying or upset feelings. Some parents reacted with crying and said they
felt moved during the interview, but no one needed extended support after the interview. As the parents were interested in taking
part in the study, we regard the data as trustworthy.
The study contributes to our understanding of parents’ experience when their child is undergoing radiotherapy treatment. Some
strengths and limitations of the study should be noted. We have interviewed both mothers and fathers in the study. The joint authors
(GE, CÅB) analyzed the interviews of mothers and fathers separately. Statements from both genders occurred in each subcategory.
This indicates that in Sweden the experience of mothers and fathers is similar. Separating the findings would not have yielded any
further information; however, any gender differences may be easier to find in quantitative studies. The interviews with parents were
conducted at the end of the radiotherapy treatment, which could be seen as a limitation. On the other hand, parents had an
overview of the entire process from start to finish; moreover, the interviews with parents produced valuable data that support the
present design.
We have not mentioned the ages of the children in the findings, as the parents’ experience does not always depend on the child’s
age; rather, it is related to the child’s illness, treatment, side-effects and suffering. The findings can be transferred to other pediatric
cancer centers in Sweden. Whether they are transferable to a broader context, we will leave to the reader to determine.
Conclusion
Parents described a heavy burden before and around the start of radiotherapy. The overarching theme, based on the findings, that
despair turns gradually into a sense of security, with a steady focus on and close interaction with the child, indicates that the
parents learned gradually to cope with the radiotherapy process as the child got used to treatment and accepted the process, as
well as the physical and psychological suffering. Further development of age-appropriate information and distractions were
requested. Possibly, a systematic strategy for psychological preparation and training among radiotherapy staff to develop a family-
friendly approach according to family-centered care could be an option to further develop the care of children and their families
during the radiotherapy process.
Acknowledgments
The authors would like to thank all parents who participated in the study and so generously shared their experiences. We are
grateful to all staff at the radiotherapy departments and the pediatric oncology centers who helped us inform parents and children
and collect data for the study.
Author Contributions
Analyzed the data: CÅB GE. Wrote the paper: CÅB GE TM KN GWJ AMS TN JL VL. Discussed, participated and agreed to
analysis: CÅB GE TM KN GWJ AMS TN JL VL.
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20/12/2023, 14:26 Parents’ Experiences and Responses to an Intervention for Psychological Preparation of Children and Families During the C…
Journal of Pediatric Oncology Nursing

Volume 35, Issue 2, March/April 2018, Pages 132-148
© 2017 by Association of Pediatric Hematology/Oncology Nurses, Article Reuse Guidelines
https://doi-org.ez18.periodicos.capes.gov.br/10.1177/1043454217741876
Research
Parents’ Experiences and Responses to an Intervention for

Psychological Preparation of Children and Families During the
Child’s Radiotherapy
Charlotte Ångström-Brännström, PhD 1,*, Viveca Lindh, PhD 1,*, Tara Mullaney, PhD 2, Kristina
Nilsson, MD, PhD 3, Gun Wickart-Johansson, MD 4, Anna-Maja Svärd, MD 1, Tufve Nyholm, PhD 1,
Jack Lindh, PhD 1, and Gunn Engvall, PhD 5
Abstract
The aim of this study was to evaluate parents’ experiences and responses to a systematic intervention for
psychological preparation of children and families during the child’s radiotherapy (RT) treatment. In this
case-control study at 3 pediatric RT centers, an intervention with a preparatory kit, including age-adjusted
information on tablets, gift of a stuffed toy or a pair of headphones, a parent booklet, and toy models of the
computed tomography and RT machines was implemented. For evaluation, a mixed methods data collection
was conducted. A total of 113 parents of children undergoing RT were included—n = 59 in the baseline
group and n = 54 in the intervention group. Health-related quality of life was rated low, but parents in the
intervention group expressed less anxiety after the RT compared with the baseline group. They found
information suitable for their young children, siblings, and friends were involved and the toy models were
used for play. Parents expressed positive feelings due to close interaction with staff and each other within the
family. The solutions developed within a human-centered design approach and shaped as a systematic
family-centered strategy contributed to parents understanding and coping with the child’s RT.
Keywords
child, childhood cancer, intervention, radiotherapy, parent
1 Umeå University, Umeå, Sweden

2 Veryday, Stockholm, Sweden
3 Uppsala University Hospital, Uppsala, Sweden
4 Karolinska University Hospital, Stockholm, Sweden
5 Uppsala University, Uppsala, Sweden
Corresponding author(s):
Charlotte Ångström-Brännström, PhD, Department of Nursing, Umeå University, Umeå 906 42, Sweden. Email:
charlotte.angstrom@umu.se
* Charlotte Ångström-Brännström and Viveca Lindh and are joint first authors.
Introduction and Review of the Literature

Children with cancer often undergo a long treatment, including chemotherapy, surgery, and radiotherapy
(RT). The children suffer from the treatment and side effects and the whole family is affected (Flury,
Caflisch, Ullmann-Bremi, & Spichiger, 2011; Houtrow, Yock, Delahaye, & Kuhlthau, 2012; Woodgate,
https://journals-sagepub-com.ez18.periodicos.capes.gov.br/doi/epub/10.1177/1043454217741876 1/22
2008). RT is commonly used to treat children with cancer. To control the child’s motion during treatment, a
stabilization device or mask is used and sometimes they are strapped to the treatment bed. General
anesthesia is used for the youngest children. The children meet with new staff in an unfamiliar environment
and during treatment they must stay alone in the treatment room. The RT treatment is described as
challenging and many children younger than 7 years require sedation or anesthesia (Bucholtz, 1994; Filin,
Treisman, & Peles Bortz, 2009; Haeberli et al., 2008; Willis & Barry, 2010). The treatment often causes
stress and fear for both children and parents (Engvall et al., 2016; Filin et al., 2009; Ångström-Brännström et
al., 2015). Parents of children undergoing RT further describe their child’s emotional distress, endurance and
physical suffering, the experience of abandoning their child, and how they gradually are getting used to and
coping with the process over time with the help of the staff’s preparation and guidance (Ångström-
Brännström et al., 2015).
There are some studies describing interventions that aim to decrease children’s anxiety and distress
during RT treatment: giving children age-appropriate information about RT (Filin et al., 2009; Haeberli et
al., 2008; Scott, Langton, & O’Donoghue, 2002), visiting the RT unit and practicing the procedure (Filin et
al., 2009; Haeberli et al., 2008), getting familiar with staff, equipment, and procedure (Willis & Barry, 2010),
art/play therapy/programs (Filin et al., 2009; Jacques, Udowicz, Bayliss, & Jensen, 2014; Scott et al., 2002),
interactive educational video, and an interactive character playing and singing (Klosky et al., 2007),
audiovisual aids, for example, cartoons, tablets, devices (Jacques et al., 2014), movies or DVDs (Willis &
Barry, 2010), toys and games (Haeberli et al., 2008; Klosky et al., 2007), pictures, and books (Haeberli et al.,
2008). A relaxed and friendly atmosphere that invites parents and children to visit the radiotherapy unit can
facilitate development of relationships with the staff (Scott et al., 2002). These interventions are mainly
evaluated in terms of reduced need for sedation and/or anesthesia and that children were able to undergo
radiotherapy treatment awake if they received age-appropriate preparation and distraction.
Parental participation during RT is encouraged (Scott et al., 2002). Parents know their children best and
can take an active part in preparing and informing their child before treatment, and by doing that their own
distress can be eased. Gårdling, Edwinson Månsson, Törnqvist, and Hallström (2015) found that nurses
described parents as being less anxious when being informed about the procedure and when seen as
resources and involved in their child’s care and RT treatment. Both parents and children in pediatric medical
imaging procedures can benefit from being educated and empowered by play therapists and the authors
conclude the importance of being aware of each family’s specific needs and capacities (Delany & Conwell,
2012). Klosky et al. (2007) found in their intervention study a reduced parental anxiety, otherwise few
studies describe parents’ experiences and responses when their child undergoes RT treatment.
To summarize, various interventions in pediatric RT treatment including play/art therapy, education,
information, visiting the RT unit, audiovisual media, and parents’ presence can decrease fear and anxiety in
both children and parents, and reduce the need for sedation and anesthesia. Although there are some single
interventions that have been created to reduce anxiety and stress for children undergoing RT, there is lack of
systematic psychological preparation and distraction strategies involving both the child and their family.
Therefore, we worked with design researchers at the Umeå Institute of Design to create a cohesive strategy
where technique, design, and care professionals would work in synergy to help both children and their
parents to prepare for and cope with the RT procedure. Human-centered design (HCD) is well known for its
emphasis on understanding human needs and developing designs that can respond to these needs. HCD
processes start with studying humans to understand their hopes, fears, and needs, to uncover what is needed
and wanted. It then focuses on creating solutions that are desirable, feasible, and viable (IDEO.org, 2015).
Previous research has argued that HCD approaches can successfully be used to develop RT interventions
focused on improving the patient experience (Mullaney, Nyholm, & Edvardsson, 2011; Mullaney,
Pettersson, Nyholm, & Stolterman, 2012). Parents’ overall experiences when their child undergoes RT
treatment has already been described by Ångström-Brännström et al. (2015), though few studies have
investigated parents’ experiences of specific interventions used during their child’s RT, and none in a
Scandinavian context. Thus, the aim of this study was to evaluate parents’ experiences and responses to a
systematic intervention for psychological preparation of children and families during the child’s RT
treatment.
Methods
Procedures and Data Collection
All 6 pediatric RT centers in Sweden were invited to join the study and 3 centers consented to participate.
The study was designed as an unmatched case-control study with an initial baseline period (controls)
followed by an implementation and evaluation of a designed intervention (cases) (see flow sheet, Figure 1).
Figure 1. Flow sheet (A) Overview. (B) Baseline and intervention.
The baseline period started in September 2012 and data sampling in the baseline group was completed in
January 2014. The intervention was implemented in February 2014 and data sampling in the intervention
group was completed in June 2015. Students at the Institute of Design at Umeå University, Sweden created
the intervention during spring 2013 and the ideas were realized and tested during summer and fall 2013.
During the baseline period the established routines for preparation and distraction of children during the
RT process at each center remained unchanged but differed somewhat between centers (Engvall et al., 2016).
Parallel with the baseline study period, the design students created and realized an intervention for
psychological preparation and distraction for children and their families during the child’s RT process. The
intervention was then implemented at the 3 RT centers and the intervention was evaluated.
A mixed methods research design was used. The analytic approach was parallel, that is, the collection
and analysis of both data sets were carried out separately and then integrated (Cresswell, 2013).
The parents in the baseline and intervention groups completed the PedsQL 2.0 Family Impact Module
(PedsQL FIM) (Varni, Burwinkle, & Katz, 2004) at 3 evaluation points during their child’s RT process: at
inclusion in the study after RT decision, at the computed tomography (CT) and fixation before RT, and when
the RT was completed. The parents rated their perceived anxiety with a visual analogue scale for anxiety
(VAS-A) (Rossi & Pourtois, 2012) at the same evaluation points as above and also a fourth evaluation at the
start of RT. Interviews were performed within 3 months after the RT was completed (Figure 1).
Participants and Settings

A stratified sample of children and adolescents and their parents was used. Fifty-seven families with a child
from 2 to 18 years old diagnosed with cancer and admitted to RT at 1 of the 3 pediatric oncology centers
were included (Table 1). The sample was stratified according to age and gender of the children and to
represent the three pediatric oncology centers in the baseline and intervention groups. Part of the sample was
also stratified for parents and child interviews after RT in the baseline and intervention groups. Inclusion
criteria for the intervention group was that the child should be scheduled at least five days after inclusion for
fixation followed by a planning CT in order to have time to go through the preparation material.
There were no significant differences between the baseline group and the intervention group concerning age,
gender, parents’ education, work situation (extent), number and age of siblings, and if the child was living
with both or 1 parent.
The children in the baseline group were diagnosed with acute lymphoblastic leukemia (ALL) (n = 1),
different central nervous system (CNS) tumors (n = 14), sarcomas (n = 6), neuroblastomas (n = 5),
Hodgkin’s disease (n = 3), and Wilms’ tumor (n = 1).
The children in the intervention group were diagnosed with different CNS tumors (n = 13), sarcomas (n =
6), neuroblastomas (n = 4), Wilms’ tumor (n = 3), and Hodgkin’s disease (n=1).
All children received treatment according to national or international study protocols used for the
different diagnoses, or if protocols were unavailable, according to national recommendations/guidelines. All
children underwent RT and fulfilled planned treatment schedules according to protocol. Children receiving
palliative care were not approached for the study.
The children in the baseline group received chemotherapy before RT (n = 17), during RT (n = 12) and
after RT (n = 12), and in the intervention group: before RT (n = 19), during RT (n = 11), and after RT (n =
15). Fifteen children in the baseline group and 13 in the intervention group went through surgery before RT.
There were no statistical differences in number of children who received chemotherapy treatment and/or
surgery before and during RT between the baseline group and the intervention group.
The Intervention
The overall design goal of the intervention was to create technical tools that could help both children (aged
2-18 years) and their parents to prepare for and cope with radiation treatment. The students from Umeå
Institute of Design used a HCD process to develop the intervention, where they conducted research to
understand the needs and experience of the children and parents undergoing RT. HCD involves the use of an
iterative design process, which considers the overall user experience and involves the users in the
development and evaluation of the design to create products, systems, and services that are physically,
perceptually, cognitively, and emotionally intuitive (Giacomin, 2014).
The design students conducted ethnographic fieldwork at the 3 clinical sites, and used this material in
combination with the raw interview data provided by the researchers to gain insight into the pediatric RT
experience from multiple perspectives. They then analyzed this material using a variety of service design
approaches to map out their findings, narrowing down the learning into key themes and insights (Stickdorn
& Schneider, 2010). They generated ideas about possible design solutions, working directly with the RT
clinical staff to ensure that the designs were realistic and feasible. Based on these conversations, 4 guiding
principles for the intervention were developed. It must be technologically simple and secure, require little to
no additional work for the staff to implement, emphasize parent involvement, and acknowledge the differing
information needs of young children and teenagers. Taking the final principle into consideration, the
designers decided that there was a need to develop 2 different versions of the intervention in order to provide
age-appropriate material to the entire age range of children involved in the project (Mullaney, 2016).
The intervention was in 2 parts: HUGO for Kids for children aged 2 to 12 years and HUGO for Teens for
children aged 12 to 18 years. Overall, the HUGO intervention consisted of a preparatory kit that was
designed to be distributed to children before they started RT treatment, containing age-appropriate
information about RT treatment and what to expect. The kit contained a tablet, a Parent Booklet that
provided important information to the parents about the ways they could participate and help with their
child’s RT process, and a gift for the child. The tablet was installed with specially developed HUGO
applications, and could also be used in combination with video goggles in the treatment room so that the
children could watch movies or listen to their favorite music while they received RT (Figure 2).
Figure 2. HUGO for Kids and HUGO for Teens applications.
The HUGO for Kids application contained a series of digital stories, animations, and preparatory exercises
for the child to do at home with their parents to help them understand and prepare for their RT treatments.
All these stories revolved around the main character, Hugo the elephant, who had experienced radiotherapy
treatment himself for a lump in his head. In the stories, Hugo describes what it is like to go through RT and
shows what happens step-by-step in the simulation appointment and the treatment appointments, including
the sounds that the machines make. Hugo acts as a guide for the child, both within the app and also in
physical form, represented by the stuffed elephant provided in the kit. Play therapy toys were also installed
within the waiting rooms of the participating RT departments, which the child could use to play out their RT
experiences with the stuffed elephant in a safe and supportive environment. These toys were interactive
small-scale versions of the CT and RT machines, and fixation devices (Figure 3).
Figure 3. Toy models of the computed tomography (CT) and radiotherapy (RT) machines.
The HUGO for Teens application served as a platform for sharing information. It compiled a variety of
existing relevant information about RT and its effects (books, magazine articles, videos, web sites) and
provided it all in one place so the teenagers did not have to go looking for the information themselves.
Additionally, the teenagers could load movies and music onto the tablet, allowing them to watch and listen to
whatever they wanted during their treatments. The HUGO for Teens version of the kit included a pair of
headphones, which enabled the teens to review the content on their tablet with privacy if they wanted to.
While the Kid and Teen kits were packaged separately, both applications were installed on all the kit
tablets so that children who did not quite fit strongly into one age group or the other could draw on the
material from both. In HUGO for Kids and Teens there was an opportunity to collect stickers after each RT.
The applications were developed in Swedish and English in order to be useful for the majority of the
patients being seen at the participating hospitals. The child and the parent(s) were introduced to the HUGO
material by a nurse at the RT department at least 5 days before the start of the RT procedure, thus having
enough time for preparing at home before RT start.
Measures
Primary outcome measures were parent’s anxiety, parent’s quality of life, and parent’s view of the care and
care environment.
Health-Related Quality of Life (HRQOL). PedsQL 2.0 Family Impact Module is a 36-item parent-report
instrument designed to assess the impact of children’s illness on parents and the family (Varni et al., 2004).
The scale includes the following subscales: Physical Functioning, Emotional Functioning, Social
Functioning, Cognitive Functioning, Communication, Worry, Daily Activities and Family Relationships. The
scale has 5 Likert-like response options: “never,” “almost never,” “sometimes,” “often,” and “almost
always.” The scores are then transformed to a 0- to-100 scale. A higher score indicates better functioning.
Summary scores are calculated for the Total score (all subscales, 36 items), The Parent HRQOL score (20
items – Physical, Emotional, Social, and Cognitive Functioning scales) and the Family Functioning
summary score (8 items—Daily activities and Family relationships scales). The subscales Communication (3
items) and Worry (5 items) are calculated separately. The scale has been tested on parents of children with
cancer in Brazil (Scarpelli et al., 2008) and translated and tested in a Swedish version on parents of children
with diabetes (Tiberg & Hallström, 2009).
Parents’ Self-Report of Perceived Anxiety. The visual analogue scale for anxiety (VAS-A) is a graphic
rating scale where the participants are requested to respond to the one question “How anxious do you feel
right now?” by marking a point along a line (0-10 cm) that corresponds best to their perceived anxiety. One
anchor corresponds to “Not anxious at all” (score 0) and the other anchor corresponds to “Worst anxiety
imaginable” (score 10). The VAS-A, with its simplicity, is a suitable scale for repeated measurements of the
state of anxiety in clinically time-constrained situations (Rossi & Pourtois, 2012).
Interviews. Semistructured interviews were conducted with the parents (n = 38) by 2 of the authors (CÅB
and GE) within 3 months after the child’s completed RT. The interviews were performed either in the
hospitals (n = 27) or by phone (n = 11). The interview guide invited the parents to talk about their
experiences of the child’s RT and follow-up questions were posed to cover the topic. In the intervention
group specific questions were posed about the designed intervention. The interviews lasted between 13 and
46 minutes, were tape-recorded and then transcribed verbatim.
Ethical Considerations
A nurse at the ward gave the parents written and oral information about the study when their child was
admitted to RT treatment. They were given time to decide whether or not to participate and gave their
written consent and consented on behalf of their child. Thereafter the children were given age-adjusted
written and oral information and were asked if they would like to participate. Children younger than 15 years
gave their oral assent and children older than 15 years gave written consent to participate. Before the
interviews with the children took place, the interviewers asked the children again for consent/assent. The
study and this procedure follow the rules and guidelines from the Swedish Research Council (CODEX,
2017) and were approved by The Regional Ethic Review Board, Umeå, Sweden (Ref. no. 2012-113 31M).
Analyses (Quantitative, Qualitative, and Integration)

A convergent parallel mixed method approach was used for the analysis of data and integration of results
(Cresswell, 2013). The qualitative and quantitative data were initially analyzed separately by parts of the
research group (qualitative CÅ-B and GE and quantitative VL) and then the mixed results were discussed
among the authors.
Statistical Analyses. SPSS (IBM SPSS Statistics Data Editor Version 23) software was used for the
statistical calculations. Participant demographics were presented with descriptive statistics, group differences
between the baseline group and the intervention group were calculated using the Mann-Whitney U test, and
for paired comparisons before and after RT the Wilcoxon signed rank test was used.
Not all parents returned the PedsQL FIM questionnaire. At the start of the study, 25 (out of 59) parents in
the baseline group and 26 (out of 60) in the intervention group did not respond; at evaluation point 2
(fixation followed by a planning CT), 36 parents in the baseline group and 26 in the intervention group did
not respond, and at the end of RT, 16 parents in the baseline group and 17 in the intervention group did not
respond. In the returned questionnaires there were only a few missing items and none with more than 50% of
the items missing. In the case of a missing item in a scale the mean of the completed items was input.
There were also missing VAS-A ratings. At study start 31 (out of 59) in the baseline group and 27 (out of
60) in the intervention group were missing. At CT and fixation 31 in the baseline group and 23 in the
intervention group were missing; at RT start 13 in the baseline group and 19 in the intervention group were
missing, and at the end of RT 27 in the baseline group and 22 in the intervention group were missing.
Qualitative Analysis. In the qualitative analysis deductive and inductive content analyses were combined
(Elo & Kyngäs, 2008; Rejno & Berg, 2015). Deductive content analysis can be used when the structure of
analysis is made on basis of previous knowledge. Inductively built concepts can be complemented and
developed further using deductive analysis (Elo & Kyngäs, 2008). The interview data were analyzed in
several steps. First, all interviews were read through to get a sense of the content. Thereafter, the interviews
with mothers and fathers were analyzed separately. The first part of the analysis was deductive (Rejno &
Berg, 2015) and built on previous reported findings in Ångström-Brännström et al. (2015) before the
intervention in the current study was done; see Table 4. These findings were used as a starting point.
Statements from each interview concerning parents’ experiences of their children’s RT derived from the
earlier study (Ångström-Brännström et al., 2015) were identified and grouped.
In the second part of the analysis, data that was remaining and not coded were analyzed to determine if it
represented a new category (Hsieh & Shannon, 2005). An inductive content analysis was performed as
described by Graneheim and Lundman (2004). The interview text was divided into meaning units,
condensed, coded, compared, and discussed among the authors (VL, GE, CÅB). Thereafter, the data from
the interviews with mothers and fathers were compared and discussed to find out if there were any
differences or similarities. However, in each subcategory, statements from both mothers and fathers
emerged. The authors discussed and reflected on the subcategories and categories, and the findings were
formulated, resulting in the subcategories and categories presented in Table 5. Quotations from the
transcribed text are shown in the findings.
Integration. The integration of qualitative and quantitative data is illustrated in a parallel joint display (see
Figure 4). The findings were compared, merged together in terms of convergent and divergent findings and
finally interpreted.
Figure 4. Display of qualitative and quantitative findings, merged results, and interpretation of findings.
Results
Quantitative Results
Table 2 presents the PedsQL FIM results. In total, the PedsQL FIM was scored low, with a mean ± SD of 54
± 13.4 for the whole group of parents (0-100, a higher score indicating a better HRQOL), and with higher
scores for both the baseline group and the intervention group at the end of RT as compared with the study
start, though not significantly different. When comparing differences between time points and groups
(related samples Wilcoxon signed rank test) the Family Functioning Summary Score was lower at CT and
fixation (evaluation point 2) as compared with study start (evaluation point 1) in both groups and the
decrease was significantly larger in the baseline group (P = .048). For the HRQOL summary score (Physical,
Emotional, Social, and Cognitive domains) there were significantly higher scores at the end of RT as
compared with study start for both the baseline group (P = .005) and the intervention group (P = .018)
(related samples Wilcoxon signed rank test). In the intervention group, the Worry scale scores were
significantly higher (higher scores mean less worry) at the end of RT as compared with study start (P = .010)
(related samples Wilcoxon signed rank test). There were no significant differences in the PedsQL FIM scores
between the baseline and intervention groups at any of the evaluation points (Mann-Whitney U test).
In total, the parents rated their anxiety significantly higher at the start of the study compared to after
completing RT in both the baseline and intervention groups. When comparing differences between time
points and groups (related samples Wilcoxon signed rank test) no significant differences were found between
study start (evaluation point 1) and CT/fixation (evaluation point 2). The difference in VAS-A (Table 3)
between evaluation points 1 and 4 was significantly larger for the intervention group compared with the
baseline group (P = .015) (related samples Wilcoxon signed rank test). There were no significant differences
between groups at any of the 4 evaluation points (Mann-Whitney U test).
Qualitative Findings
Besides the findings in our previous baseline study—that cancer and cancer treatment turn life upside down
and affect the entire family, RT includes experiencing the child’s suffering and intense feelings, being
prepared by skilled and empathetic staff, and the experience of gradually learning to cope with the process
(Ångström-Brännström et al., 2015) (Table 4)—the current study presents new categories (Table 5) named
Expressing positive feelings, Experiences of using the tablet, Experiences of using the CT and RT models
and stuffed toys, and Parents’ suggestions for improvements of the intervention.
Expressing Positive Feelings.

Experiencing hope and expressing appreciation and gratitude The parents struggled with intense feelings
during their child’s RT, from feelings of deepest despair to glimpses of hope: “It’s a serious illness—the
outlook can change quickly—we know that . . . but we focus on the road ahead . . .” (0114F). They were
planning for being discharged, going back home and being together as a family. The parents commented on
the treatment: “We are incredibly grateful . . . everything is going well now . . . we’ve had good days . . . I
sum it all up in the evenings” (0229F). Many parents commented on the staff’s care, and some described and
expressed gratitude toward the staff: “I really appreciate that the people have chosen the jobs they have and
they do what they do . . . it shows great humility to choose an occupation in which you care for others . . . it
goes well beyond ordinary expectations.” (0219F).
Experiencing openness within the family and among others Some parents described how they felt the
climate in the family had changed for the better. They perceived the family as being closer, caring for one
another and being more open: “We’re extremely open with each other, all of us. It’s really nice. We’ve
become so—what do you call it?—tightly knit, I guess.” (0222M). They also described openness when being
together with other people: “It’s like we’ve all become more open. We’ve gotten to know ‘new people,’ even
though we’ve been working with them for nine years. We talk about different things. When you become
more open with other people, they become more open, too” (0219M). Parents described their reflections and
summarized their thoughts about life and living in a positive way despite their struggle: “I love being with
children [caring for her child]. It’s my life—it brings joy to my life” (0229M).
Experiences of Using the Tablet.

Finding information and preparation suitable Parents described that they found the content on the tablet
“informative” (0326F) and that the tablet was suitable in various ways especially for the younger children, 4-
to 10-year-olds. They described how they and their children found both information and preparation on how
treatment is done through the material presented on the tablet: “I think the small tablet was good. Seeing the
video was good. It let her watch and experience everything beforehand [before the treatment] and see how it
all works. That is how it [patient information] is supposed to be done” (0111F). Some used the suggestions
for preparing their child and tested the mask or lay motionless at home: “I think we did some of those
exercises that were included—like when she lay down on the kitchen table and learned how to lie and so on
—that was of course . . . [pauses] that worked really well” (0319M). The children who had learned to read
went through the written information. Some children appreciated having their “own” tablet, to have control
and to be able to decide what to do with it: “We took the time to sit together and watch—the tablet was hers,
so she could show us [the family]—because it was something we could gather around” (0319F). Some of the
children who were sedated or had anesthesia benefitted from using the tablet to go through their experiences
before and after the treatment, looking at the information and to see what happened. Parents said that
teenagers found the material childish, and as the teenagers often had their own tablet, computer, or cell
phone they were not interested in using the tablet. The youngest children (2-3 years old), the teenagers, and
those who were very ill when treatment started did not use the tablet.
Seeing their children finding pleasure and distraction Some parents described that their younger children
used the tablet in different ways for enjoyment and distraction between treatments—to listen to music, surf
the internet, play games, watch films, do puzzles, and draw. “We played games while we sat and waited . . .
and she had put some photos on it, which she looked at” (0319F). The children also appreciated collecting
the stickers: “After every treatment she gets a sticker that she then puts on the folder . . . that’s working out
well” (0326F). The stickers are also seen as a way to count down: “We decided fairly early to put up a cross-
off chart on the fridge so we could see the process getting shorter and shorter” (0327M). The use varied and
could give a sense of control and a chance to celebrate: “Yeah, you celebrate a little bit as you go along and
you do a bit of a count-down . . . He’s been able to know exactly what’s going on . . . Yeah, he kind of likes
to count, so he’s counted how many times he’s done it and how many times are left” (0318M). Sometimes a
big surprise is a very valuable as encouragement: “And when he was finished he got a huge polar bear stuffy
that was really adorable. It was one of those kinds of things that make you go ‘Wow!’ Encouragement is
extremely important” (0322M).
Finding children’s siblings and friends being involved The information on the tablet could be shared with
siblings: “But she [her sister] looked at them [the videos] again and again because she thought it was so
interesting . . . so after a while he started to watch, too—partly with her and partly alone” (0113M). Both
younger and older siblings used the tablet and they got involved: “Big Sister [6 years old] is often there, too
—she wants to understand what’s happening—so the tablet has been great for her” (0113F). Siblings or
friends joined in the play: “because then they could play together . . . it was ‘patients’ who were going to be
x-rayed or have radiation . . . different dolls and animals with IV tubes, and one with a bandage on its head .
. . and they have had these reward boxes filled with presents . . . [laughs]” (0326M). In some cases, siblings
have used the tablet more than the child in treatment. The tablet was also used by the children to show and
tell their friends and classmates what is going on during treatment: “At first she was always showing her
friends the tablet—talking about what she was going to do, things that have happened and so on” (0111F).
Experiences of Using the CT and RT Models and Stuffed Toys.

Finding their children are using models and toys before and after treatment Parents described that the
younger children played with the models and stuffed toys placed in the waiting area in the RT department: “I
imagine this waiting room was actually inspiring—it was so pretty, with all the animals and the masks, the x-
ray and the radiation machine and so on” (0326M). According to the parents, to first see and be informed
about the big machines and the procedure, and then to play with the small models and the stuffed toys was of
great importance: “They’re small objects, and the kids get to play by themselves . . . that can mean so, so
much—just playing. Hugo was of course fantastic because he was ahead of us in many ways. He [the child]
knew what to expect” (0229F). Parents found that the children had understood the procedure because of the
play with the models: “We went there [visited the radiation machine], checked it out and played with the
machines there . . . because she recognizes the machines, of course . . . She went and put a blanket under [her
stuffy] every time, and I can imagine that she herself lay in that position [laughs]” (0115M). It also
encouraged extended playing: “He also played a lot of hospital games with the preschool instructors at play
therapy” (0229M). Even for the children who had anesthesia, spontaneous playing was important: “When we
were doing the radiation, the child [2 years old] got to play with the radiation machine and she was familiar
with the whole procedure” (0112F). Older children also appreciated the stuffed toys. Sometimes stuffed toys
were used as therapy for their own experiences: “If she [10 years old] is angry because they have to insert a
probe, well, she’ll go and do the same thing to a teddy bear or something afterwards” (0111M).
Finding the models and toys are inviting both children and siblings to play Parents of the younger children
noticed that their children loved to play with the models and toys, not only for the purpose of getting
preparation and information, but for the joy they experienced: “and it was great for the siblings, and Little
Sister thought putting things on [the model] was really fun . . . [child’s name] put these stickers on the
machinery and . . . yeah, out there” (0318M). The models and toys invited spontaneity: “She [Big Sister]
played with the machines almost every day. Once we even went in the afternoon because she wanted to go
there and play” (0113F). Parents further described how the siblings took care of the elephant Hugo and gave
him RT treatment while their sibling was having treatment.
Parents’ Suggestions for Improvements of the Intervention.

Wanting the tablet to be developed technically and adapted for use Parents found the tablet useful for
preparation and information for their children. However, there have been technical difficulties when using it
for distraction, for example, listening to music and looking at a film during RT treatment: “There were some
problems with it—the tablet didn’t work, sometimes there was no sound, sometimes no image. We were
given another tablet” (0112F). Parents stressed that the tablet was a good thing to use for distraction during
the treatment, but to be useful it had to work perfectly: “He was supposed to be able to see wearing glasses
and stuff but it didn’t work so that was a bit of a shame, but he let go of it immediately” (0318M) and “It
could have gone very badly, because he was supposed to have been able to watch a video and had chosen a
video and downloaded it onto the tablet, but it didn’t work . . . We tried twice, then he [the child] shrugged
his shoulders and said ‘I’ll just lie down here by myself’” (0318F).
Requesting more detailed and adjusted information about what radiation is for their children and
themselves During the interviews the parents expressed their thoughts about radiation. “Maybe a little more
information about radiation and its possible side effects—I would have liked to have had that. Things that
can happen, everything . . . different types of radiation technology.” (0112M). They considered the
information insufficient: “I’ve tried to find information on the internet—what type of radiation they use—
I’ve explained to the child how the radiation is created, because there’s nothing about that in the video”
(0111F). Radiation was experienced as a serious and advanced treatment and some children understood that
other people thought they suffered from a serious condition. The children were informed that radiation was
needed, but the information could be experienced as contradictory: “You tell children it’s not so bad, but
then all the grown-ups run out” (0327F). Some parents described that their children were afraid, and thought
that radiation was like “Star Wars or a weapon shooting out something” (0319F).
Asking for individualized recurrent information about RT for their children and themselves and adjusted
to the child’s age and illness Parents expressed that uncertainty and worries could be dispelled through
information and they had suggestions on how to improve information for their children and themselves:
“The tablet has general information about the radiation process, but it should be more specific, depending on
what body part is going to get the radiation” (0114F). Furthermore, the parents suggested that the
information should be targeted and more exact about the procedure at the radiation ward and adjusted to the
child’s diagnosis, otherwise the child could not apply the information to themselves: “It said you would get a
yummy treat afterwards—like what that elephant got—strawberry popcorn—so she asked if that was true.
They’re very focused on the details at this age [age 6]. The information material focuses heavily on brain
tumors, but there’s a mighty big difference between brain tumors and kidney tumors” (0319M). Parents’
questions and needs changed over time and they asked for recurrent information on several occasions, both
written and oral. Parents and children appreciated being able to ask: “If you have any questions, better to ask
one too many than too few. A lot of people feel very anxious when they go there but they feel calmer once
they get information” (0327F).
Integration of Qualitative and Quantitative Data.

Merged results The finding of very low total scoring of PedsQL FIM for parents during their child’s RT (see
Figure 4) converges with the category “Cancer and cancer treatment turn life upside down and affect the
entire family.” This is not an unexpected finding, and the subcategories “Experiencing shock and
overwhelming feelings, “Being anxious about the child’s health and survival” and “Dealing with practical
issues and sharing responsibility” explains their family situation during the child’s cancer treatment well.
The parents expressed a range of negative experiences in the categories “Life turning upside down,”
“The child’s suffering,” and “Experiencing intense feelings” converging with the low HRQOL scores.
Positive experiences were expressed in the categories “Radiotherapy includes preparation by skilled and
empathetic staff” and “Radiotherapy includes the experience of gradually learning to cope with the process”
and in the intervention group “Expressing positive feelings”, converging with the finding of higher scores of
HRQOL and less worry at the end of RT.
Less worry at the end of RT in both groups and a significant difference in the intervention groups
converge with the category “Radiotherapy includes preparation by skilled and empathetic staff.” The
involvement of parents, siblings, and children in the preparation and treatment process might also have
contributed to the significant findings of less worry in both PedsQL FIM and VAS-A.
There were no explicit diverging results, though the parents expressed that information and technique,
even if it had been helpful, needed to be more tailored and refined. The interpretation of the merged results
will be presented in the discussion.
Discussion and Interpretation

The main findings of the present study are summarized as interpretations of the merged mixed results (see
Figure 4). The interpretations will be discussed below.
RT for Children Causes Distress for Parents—Well Thought-out Preparation Decreases Worry
The results in the present study reveal that parents experience distress when their child is undergoing RT,
though this period during the child’s cancer treatment is otherwise sparsely described compared to the
overall impact of childhood cancer on parents’ well-being (Kearney, Salley, & Muriel, 2015).
In the deductive analysis of the interviews in the present study the same categories occurred after the
intervention as in the baseline analysis (Ångström-Brännström et al., 2015), revealing the same parental
patterns of distress and that it is demanding for the parents to have a child undergoing RT (Filin et al., 2009;
Ångström-Brännström et al., 2015). Gårdling, Törnqvist, Edwinson Månsson, and Hallström (2017) also
found that parents struggled with despair and had feelings of powerlessness during their child’s RT. In the
present study, parental HRQOL as measured by PedsQL FIM showed overall low scores. The scores were
comparable to those of parents of children with medical complexities (Johaningsmeir et al., 2015) and lower
than ratings made by parents of children with other chronic conditions and parents with healthy children
(Jastrowski Mano, Khan, Ladwig, & Weisman, 2011; Medrano, Berlin, & Hobart Davies, 2013; Panepinto,
Hoffmann, & Pajewski, 2009). In the present study, PedsQL FIM was measured at 3 different study events
during a short time frame. The assumption that the total HRQOL scores would change significantly during
this short intervention might have been uncertain, as was the case in the study by Johaningsmeir et al. (2015)
where a complex intervention over two years did not result in increased total HRQOL scores. On the other
hand, the specific subscale for worry might be more sensitive (Panepinto et al., 2009). In the present study,
the paired comparisons showed differences in the Worry scale after the intervention, revealing slightly less
worry rated by the parents in the intervention group. The larger decrease in VAS-A in the intervention group
when comparing before and after RT was in line with the findings for the sub-scale worry in PEDSQL FIM
in the present study.
Facing the low HRQOL scores at the start of RT in this sample, it appears that nursing assessment of
family health should be performed during the entire cancer treatment trajectory, not only during the initial
acute phase. This is also stated by Kearney et al. (2015) in the systematic review addressing “psychosocial
standard of care for parents of children with cancer.” Interventions to support families psychologically
during the treatment period are essential for good care (Steele, Mullins, Mullins, & Muriel, 2015).
Interventions to psychologically prepare and support children and parents during medical procedures in
pediatric oncology have been extensively studied (Flowers & Birnie, 2015). Many of the interventions are
specific single actions performed by nursing staff before and during a painful procedure (Uman et al., 2013).
Involving family in the preparations is shown to be favorable (Fortier, Blount, Wang, Mayes, & Kain, 2011).
In the present study, we aimed to develop a systematic process for preparation and distraction, starting with
training at home with the family and involving siblings in what was going to happen. Staff at all units
involved in the RT treatment process followed the same preparation strategy. Even if such a complex
intervention was demanding, it is possible that the involvement of family and the systematic approach
contributed to ease the parents’ anxiety.
The Preparation Procedure Involves Parents Through Direct and Indirect Participation and
Through Seeing Their Children Play and Have Fun
Besides visiting the RT department ahead of the start of the treatment, the preparation material in the study
was available at home as well as at the hospital, giving parents and children several opportunities to see and
practice different situations described in the material. The positive impact of playing and training is reported
by Moore, Bennett, Dietrich, and Wells (2015) in children with burns and by Li and Lopez (2008) in surgery
for children. Furthermore, Fortier et al. (2015) found that skills training and interactive games reduced worry
in parents whose children were undergoing surgery. According to parents’ interviews, the intervention and
the toys at the RT department fulfilled the purpose of preparing the parents and the child for the RT process,
especially for the younger children. The HUGO material was a support when discussing upcoming steps in
the treatment process, that is, fixation, CT, and RT periods. According to parents, it also helped them talk
with siblings and friends, which was described as important for the family.
Parents in the current study saw their children being well prepared, resulting in less fear and worry and
therefore they were indirectly prepared. If the child is well prepared and therefore can handle the situation, it
seems that the parents are more able to endure their child’s RT. This is described in the category “Being
close to the child and sharing similar feelings” in the present research and in the previous study (Ångström-
Brännström et al., 2015). Parental presence, including providing care and support, is found to reduce
parental anxiety (Ångström-Brännström, Norberg, Strandberg, Söderberg, & Dahlqvist, 2010; Fortier et al.,
2015). Reduced parental anxiety can in turn decrease child distress and anxiety (Moore et al., 2015). A
package with systematic psychological preparation and distraction strategies like HUGO for kids and teens
can help parents and children through the process.
A new category arose in the inductive analysis after the intervention, labeled “Expressing positive
feelings.” It is possible that positive feelings emerged due to the intervention and the positive effects of
seeing their child using the tablet, the stuffed toy and the CT and RT models, especially for parents of
younger children who usually have more difficulties enduring the procedure (Bucholtz, 1994; Filin et al.,
2009; Haeberli et al., 2008; Willis & Barry, 2010).
Furthermore, the RT and CT models gave opportunities to play. The models stimulated the children to
engage in extended play by going through their experiences by themselves or together with siblings and
friends, and having fun, which created positive effects for the entire family and its social context. Even the
children that had anesthesia used the material given to them as an opportunity to understand what happened
during the RT procedure. Thus, the intervention provided positive experiences for the parents. Moreover,
even descriptions of positive experiences after adversity in terms of posttraumatic growth (Tedeschi &
Calhoun, 2004) have been found for parents and siblings of adolescents with cancer (Turner-Sack, Menna,
Setchell, Maan, & Cataudella, 2016), for example, close relationship and a sense of appreciation, which is
described by some parents in the present study. It can be speculated that positive experiences from an
intervention in a threatening situation can contribute to posttraumatic growth, although the parents reach the
end of the child’s treatment not knowing if it has been successful or not, but hoping for the best.
The Technical Solutions and Information Need to Be Developed and Tailored

There was criticism from some parents concerning technical problems that resulted in not using the tablet in
the treatment room. The situation in the RT room is technically demanding for security reasons, and in this
aspect the intervention was not sufficiently developed technically at start of the intervention phase. To design
and develop software for children with severe illness poses a number of challenges. Ruland, Starren, and
Vatne (2008) used a participatory design involving children in the development of a support system for
seriously ill children. They concluded that although the children were creative and helpful, system
development for pediatric oncology environments also requires psychological and pedagogical insights and
design and usability expertise. The present study describes the first test of the intervention developed using
an innovative HCD approach involving families and professionals, though not yet extensively tested for
usability in the demanding environment of the RT department. Similar computer- and web-based concepts
for support, SISOM (Arvidsson et al., 2016), and preparation of families before anesthesia, WebTIPS
(Fortier et al., 2015), are described to having undergone several phases of tests and further development
before final implementation.
Other criticism focused on the need for more individualized information on the tablet. In the digital story,
Hugo the elephant had a brain tumor, which is the most common tumor treated with RT, but some children
had other localizations. In future versions of HUGO for Kids, stories and information about tumors located
in the head-neck, thorax, abdomen, and arm/leg might be added. When developing WebTIPS to prepare
parents and children before outpatient surgery, a tailored strategy was used to design parent and child
information and instructions for the learning of coping skills (Kain, Fortier, Chorney, & Mayes, 2015).
However, the physicians and the staff at the RT unit must give the individual detailed information about
treatment and side effects. Information needs to be family-centered and also treatment-specific (Mu et al.,
2015). Enskär et al. (2015) address the most important clinical implications from nursing and psychosocial
research. Education and support to all family members appropriate for the individual child and parent and at
the correct time is essential. Consensus recommendations from Children’s Oncology Group also cover
several important issues, for example, that patient/family education should be family-centered and occur
across the continuum of care, and that all health care professionals should receive training in the principles
and practice of patient/family education in pediatric oncology (Landier et al., 2016). Many parents asked for
more information about how RT works, thus indicating that the staff and physicians working at RT units
must be more proactive in helping parents and children to understand the basics of radiation, as well as the
side effects of treatment given. In an optimal situation, information about RT and side-effects is given to the
child and parents when they are with staff and physicians at the pediatric unit.
In the future, information about how RT works and side effects could be more developed and made
suitable and attractive through a webpage for children that is adapted to different ages. In the present study
the interviews revealed that the intervention was most appreciated by the parents of younger children. The
approach we used for the adolescents in the present intervention of presenting internet links directed to sites
with good quality information might be justifiable, especially when considering to the large quantity of
medical information of uncertain quality on the internet (Roshan, Agarwal, & England, 2008) and mobile
apps lacking evidence-based information (Majeed-Ariss et al., 2015). The material in our study was selected
and read through and deemed as correct and useful.
Methodological Considerations
The time limit of at least 5 days for preparation with the HUGO material before RT was an obstacle to
including participants in the study in some situations. Short and intensive visits at the Department of
Pediatric Oncology for having chemotherapy or undergoing different investigations was not always easy to
coordinate with a preparation visit at the RT department. Neither could long-distance patients always come
for an extra visit to have the HUGO material if they had missed a scheduled meeting at study inclusion. On
the other hand, having enough time to become familiar with the HUGO material was considered important
for both parents and the child. When preparing parents for their child’s surgery, 5 to 7 days of preparation
time has been shown to be successful (Kain et al., 2007), while to prepare parents only shortly before the
surgery resulted in no reduction in the child’s anxiety (Bailey, Bird, McGrath, & Chorney, 2015).
There might have been some limitations in using the PedsQL FIM for measuring changes in the families’
overall wellbeing between evaluation points only days or a couple of weeks apart. Although the scale is
judged to be valid and reliable there are concerns about the discriminant validity (Medrano et al., 2013). The
VAS-A captures more instant changes in anxiety state and the instrument is suitable for repeated
measurements (Rossi & Pourtois, 2012). The scale has been used for similar purposes in other studies, rating
parents’ perioperative anxiety when their child is undergoing scoliosis surgery (Kwan, Chiu, Gan, & Chan,
2016).
In the present study, the qualitative data were rich with full descriptions of the topic, giving a good
substratum for the analysis. Combining prior research findings in the deductive analysis with new findings
from the inductive analysis strengthened and further explored the findings (Rejno & Berg, 2015).
Trustworthiness was achieved by commitment to the steps in the chosen method and description of these
(Rejno & Berg, 2015), participants with various experiences, ages, and genders were chosen (Graneheim,
Lindgren, & Lundman, 2017), and authentic citations are provided in the findings (Elo & Kyngäs, 2008).
Furthermore, credibility was also achieved through dialogue about the analysis among the authors
(Graneheim et al., 2017). The analysis of both qualitative and quantitative data provided similar findings,
which strengthens credibility (Morse, 2015).
This was a mixed methods study where quantitative and qualitative data were merged together. In the
best situation, interviews, questionnaires, and ratings would contribute equally to the analysis. Unfortunately,
the quantitative data, with several missing data, did not contribute as much as the interviews to the
summarized result. Our intention was to use a concurrent complementary mixed methods design to cover a
spectrum of parental insights during their child’s RT and the effects of the intervention (Andrew & Halcomb,
2009). Although the data were not equally weighted in the merged results, it displays more than one picture
from the same participants woven together, though it was only in the qualitative results that the nuances of
distress and positive feelings appeared.
Statistical considerations were that the relatively small numbers for statistical analysis in the 2 groups
(baseline and intervention) might have contributed to the non-significant results between groups. The main
reason for the missing data was the lack of a center-specific monitoring person in the study, following the
child and parents through the study flow. The complex nature of this intervention would have required a
strict protocol for checking treatment fidelity to intervention, including pretesting the intended intervention,
training of personnel, and monitoring of delivery of the intervention (Gearing et al., 2011). The overall
burden on these parents is heavy and study participation is an additional task for them. Parents share the
duties in the family, that is, taking care of siblings and usually only one of the parents followed the child to
the RT. This resulted in missing data when only one of the parents rated the child’s VAS and responded to
the questionnaire at the RT.
The working situation for the staff at the departments is very busy, and the time schedule for parents and
child equally so.
To implement such a complex intervention would preferably have required profound changes in care
organization, in this case involving a shift to more family-centered care within units and in the care-chain
between units. A family-centered approach is not always the priority of medical staff (Caruso Brown, 2015),
even if its importance is emphasized in research implications and standards for patient and family education
in pediatric oncology care (Enskär et al., 2015; Landier et al., 2016).
Conclusion and Directions for Future Research

A well-thought-out procedure contributes to parents being able to understand and cope with the child’s RT,
creating positive feelings due to close interaction with staff and each other within the family. Although this
intervention needs further development and rigorous testing, the innovative solutions developed within a
HCD approach and shaped as a systematic family-centered preparation strategy contributed to parents’
positive experiences for their child, siblings and themselves and, in addition, reduced anxiety. More
diagnosis- and age-adjusted information and user-friendly technology might be tested in a future design
model and an emphasis on family-centered organization of care should be included in the study protocol.
Acknowledgments
The authors would like to thank all parents who participated in the study and generously shared their experiences. We are
grateful to all staff at the radiotherapy departments and the pediatric oncology centers who helped us collect the data for
the study.
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) received financial support from the Swedish Childhood Cancer Foundation for the research, authorship,
and/or publication of this article.
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Author Biographies
Charlotte Ångström-Brännström, PhD, is a pediatric nurse and senior lecturer in the Department of Nursing at Umeå
University, Umeå, Sweden. All researchers listed here are working in a project focusing on the development of new
innovative methods to alleviate anxiety and discomfort in children and families during the radiotherapy process.
Viveca Lindh, PhD, is an intensive care nurse, in the Department of Nursing, Umeå University, Umeå, Sweden.
Tara Mullaney, PhD, is a design researcher at Veryday, Stockholm, Sweden.
Kristina Nilsson, MD, PhD, is an oncologist in the Section of Oncology, Department of Oncology, Radiology and
Clinical Immunology at the Uppsala University Hospital, Uppsala, Sweden.
Gun Wickart-Johansson, MD, is an oncologist in the Department of Radiation and Oncology, Radiumhemmet at the
Karolinska University Hospital, Stockholm, Sweden.
Anna-Maja Svärd, MD, is an oncologist in the Department of Radiation Sciences at Umeå University, Umeå, Sweden.
Tufve Nyholm, PhD, is a physicist in the Department of Radiation Sciences at Umeå University Hospital, Umeå,
Sweden.
Jack Lindh, MD, PhD, is an oncologist and Professor Emeritus in the Department of Radiation Sciences at Umeå
University, Umeå, Sweden.
Gunn Engvall, PhD, is a pediatric nurse and senior lecturer in the Department of Women’s and Children’s Health at
Uppsala University, Uppsala, Sweden.
20/12/2023, 14:32 Nurses’ Experiences Caring for Children With Neuroblastoma Receiving 131I-Metaiodobenzylguanidine Therapy: A Qualitati…
Journal of Pediatric Hematology/Oncology Nursing

Volume 40, Issue 2, March 2023, Pages 82-90
Research
Nurses’ Experiences Caring for Children With Neuroblastoma

Receiving 131I-Metaiodobenzylguanidine Therapy: A Qualitative
Descriptive Study
Kelly Lankin, PhD, MS, RN, CCRN-K 1, Cynthia M. LaFond, PhD, RN, CCRN-K 2,3, and Alyssa
Yost, BSN, RN 4
Abstract
Background: Neuroblastoma, the most common extra-cranial solid tumor found in children, carries a high
mortality rate due to challenges with metastatic disease at diagnoses and relapse. 131I-
Metaiodobenzylguanidine (I-MIBG) therapy provides targeted radiotherapy to treat neuroblastoma, but
requires children to be isolated for radiation exposure, with limited access to the healthcare team while
hospitalized. There is minimal research outlining the nurses’ perspectives on caring for this patient
population. Therefore, the aim of this study was to describe the nurses’ experiences caring for children
receiving 131I-MIBG therapy, focusing on nursing care, challenges, radiation exposure, and preparation.
Methods: Ten nurses were recruited using purposeful sampling for this qualitative descriptive study. Semi-
structured interview guides and conventional qualitative content analysis guided the data collection and
analysis. Results: Nurses overwhelmingly felt isolated from their patients and a decreased sense of
connection with the child. Although nurses felt prepared, they had more anxiety with the first patient
experience and identified that parent engagement was essential. Overall, nurses shared they had support
from written materials outlining the protocols, and members of the multidisciplinary team. More concern for
radiation exposure was expressed by nurses of childbearing age and with handling bodily fluids. Discussion:
Findings suggest that nurses would benefit from simulation experiences to help prepare for radiation
exposure safety, strategies to engage the family in the child's care, and interacting with a child in single-room
isolation. Because programs differ around the US, additional research exploring nurses’ experiences is
warranted to evaluate the best successes in providing 131I-MIBG therapy.
Keywords
neuroblastoma, radiotherapy, pediatric oncology, qualitative
1 The University of Chicago Medicine, Comer Children's Hospital, Chicago, IL, USA
2 Ascension Health, St. Louis, MO, USA
3 The University of Chicago Medicine, Chicago, IL, USA
4 Department of Pediatrics, Section of Hematology/Oncology & Stem Cell Transplantation, The University of Chicago, Chicago, IL,
USA
Cynthia M. LaFond, Ascension Health, 4600 Edmondson Road, St. Louis, MO 63134, USA. Email: cynthia.lafond@ascension.org
Introduction
Six percent of cancer cases in children under the age of 15 in the United States are attributed to
neuroblastoma (Siegel et al., 2022), a neuroendocrine malignancy affecting the sympathoadrenal cells of the
adrenal medulla and sympathetic nervous system (Olecki & Grant, 2019). Outcomes of those with the
diagnosis vary substantially by risk group, with 5-year event-free survival rates ranging from 89.4% in
individuals at low risk to 50.8% in individuals at high risk (Irwin et al., 2021; Siegel et al., 2022).
Consequently, the treatment of high-risk neuroblastoma is aggressive and uses a multimodal approach
including chemotherapy, surgical removal, radiotherapy, autologous hematopoietic stem cell transplant, and
immunotherapy with monoclonal antibodies that target the glycolipid GD2 receptor (Applebaum et al., 2017;
Coughlan et al., 2017). 131I-Metaiodobenzylguanidine (131I-MIBG) is a high-dose intravenous radiotherapy
administered to patients with metastatic neuroblastoma and more recently in clinical trials for newly
diagnosed high-risk disease (Applebaum et al., 2017; Breneman et al., 2018). Metaiodobenzylguanidine
(MIBG), a drug that is an analog to nor-epinephrine and uptakes to neuroendocrine cells, provides targeted
radiation therapy to the neuroblastoma cells when attached to high-dose radioactive iodine (131I) (Agrawal et
al., 2018). To limit radiation exposure to others following 131I-MIBG infusion, children are required to be
isolated for 3 to 7 days, preferably in lead-lined rooms, until local radiation restriction requirements are met
(Agrawal et al., 2018; DuBois et al., 2015; Flori et al., 2020). Due to the cumulative risk of radiation
exposure for healthcare workers, 131I-MIBG therapy programs rely on family presence in the hospital (Sharp
et al., 2016). Parents take on additional responsibilities such as administering oral medications and emptying
the urinary catheter drainage bag, to reduce nurses’ radiation exposure (Sharp et al., 2016). Although nurses
do provide necessary care to the child, their time in the room is limited to as little as 30 min per shift, and so
nurses have a larger responsibility supporting the family in their role of caring for the child. Parents describe
multiple supportive actions provided to them by nurses while their child is in single-room isolation for 131I-
MIBG therapy (LaFond et al., 2022).
With nurses and family members as the primary caretakers during 131I-MIBG therapy, there is always a
concern for exposure to radiation. Caretakers must use radiation safety precautions, including personal
protective equipment (gowns, masks, and shoe covers), radiation exposure monitoring devices, and follow
ALARA (as low as reasonably achievable) principles (Gains et al., 2015; Sharp et al., 2016). 131I-MIBG
therapy is dosed per/kg, so children who are older receive higher doses of radiation, which in turn, emits
higher amounts of radiation to the caregivers. However, nurses and family caregivers overall are exposed to
minimal doses of radiation when using appropriate precautions and maintaining minimal time in the room,
distance from the patient, and shielding (Gains et al., 2015; Han et al., 2017; Willegaignon et al., 2018).
Usual practices for the delivery of nursing care in the inpatient oncology setting are disrupted in the
context of 131I-MIBG therapy due to radiation exposure risk. Yet, there is a dearth of literature regarding
nurses’ experiences with this patient population. Therefore, the aim of this study was to describe nurses’
experiences caring for children in single-room isolation for 131I-MIBG therapy, explore their preparation and
comfort level in caring for these children and families, and evaluate for the presence of radiation exposure
concerns.
Methods
Design
A qualitative descriptive design was used to meet the study aims. The findings reported in this paper are part
of a larger qualitative study that evaluated the experience of children in single-room isolation for 131I-MIBG
therapy and their caretakers (parents and nurses) and identified emotional and physical stressors for the
children, and interventions that facilitate coping (LaFond et al., 2022).
Sample and Recruitment

Data were collected from nurses working on an inpatient pediatric oncology/stem cell transplant unit at an
academic medical center in the Midwest, using a purposeful sampling method to provide variation in shift,
experience, and gender (Patton, 2015). Nurses were recruited passively, through emails and flyers, and were
eligible if they had cared for a child who received 131I-MIBG therapy within three weeks of the interview
and were functioning independently (not in orientation/training) when they cared for the child. Once a nurse
expressed interest in participation, the principal investigator (CL) provided further information about the
study and consented the participant (CL). Careful attention was paid to using members of the research team
who were not in a supervisory or clinical resource role with the participants of the study to consent and
interview participants.
Measures
The nurses completed a demographic survey that included the following: gender, race/ethnicity, nursing
experience, nursing education, nursing specialty certification, primary shift worked, and number of patients
they cared for who received 131I-MIBG treatment in the past 6 months. A semi-structured interview guide
was used to direct the interview and included questions that addressed preparation, radiation exposure
concerns, and nursing care (Table 1). Three experienced pediatric oncology/stem cell transplant staff nurses
from the study site reviewed the interview guide and provided feedback for comprehensiveness and clarity.
Procedures
Approval from the Institutional Review Board (IRB14-1192) and internal research committees was obtained
prior to data collection. After written consent was obtained, the nurses were interviewed at their
convenience, privately, and face-to-face with a PhD prepared experienced qualitative researcher (CL). All
the nurses chose to be interviewed at the hospital in a room adjacent to their work unit. The interviews were
recorded, transcribed verbatim, checked for accuracy after transcription, and compared to the field notes
taken (Ulin et al., 2005). Participants were compensated with a $20.00 gift card and letter of participation.
Analysis
The data analysis for the aims of this study followed a conventional qualitative content analysis (Hsieh &
Shannon, 2005). Larger themes were derived inductively using a team approach to coding to maintain
credibility and the codes were kept well-defined to prevent drift and maintain dependability (Creswell &
Miller, 2000). All authors contributed to coding, with each interview transcript coded by two authors.
Discrepancies were resolved and new themes/subthemes discussed during bi-weekly meetings. The matrix
method was used to reduce and display the data (Miles & Huberman, 1994) and the research team stored and
organized the data using NVIVO (version 12).
Results
Ten nurses consented and participated in the study (Table 2). The range in experience as a nurse was 2.5 to
35 years and as a pediatric oncology nurse 5 months to 26 years. Six of the nurses provided an interview
after caring for a patient receiving 131I-MIBG therapy for the first time, and four had cared for one or more
children receiving 131I-MIBG therapy prior. Both day shift and night shift were represented, and two nurses
were listed as certified in their clinical specialty. On average, interviews were 24 min in length, ranging from
16 to 31 min. Data saturation was achieved at six nurses as evidenced by a repetition of the themes identified
(Braun & Clarke, 2019; Fusch & Ness, 2015; Guest, Bunce, & Johnson, 2006). Four additional nurses were
interviewed to obtain more variation in the sample and to confirm saturation was achieved. Five themes were
identified and include isolated from the patient, parent engagement, feeling prepared, nursing clinical
support, and radiation exposure concern.
Isolated From the Patient

All of the nurses in this study described having to spend less time with the patient, resulting in “hands off”
care. This experience is very different from usual patient care and contributed to a decreased sense of
connection with the child, as one nurse quoted: “You can’t interact with them as much as you would with
just a regular oncology patient … You feel a little bit isolated from them” (Nurse 10). Nurses also described
their frustration with their isolation from the children, “I think that was frustrating because you wanna help
and you wanna be in there, but you can’t for a long period of time” (Nurse 9). Typically, nurses assess the
patients at least every 4 hours or more frequently as needed, with hourly intravenous line assessments. With
this 131I-MIBG patient population, only one assessment is completed per shift once the child is stable after
the initial infusion. One nurse shared,
As a nurse, it's hard not to do everything we’re used to doing—and to not go in the room often like with other
patients … you have to get used to not being with your patient. I cared for a sicker patient and the dad was
helping – to know that she was sick and I wasn’t taking care of her, that was very difficult. (Nurse 3)
Another nurse acknowledged that the child must feel isolated as well from this experience along with the
nurse and supported their own feelings of isolation from the child:
… you feel like you’re not doing that much – you’re not taking that much care of them. You just do vitals once,
one assessment, and then just constantly checking in the parents. So you feel like while I assume the child feels
very isolated, you feel pretty isolated from the kid too. (Nurse 1)
Parent Engagement
As a result of decreased time in the room, parents were described as essential to the nurses’ experience. As
one nurse stated, “If it wasn’t for the parents, there's no way we can do MIBG. It's impossible” (Nurse 10).
More engaged parents facilitated a more positive nurse experience. One nurse described working with a
family who were engaged and participated in the care of the child:
I was just so impressed with what the family had setup with the patient prior to the infusion in regards to ways
they would interact and games they would play with the walkie-talkies that I think it made her experience easier.
It made their experience easier. Ultimately, when both of them are having a good experience (family and child),
it makes it easier on the nursing staff. (Nurse 5)
Another nurse described that parental engagement makes the biggest difference in the nurses’
experiences caring for children who have received 131I-MIBG therapy. When parents are not as engaged and
participative, it creates more stress on the nurses to push the family to be more involved, and potentially take
more of a radiation exposure risk if they are going into the room to care for the child more than they should.
It's hard when parents aren’t as engaged because then it becomes the nurse's responsibility to get them engaged.
It's hard when you need to wake them up in the middle of the night and remind them that they need to go drain
the Foley or wake them up to give the medication … The participation, I would say, of the parents really changes
the experience … (Nurse 6)
Feeling Prepared
Nearly all the nurses interviewed felt adequately prepared after their first experience caring for a patient who
received 131I-MIBG therapy. They reported greater anxiety with the first patient, but felt more comfortable
after they had one shift, as stated by one nurse: “I think these patients come so infrequently, . . . The
following day, 12 hr later, I was completely comfortable” (Nurse 7). Another common challenge identified
with 131I-MIBG therapy is the infrequency of this treatment. As nurses may go a long period of time in-
between caring for these children and families, they identified the need to review the protocols for care prior
to each experience:
I think that people have been prepared. Again, I think it's the timeframe between them, that you have to readjust
yourself to what you’re supposed to do again … You’re not doing it with such frequency that it becomes second
nature. (Nurse 8)
Nursing Clinical Support

Nurses were asked if they felt supported in caring for children who received 131I-MIBG therapy and
elaborated on what was most supportive in the clinical setting. Seven nurses overwhelmingly described the
best resource as being the informational binder that was available, outlining 131I-MIBG protocols, use of
PPE, and informational articles. One nurse quoted: “Having the resource binder was a great refresher on just
the expectations of the nurse, what our role should be, and the proper way to gown up and use the monitors”
(Nurse 6). Another nurse shared this sentiment and added that the MIBG binder was helpful with the large
gaps in time between patients:
I would say that I think the MIBG research nurse had done a great job of preparing an MIBG resource binder for
us and so if you had any questions, that was a great resource to be able to go back to, especially because it seems
like most recently there's been large gaps between MIBG patients. Having the resource binder was a great
refresher on just the expectations of the nurse, what our role should be, and the proper way to gown up and use
the monitors. (Nurse 6)
As much as written materials were a primary source to assist with education and preparation, nurses also
found clinical support in those individuals who are part of the multidisciplinary team. Five nurses talked
about the support that they received from their peers upon handoff or during the shift “I had the nurse from
the night before show me quick reminders” (Nurse 5).
The 131I-MIBG program at the institution studied has a research nurse dedicated to supporting the
families and nurses, as well as oncology research. Four of the nurses shared their experiences of the research
nurse being a strong resource for them. “…Knowing we could call our MIBG research nurse” (Nurse 3). The
radiation safety team at the study institution also played a large role in supporting the nursing staff. The
radiation safety team was present on the day of the infusion, when the child was most radioactive, and
helped with the proper use of PPE and keeping the nurses safe. “What was actually very helpful is the
radiation safety – I asked a bunch of questions … She actually hung out all day on the day of the infusion, so
she was there to answer questions” (Nurse 6).
Radiation Exposure Concern

Six nurses in this study expressed concerns about radiation exposure when asked. One of the major factors
discussed was the exposure to the nurses of childbearing age. Several fears were shared about being exposed
to radiation with an early unknown pregnancy. As one nurse stated, “… because I’m still in the child-bearing
age, not that we’re actively trying to have a child, but what if, you know, and I’m not sure, so I don’t want to
be exposed” (Nurse 4).
Another concern with the radiation exposure is that radiation is not visible. The nurses described the fear
that you can be exposed without feeling the exposure. “It's like an obscure concern, because you can’t really
see it. You can’t see the effects, but you still want to protect yourself as with anything” (Nurse 5). This is the
same concept with being exposed to bodily fluids, which are all radioactive for several days after the 131I-
MIBG infusion. Nurses expressed some fear in cleaning up urine spills and drawing blood from the child:
Yes. When needing to draw labs … Once you draw those labs, they have to be approved by radiation oncology
before they can leave the room … My levels of exposure were higher … you think twice about it. (Nurse 6)
Several nurses described strategies regarding how they decrease their radiation exposure when caring for
these children. It was apparent that nurses cannot run in and out of the room frequently, so they shared how
they have to be organized and cluster their care to be in the room for less time:
Whenever I go inside this patient's room, I make sure that I organize … I go through my head what I’m going to
do … The more time you’re in the room, the closer you are to the patient, the more radiation you get. (Nurse 4)
Because neuroblastoma affects young children, many of those receiving 131I-MIBG therapy are younger
children who require closer monitoring and emotional support. Some nurses faced conflicting circumstances
to meet the needs of the child while also observing personal safety measures. One nurse described her
experience of a child in radiation isolation asking for a hug:
She's a child – when she's asking to hug you, and when she's asking for you to stay there, you can’t just be like,
‘No, I can’t be in there’. It was difficult in terms of handling my safety and then hers, too. Safety, as in, did she
feel secure in the room? (Nurse 9)
Three nurses shared that they did not have radiation exposure concerns. One nurse shared that using
proper personal protective equipment (PPE) helped her to feel secure and safe and that the exposure to
radiation is minimal.
No … The radiation safety team showed me how to do everything, so I felt very supported and that I actually
knew what I was doing when I was going into the room; with the proper gown and gloves and booties to wear,
and that sort of thing. (Nurse 7)
Another nurse, when asked about radiation exposure, shared that she is out of the child-bearing age, so
she does not feel at risk. “I’m done having kids. I mean I know it's a general cancer risk, but no, I don’t”
(Nurse 3).
Discussion
This research sought to describe the experience of nurses providing care for children with neuroblastoma in
single-room isolation for 131I-MIBG therapy. Nurses in this study overwhelmingly described a sense of
being simultaneously isolated from the patient. Due to radiation safety precautions, parents provided most of
the care and interactions with the child. The nurses had less contact with the children, causing feelings of
disconnect and frustration that they were unable to be with their patients more. The nurses described a great
contrast from their usual pediatric oncology patients, who are more significantly acute and require frequent
monitoring and interventions. Nurses who care for pediatric oncology and stem cell transplant patients
typically have a strong connection with the children (Conway et al., 2017; Morrison & Morris, 2017).
Nurses, parents, and pediatric oncology patients in multiple studies have described the importance of nurses’
presence for patients and families (Mcharo et al., 2022). They describe nursing presence not only as a
physical presence but also as an emotional connection developed through open/honest and empathetic
communications and non-verbal communications of support (Mcharo et al., 2022). Due to radiation safety
precautions during 131I-MIBG therapy, the nurses in this study felt hindered to offer the level of presence for
the child as they would have wanted; this situation created a sense of not doing “that much” and isolation
from the child. Similarly, the pediatric oncology nurses in Hopia and Heino-Tolonen's study (2019)
described feelings of inadequacy when experiencing time constraints that limited their ability to support a
patient.
Because of the shift in responsibilities from the nurse to the parents, the nurses’ 131I-MIBG experience
was defined by the extent of parental engagement. Nurses shared that those families taking a more active
role in caring for the child, without needing to be prompted, created a more collaborative and positive
experience with the nurses. These findings are consistent with Sundal and Vatne (2020), who reported that
two characteristics identified between the parents of hospitalized children and their nurses were flexibility
and sharing of responsibility and tasks. The relationship between the nurses and parents was dependent upon
each other maintaining their responsibilities, with the nurses focused on the medical care and the parents on
the home-like care (Sundal & Vatne, 2020). Because nurses in this study of 131I-MIBG therapy had to rely
on the parents to complete additional responsibilities that are traditionally held by nurses in inpatient
settings, the delineation of roles was especially important to define and added to the collaborative effort.
Sundal and Vatne (2020) also found that nurses took the initiative to organize the care but that a precondition
for ideal collaboration was the parent's presence, familiarity, and connection with the child. Likewise,
participants in this study described a positive nursing experience when parents were not only engaged in the
physical tasks of patient care but also interacting regularly with and creating positive experiences for the
child.
Participation in care and collaboration between patients, families, and healthcare practitioners are two
important concepts of the patient-and family-centered care model (Institute for Patient- and Family-Centered
Care, n.d.). When parents perceive services are more family-centered, they also report greater psychological
well-being and increased self-efficacy to accomplish tasks/situations for their child's healthcare and to
address parenting challenges (Salvador et al., 2019). While nurses in this study were limited in their time to
be present with the child, they were still able to be fully present for the parents. Nursing presence is
proposed by multiple past investigators to be foundational to family-centered care (Mcharo et al., 2022). By
creating meaningful connections with parents through their presence, pediatric oncology nurses offer support
during times of stress and form a partnership in the management of the child's care (Mcharo et al., 2022).
Findings from this research suggest that in enhancing parental self-efficacy, participation, and collaboration,
the benefits of a family-centered approach also extend to nurses, creating a more positive professional
experience and perhaps offsetting some of the frustrations encountered due to limited physical presence with
the child.
Most of the nurses in this study described feeling prepared to care for children receiving 131I-MIBG
therapy. However, they overwhelmingly reported that their comfort level waned if they had not seen this
treatment over time and shared some anxiety with the first patient experience. The nurses reported being
prepared through a radiation safety presentation and the requirement of an online module but did not report
formal ongoing training or hands-on/simulated practice of skills for this lower-volume population. When
caring for a patient after a lapse of time, the nurses relied on bedside informational resources and their
colleagues (research nurse, nurse colleagues, radiation safety team) for just-in-time clinical support. Past
research, though minimal, suggests deficits in inpatient nurses’ knowledge regarding radiation and radiation
safety (Badawy et al., 2016; Dauer et al., 2006). As a result, investigators suggest that training be offered
upon hire and that regular refreshers be made available (Badawy et al., 2016). In situ nursing simulation, or
simulation that occurs within the work environment, is shown to strengthen and maintain competency
(Hersey et al., 2020; Sage-Rockoff et al., 2019). With in situ simulation, the team can assess knowledge and
identify processes and workflow (Shah et al., 2020). This education methodology may be especially helpful
in the case of single-room isolation for radiotherapy, in which the patient care environment and radiation
precautions are different from usual care. In situ simulation can include all members of the team who care
for 131I-MIBG patients and can be used as initial competency or as a refresher, helping to build nurse
confidence level (Lee et al., 2019).
Although radiation exposure to the caregiver has been shown to be low and within safe ranges (Gains et
al., 2015; Han et al., 2017), several nurses in this study reported reservations when caring for children
receiving 131I-MIBG. The concern was shared by female nurses, more often of child-bearing age. Minimal
research has been conducted regarding pediatric oncology nurses’ perceptions of risk in caring for patients
receiving radiotherapy. Dauer et al. (2006) examined the effectiveness of a radiation safety training program
for inpatient oncology nurses; while the nurses demonstrated increased knowledge and more positive
attitudes regarding their own safety and organizational policies/precautions following training, they did not
feel any safer to have a child (Dauer et al., 2006). A parent of a child receiving 131I-MIBG in the larger study
affiliated with this report, described apprehension of some nurses to enter the child's room, presumably due
to radiation exposure concerns (LaFond et al., 2022). Further investigation into this topic is warranted, as
nurses’ perceptions of radiation safety may affect their interactions and support of patients and families
during 131I-MIBG therapy.
Strengths and Limitations

Several strengths were noted throughout this study. First, we gained the perspectives of the nurses caring for
children receiving this infrequent therapy, which has not been previously reported. With inpatient pediatric
oncology nurses being positioned to support the family through 131I-MIBG therapy, understanding their
experiences will help to inform the care received by children with neuroblastoma and their families. Another
strength is that nurses were interviewed within 3 weeks of caring for a child who received 131I-MIBG
therapy, so the experiences were recent when data were collected. Data saturation was also reached for this
qualitative study (Braun & Clarke, 2019; Fusch & Ness, 2015).
A limitation of this single-site study is that 131I-MIBG programs throughout the United States may vary
by state regulations, patient volumes, nurse education and preparation and physical set up of the room. With
these variations likely impacting the overall nurse experience, additional research exploring the relationship
between these different contexts is needed to generalize the findings and optimize the 131I-MIBG therapy
experience. Further research comparing 131I-MIBG programs will help to optimize the experience for the
nurses, families, and children with neuroblastoma by collaborating on best practices.
Implications for Practice and Future Research

Caring for children receiving 131I-MIBG therapy is a complex process that disrupts usual inpatient care for
nurses; our findings suggest the importance of a collaborative and therapeutic relationship between nurses
and parents. Although families are screened prior to being offered 131I-MIBG therapy as a treatment option,
they may have personal challenges that complicate the care while the child is hospitalized. Nurses should
receive coaching and mentorship to help promote collaboration with the family and strategize on how to
engage a family that is struggling with caring for their child during single-room isolation. Applying the
family-centered care model to this patient population would strengthen the care and should also be studied as
a primary approach to support families during this therapy. With the low volume of this treatment for
neuroblastoma, more research is needed to evaluate the effects of in situ simulation for initial and ongoing
competency, to help support nurse confidence, and to decrease anxiety levels. Additional research is also
needed to explore pediatric nurses’ radiation concerns, the impact of nurses’ concerns on their ability to be
present and deliver family-centered care, and to determine best practices to address concerns of occupational
radiation exposure. Future research should also involve a multi-center approach to draw upon best practices
and standardize the care being provided during 131I-MIBG therapy. With continued research efforts to
improve the experience of 131I-MIBG therapy, children with neuroblastoma and their families will be
offered the best collaborative approach to caring for these children.
Author Note
Study findings were presented at the 2019 Midwest Nursing Research Society conference in Kansas City, MO, and also
as a poster at the University of Chicago Nursing Research Conference in the fall of 2019.
Acknowledgments
We would also like to thank the nurses that participated in this study and to the rest of the multidisciplinary team for their
continued effort and dedication to provide the best care to pediatric oncology patients and their families (Dr. Susan Cohn
and Dr. Ami Desai; Melissa Marx and the CRA Team; Nuclear Medicine Department; Radiation Safety Department;
Catherine Vincent, PhD, RN; and the Pediatric Sedation Team).

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 support for the research, authorship, and/or publication of this
article: This work was supported by the DAISY Foundation.
ORCID iD
Cynthia M. LaFond https://orcid.org/0000-0002-0930-6394
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20/12/2023, 14:32 The Experience of Children With Neuroblastoma and Their Parents During Single-Room Isolation for 131I-Metaiodobenzylgu…
Journal of Pediatric Hematology/Oncology Nursing

Volume 39, Issue 5, September 2022, Pages 304-316
Research
The Experience of Children With Neuroblastoma and Their Parents

During Single-Room Isolation for 131I-Metaiodobenzylguanidine
Therapy: A Qualitative Descriptive Study
1,2,
Cynthia M. LaFond, PhD, RN, CCRN-K Alyssa Yost, BSN, RN 3,4, Kelly Lankin, PhD, RN,
CCRN-K 5, Megha Kilaru, MPH 6, and Susan L. Cohn, MD 4
Abstract
Background: Administration of 131I-metaiodobenzylguanidine (131I-MIBG) for neuroblastoma requires
hospitalization in single-room isolation and limits caregiver physical contact due to the child's radioactive
burden. Though used for decades, there is a dearth of research on the experiences of children and their
parents while isolated. Methods: This qualitative descriptive study evaluated the experience of children with
neuroblastoma undergoing single-room isolation for 131I-MIBG therapy and their parents. Ten nurses, nine
parents, and five children were interviewed; transcripts were analyzed applying a conventional content
analysis approach. Results: Child themes included overall experiences ranging from positive to negative;
emotional stress was common; symptoms were common but mostly managed; the children were adequately
prepared for isolation; and audiovisual technology and entertainment helped. The indwelling urinary catheter
was a source of emotional stress and/or pain for several children. Parent themes included I thought it was
going to be a lot worse; it gets better with time; feeling concerned and overwhelmed; prepared as much as
you can be; and you feel like you’re not alone. Discussion: Findings suggest that children and parents would
benefit from additional coping support interventions to address emotional distress. Efforts should be made to
identify other sources of technology or room designs that can maximize the child's sense of connection with
parents and healthcare professionals. Additional research is needed to examine the impact of this isolation
experience on the long-term psychological outcomes of children and parents.
Keywords
Metaiodobenzylguanidine (MIBG), child experience, pediatric, emotional distress, radiotherapy
1 Professional Nursing Practice, Rush University Medical Center, Chicago, IL, USA
2 Nursing Research, University of Chicago Medicine, Chicago, IL, USA
3 Section of Hematology/Oncology & Stem Cell Transplantation, University of Chicago Medicine Comer Children's Hospital, Chicago,
IL, USA
4 Department of Pediatrics, University of Chicago, Chicago, IL, USA
5 ClinicalProfessional Practice, University of Chicago Medicine, Chicago, IL, USA
6 Center for Healthcare Delivery Science & Innovation, University of Chicago Medicine, Chicago, IL, USA
Cynthia M. LaFond, PhD, RN, CCRN-K, Nurse Scientist, University of Chicago Medicine, 5841 S. Maryland Ave, Chicago, IL 60637,
USA. Email: Cynthia.lafond@uchospitals.edu
Introduction
Neuroblastoma, a cancer of the sympathetic nervous system, accounts for 6% of pediatric cancer cases in the
United States and is the most common extra-cranial tumor in children (Rufini et al., 2015; Siegel et al.,
2020). While outcomes for children with low-risk neuroblastoma are promising, relapse is common for
patients classified as high-risk (Pinto et al., 2015; Whittle et al., 2017) and their estimated five-year survival
is 46% (Coughlan et al., 2017). Accordingly, approaches for treatments are based on risk, with patients at
high-risk receiving more intensive multi-modal therapy including induction (chemotherapy and surgery),
consolidation (high-dose chemotherapy, autologous hematopoietic stem-cell rescue and radiotherapy), and
postconsolidation (immunotherapy regimen) therapies (Coughlan et al., 2017; Pinto et al., 2015).
131I-metaiodobenzylguanidine (131I-MIBG) is a radiotherapy that has been used as a primary and
adjunctive therapy in clinical research trials for patients with newly diagnosed high-risk neuroblastoma and
relapsed or refractory neuroblastoma (Breneman et al., 2018; Sharp et al., 2016). When 131I-MIBG is
administered, the children are hospitalized in single-room isolation, typically in a dedicated lead-lined room,
for four to six days due to the child's radioactive burden and risk of radiation exposure to caregivers (Rufini
et al., 2016). Because 131I-MIBG is almost entirely excreted in urine, placement of an indwelling urinary
catheter is standard during hospitalization for bladder protection and safety of the children's caregivers
(DuBois et al., 2015; DuBois & Matthay, 2008).
As a result of radiation precautions, usual hospital practices are disrupted; visitors are generally not
allowed and caregivers must limit physical contact with the child until the child's levels of radiation
decrease. Parents often stay in a separate room with video monitoring or a leaded glass window (Agrawal et
al., 2018). Due to the risk of exposure caring for patients over time, nurses are limited to as few as 30 min
per day with the children. Thus, parents take on responsibilities such as draining the urinary catheter bag,
administering oral medications, and providing hygiene care (Sharp et al., 2016).
Even though this radiotherapy has been used for over three decades, there is a dearth of research on the
experiences of children and their parents during single-room isolation. Authors of discussion papers and
publications outlining 131I-MIBG program development suggest the children and family experience
heightened stress and anxiety related to the admission and isolation (Chu et al., 2016; Lessig, 2009). In
addition to being separated from others, the children's usual comfort items such as a favorite blanket or toy
may be restricted from the room due to risk of contamination (Shusterman et al., 2011). The children may
also be affected by symptoms from treatment. While 131I-MIBG is often well tolerated, nausea and vomiting
can occur from acute radiation gastritis in the first hours to days of treatment (Agrawal et al., 2018).
Research regarding the experience of children in single-room isolation for other reasons (e.g., infection
prevention) is also limited. Much of the research was conducted over 20 years ago and few studies included
perspectives of the children (Alvarez et al., 2020; Austin et al., 2013). However, findings from studies with
adult and pediatric patients in isolation for infection prevention (protective precautions or transmission
precautions) suggest emotional distress is present (Alvarez et al., 2020; Austin et al., 2013; Gammon &
Hunt, 2018). Children with cancer, autoimmune disorders, and infectious diseases have expressed sadness,
loneliness, and fearfulness, and their parents have expressed anxiety, stress, and loneliness while isolated for
infection prevention (Alvarez et al., 2020; Austin et al., 2013). Yet, isolation for infection differs from 131I-
MIBG therapy in that caregivers are permitted to be at the children's bedside without time restrictions.
Consequently, findings from research of isolation for infection may have key differences. For example,
reduced time in the room during 131I-MIBG therapy could impact nurses’ detection of behavioral cues of
pain or nausea in children who are hesitant or have less ability to articulate discomforts.
Thus, the aim of this qualitative study was to describe the experience of children undergoing 131I-MIBG
therapy and their parents. We sought to identify the emotional stressors and symptoms experienced by
children during single-room isolation and the actions that assisted with coping. We also evaluated the
parents’ experience, preparation for their child's isolation, and actions identified as supportive.
Methods
Setting and Sample
This qualitative descriptive research was conducted at University of Chicago Comer Children's Hospital.
Eligible subjects included English-speaking children with neuroblastoma admitted for 131I-MIBG
therapy, parents/guardians acting as caretakers during the therapy, and pediatric inpatient oncology nurses.
Children between the ages of 4 and 18 years old were included. Children under the age of 4 years old were
excluded, but their parents were still eligible for participation. Nurses were included if they provided care to
a child who received pediatric patient 131I-MIBG therapy within the past three weeks.
A projected sample size of 30 (10 each of children, parents, and nurses) was anticipated to be sufficient
to obtain information-rich data (Hennink et al., 2017) and to allow for maximal variation in participant
attributes (Patton, 2014). Multiple perspectives were included to obtain a more complete understanding of
the patient and parent experience and to triangulate findings (Patton, 2014). Nurses were included because
along with parents, they provide the most direct care to the children during isolation (Shusterman et al.,
2011). Nurses assess and intervene for patient symptoms and emotional distress, and offer support to parents
during the admission. As such, nurses’ clinical perspectives were important to comprehensively address the
study aims.
Procedures
Institutional Review Board approval was obtained, IRB14-1192. The 131I-MIBG research nurse recruited
parents and children during a scheduled outpatient appointment prior to admission for 131I-MIBG therapy.
Parents and nurses provided consent, and upon parental permission, assent was obtained from the children.
All consents and assents were obtained just prior to the interview. Parents were interviewed in a room
separate from their child, just prior to the child's hospital discharge. Parents were interviewed again in
person during a follow-up outpatient appointment two to three weeks later, or by phone, if their child's
follow-up care occurred at another institution. The children provided assent and were interviewed in-person
at the follow-up appointment two to three weeks following therapy once radiation restrictions were lifted.
Parents were present in the room with the children during the interview and were coached prior to the
interview to refrain from contributing to the discussion. Nurses were recruited by flyer and email following
the admission of a patient for 131I-MIBG therapy and were interviewed in-person no later than three weeks
from caring for a patient. Subjects were compensated for their participation in each interview with a $20.00
gift card and personalized letter of thanks. Experienced PhD-prepared qualitative researchers, not involved
in the clinical care of the patients, conducted the interviews and took field notes. The interviews were audio
recorded, transcribed verbatim, and checked for accuracy by study personnel.
Measures
Five semi-structured interview guides were developed for this research for interviewing (1) children ages 4–
7 years old, (2) children 8 years old or older, (3) first parent interview during hospitalization, (4) second
parent interview within three weeks of hospital discharge, and (5) staff nurses (see Table 1 for sample
questions). Prior to initiating the study, we consulted three oncology staff nurses with experience caring for
children receiving 131I-MIBG therapy. They reviewed the interview guides, provided feedback regarding
content and clarity of the questions, and made recommendations for additional questions. Additionally, we
consulted with certified Child Life Specialists to incorporate child-friendly methods of conducting
interviews and to adapt our interview guides for children of varying stages of development.
The research team developed child, parent, and nurse demographic instruments. Child information included
age, gender, race/ethnicity, whether the child's neuroblastoma was relapsed/refractory, and whether this was
the child's first 131I-MIBG treatment. Parent items included age, race, gender, race/ethnicity, marital status,
occupation, highest education, whether the child's neuroblastoma was relapsed/refractory, and whether this
was a first 131I-MIBG treatment. Nurse demographics included gender, race/ethnicity, nursing experience,
nursing education, nursing specialty certification, primary shift worked, and number of patients receiving
131I-MIBG treatment in the past 6 months.
Analysis
Transcripts of the interviews were analyzed for key concepts using conventional qualitative content analysis
(Hsieh & Shannon, 2005) and N-Vivo 12 qualitative software. Study team members (CL, KL, and AK)
independently coded a subset of transcripts and then met to review and come to a consensus upon initial
themes and subthemes. All subsequent interviews were coded independently by the principal investigator
(CL) and another team member (KL or AK). Bi-weekly meetings occurred to discuss new themes/subthemes
and to resolve discrepancies in coding. Matrices were created to examine themes within and across
participant groups.
Results
Five children, nine parents, and 10 nurses participated in an interview. Eight parents completed a second
interview after their child's radiation restrictions were lifted. Participant demographic, clinical, and
professional information is provided in Table 2. The children who were interviewed ranged in age from 6 to
12 years old and were all admitted for their first 131I-MIBG admission. The parents were primarily married
females with a child with relapsed/refractory neuroblastoma. For six parents, this was their child's first
experience receiving 131I-MIBG. The participating nurses had a wide range of pediatric oncology experience
(5 months to 35 years) and reported providing care for one to three children who received 131I-MIBG in the
past 6 months. Six nurses described caring for a patient during the first day of single-room isolation. No new
themes were identified for the last two subjects or more per group (child, parent, and nurse).
Child Experience
For the children's experience, several themes emerged: an overall experience ranging from positive to
negative; emotional distress was common; symptoms were common but mostly managed; the children were
adequately prepared for isolation; and audiovisual technology and entertainment helped. Theme descriptions
with exemplar quotes are provided in Table 3.
Child Overall Experience: Ranging From Positive to Negative. While the circumstances for the children to
be in single-room isolation were similar, their experiences were wide-ranging, from positive or acceptable,
to negative. A mother who described her child's experience as positive stated, “I think he got a break from
parents, and nurses, and doctors. This is probably a vacation for him. Yeah, he really has not had a single
complaint.” Participants describing an acceptable experience used words such as “fine” or “pretty fair.”
Negative experiences described by children ranged from “boring” to sharing that everything about the
experience was “terrible.” Parents and nurses described the children's overall experience as dependent upon
different factors, including the child's personality; age and development; interests; state of health; and past
experiences with hospitalizations, medical devices, and medications. One parent best summarized this idea:
I know every kid, different ages, and boy, girl, they’re probably all gonna have different experiences in there. It's
hard to say that our experience was—we do things one way, and that's gonna—it's not universal at all. One thing
that is universal is the patient experience. You’re stuck and isolated in a bed for several days in a row.
As such, parents and nurses commonly identified separation as a challenging part of the children's overall
experience. When asked what it was like to be alone in the room one boy stated, “It was wearying. [I] wasn’t
used to it.” A mother similarly explained that her daughter was used to having treatments, but was not used
to being away from her parents:
It's a scary thing for a child to have to go through, especially one that's sick. They’re afraid to be alone. They
don’t like being secluded. They’ve been shut off from everybody for so much. This is a big thing. This kind of
blows it out of the water.
Several parents and nurses described a child's experience as improving over time. Parents described a
turning point for their child as restrictions were lifted, such as a door was allowed to remain open or parents
could stay in the room longer. “Once those doors open you see a totally different kid.” Likewise, nurses
identified that the first hours to days of single-room isolation posed the greatest challenges for the children.
Descriptions of the children's overall experience were generally consistent. However, a variation by
subject group and two cases of divergence between parent and child dyads was identified. Parents and nurses
more often described the children's overall experience as acceptable or positive, but also shared challenging
aspects of the single-room isolation. For example, though one nurse described a child's experience as overall
“okay,” she simultaneously recognized that being alone and “stuck in the room” was difficult for the child.
The children more often described their overall experience negatively and at times described a positive
aspect of the admission (e.g., using the walkie-talkies). None of the children described their overall
experience as positive. Further, a divergence was present for the two children described by their parents as
having an overall positive experience including “easy” and “probably a vacation for him.” These two
children described their experience in single-room isolation negatively, stating it was “terrible” and like
being “stuck in a cage.”
Emotional Stress was Common. Most of the subjects described negative emotions or displays of emotional
stress by the children during isolation (see Table 3 for themes and code exemplars). Fear and anxiety were
most often described. Similar to the child's overall experience, the extent of the emotional stress ranged
substantially, from no fear or anxiety, some emotional stress but easily distracted, moderate anxiety and/or
fear, to children who were “very anxious” and one child who was “very angry.” Behaviors of children
expressing anxiety and fear included crying, not sleeping or eating, irritability, and trying to get out of bed.
Anxiety was often attributed to separation, but was also described in response to hospitalization in
general, an unknown treatment, taking “icky” tasting oral medications, or experiencing symptoms. The
urinary catheter was a source of emotional stress for three children. Two children were described as having
fear/anxiety related to the catheter, with guarding of the device and limited movements in bed; for one of
these children, the fear was attributed to painful bladder spasms that resolved with pharmacological
treatment. The third child was described as “very angry” by the catheter's presence, as she did not fully
understand prior to admission that the catheter would remain inserted for most of the hospitalization. In
contrasting past patients, two nurses described differences in emotional stress exhibited by child age, “the
lesser the age … the more fear is there.” Notably, the two parents who denied seeing emotional stress in their
child are the same parents who described their child as having an overall positive experience, which was
divergent from the child's negative description.
Symptoms Were Common but Mostly Managed. Symptoms reported included pain, nausea/vomiting, and
fatigue. The majority of interviewees reported pain/discomfort or nausea and vomiting was present during
hospitalization. All parents and children reported at least one symptom. Nurses did not always recount a
child with symptoms and acknowledged that while symptom-free for their shift(s), the child may have had
symptoms at a different point in the hospitalization.
Pain. Of the three children who reported pain, two described mild discomfort from the indwelling
urinary catheter and one reported arriving to the hospital with back pain that went away in “a couple of
days.” Nurse and parent reports of a child's pain during hospitalization were convergent and included
discomfort from the urinary catheter (n = 4) and parotitis (n = 1) that resolved with sour candy. Pain from
the urinary catheter ranged from mild “feeling funny” or “tender” to more moderate pain from bladder
spasms. Pain from spasms was reported to resolve with pharmacological treatment. Parents of the four
children who arrived with disease pain described substantial improvement or complete relief of the pain
following treatment. One child's mobility improved as disease pain resolved, allowing independent
ambulation at home.
Nausea and/or Vomiting. Six children were reported to experience nausea and/or vomiting. Four
children had a single episode of emesis that resolved with treatment, one child had nausea and vomiting “the
whole time,” another child experienced nausea only, which parents reported to be usual with any
hospitalization. Parent responses of nausea and/or vomiting were consistent with the children. Only three
nurses reported a child who experienced nausea or vomiting during their shift(s).
Fatigue. Three children were described by parents as fatigued, ranging from “a little more tired” to
“really tired.” One child was described as having lost strength and mobility, attributed to bed-rest. No
children or nurses described fatigue as a symptom.
The Children Were Adequately Prepared for Isolation. The majority of interviewees described the children
as prepared for the experience and provided examples of how the children were prepared. Methods to
prepare the children most often included providing information in a developmentally appropriate manner and
answering questions. Physical preparation was also described, such as getting to see the treatment room in
the hospital in advance and changing sleeping arrangements at home before treatment (child sleeping in bed
by self, separate room). One parent described preparing her child to be by himself in the weeks leading up to
treatment, “We’ll tell him we’re gonna go outside … while he stays inside. Just giving him little moments of
time by himself.” No participants described themselves/a child as “not prepared” for the single-room
isolation, however, some parents described a child as not fully comprehending aspects of the hospitalization
(e.g., the urinary catheter).
Child Support: Audiovisual Technology and Entertainment Helped. The children, parents, and nurses
described supportive actions as actions that decreased the children's sense of separation from others and
distracted the children from the situation. An electronic device often enabled this support.
Visualization/Communication With Others. The majority of participants described electronics as a
helpful method of visualization and communication with parents/caregivers at the hospital and others were
unable to be present. The electronics included a monitor in the child's room, walkie-talkies, and tablets for
video chat. One parent stated the walkie-talkies were a “lifesaver … because when she couldn’t see us, she
knew that she could at least talk to us whenever she wanted to.” The technology in the room was also
positively described by children, including “cool” and “I love the walkie-talkies in that room.” While all
parents and children appreciated the technology available, two parents and one nurse expressed a need for
additional capabilities for the children to see parents at all times. In addition to the electronics, nurses and
parents identified having someone in the child's room or visible to the child through an open door as helpful,
especially if the child was displaying emotional stress.
Entertainment/Games. Activities such as video games, movies, and coloring books, were described by
all subject groups as helpful in supporting the children. The tablets were especially helpful as they allowed
the children to play games, watch videos, and communicate with family. When asked if anything made a
negative experience better (e.g., being scared), three children described the “stuff” or devices they had in the
room. One child reported nothing made the negative experience better.
Additional Sources of Support. Hospital Staff. Parents also described support coming from nursing staff,
especially those who know their child well, and radiation safety staff who helped to calm or distract the child
during isolation. While child life specialists were unable to be in the room with the children, they were
acknowledged for providing games or toys specific to the child's interests. Two nurses described their own
actions to support a child, such as staying in the room a little longer earlier in the shift to calm a child who
was upset.
Parent Engagement. Parents and nurses described the important role of the parent in creating a positive
experience for the children. Engaged parents were described as being ever present for the child:
communicating with technology, coming into the room when their child was upset, and sitting outside the
room when the door could be opened. The parents often orchestrated support, providing the child new
surprise activities throughout the stay, and offering small comforts from home (favorite foods, special linen).
One nurse stated, “I’ve never experienced any of these patients where their parents were not 100,000 percent
[involved] in their care.”
Parent Experience
Themes regarding the experience of parents were identified from parent and nurse interviews. Themes and
subthemes included: I thought it was going to be a lot worse; it gets better with time; feeling concerned and
overwhelmed; prepared “as much as you can be”; and parental support “you feel like you’re not alone.”
Parent Overall Experience: I Thought it was Going to be a lot Worse and it Gets Better With Time. Two
themes were identified in the parents’ description of their overall experience. Five parents reported their
experience as being better than what they anticipated, using words such as “went smoother” or “better” than
they thought. Other parents inferred that the idea of the treatment was scarier than the actual event. “I could
say that going into it was far more scary than actually being in it. Going through the experience wasn’t that
bad.” Five parents described their experience as improving over time. Three of these parents identified the
first day or two of isolation most difficult “it gets better with time. I think the first couple days are the most
strenuous.” The parents also described developing a routine, which made the experience eventually easier.
Feeling Worried, Overwhelmed. Concerns related to the admission were present for the majority (n =
7) of the parents and contributed to the parents’ overall experience. “Fear of the unknown” was expressed—
not knowing how their child would do during treatment, being new to the institution/entrusting their child's
care to a team they didn’t know, and taking on additional responsibilities of the child's care. One parent
stated, “I was really worried about the urine part, but it turned out to be fine.” Concerns regarding exposing
the child to radiation or the circumstances of the child's need for treatment were also described. One parent
shared, worrying about “Will this work?” and “What if I can't console my child?” Four of the parents also
described feeling “overwhelmed” going into the experience. “… we were also very overwhelmed. This is my
child and this is what we’re going to do to my child. What we’re doing to my child can harm me.” Two
nurses described the visible “emotional toll” or “stress” of treatment and separation on a parent.
Prepared as Much as you can be. All parents described preparing for 131I-MIBG therapy through
information. Sources of information included hospital-based informational materials and training with staff,
websites, social media, and other parents with a child who received 131I-MIBG therapy. While parents in our
study said they were intellectually or “mentally” prepared for this hospitalization, they did not always feel
emotionally prepared. When discussing hospital-based training, one parent described this additional need
“Preparing yourself from a mother's standpoint, it really didn't cover that.” The parents did not identify what
more could have been done to prepare them for this aspect of hospital admission. One parent described being
prepared “as much as you can be” and another started “… they did as much as they could … I don't think
anybody can really be prepared for that.”
All nurses affirmed that the parents of their most recent patient were prepared to take on the additional
responsibilities. The nurses offered examples of parents initiating care, asking for clarification or
troubleshooting, and reminding the nurse of the child's needs. Three nurses described challenges with past
caregivers who needed ongoing prompts to complete their responsibilities or who demonstrated a lack of
knowledge regarding the treatment, risks, and associated responsibilities. One nurse described her
perspective regarding the parent's emotional state and preparedness for 131I-MIBG:
This mom seemed well prepared and understanding what was going on. I’ve seen others that are a little more
emotional about it, a little more nervous about it. Sometimes I think it's more the level of functioning of the
parents than—intellectual level, that they understand it a little better.
Parental Support: You Feel Like You’re not Alone. The parents described multiple sources of support, both
external to and within the hospital setting. External sources of support included friends and family and social
media groups. Seven of the nine parents described family and friends as being helpful—assisting with care
of the child's siblings at home, partnering with a parent to provide care of the child during 131I-MIBG
therapy, calling with offers of help and messages of spiritual support, and reminding the parent of need for
self-care. One mother stated:
We have a huge support group back at home of people that are willing to take care of the other kids on just a
phone call. People that are willing to bring stuff to the house, activities … They let us know every day—the
phone goes off and it's just a little note of, “Hey, I’m praying for you. Do you need anything? Can I help in any
way?” which is huge … I think that it's comforting to know that you’re not by yourself. This isn’t you in a room.
Your child's in a room, and you’re all by yourself, that there are people pulling for you. There are people
advocating to God for you. That was huge for us.
Social media similarly provided a source of comfort to parents, providing them messages of emotional and
spiritual support, and allowing them to connect with other parents of children with neuroblastoma. One
parent stated, “Every night I would update the Care page. Then every morning I’d read all the comments and
then you see how many people are praying … It's a relief. You feel like you’re not alone.” Another parent
described his experience connecting with another family on Facebook and watching their daughter's infusion
live prior to his child's infusion, “you know what, after seeing that, and this girl was younger than [our
child], it was very uneventful and not really that big of a deal … It took a lot of the stress off of my
shoulders.”
Hospital staff, including nurses, radiation safety personnel, physicians, and child life specialists were
identified as supportive to the parents. Nurses were most frequently mentioned by parents; their supportive
actions included coordinating and reinforcing care responsibilities; checking in on the parents, intervening if
the child became upset; and providing a break/encouraging parental self-care. One mother stated, “Whether
it's the doctors, the nurses, Child Life, they always come in and they always see how you’re doing … Really,
that helps a lot. It makes you feel not as alone, going through all of this.” Conversely, two parents noted
situations where they did not feel as supported by staff, one parent perceived apprehension of some nurses to
enter the child's room and another parent described feeling isolated by the location of the room, experiencing
delays in reaching staff at night as a result. One nurse described how she supported a parent:
The mom had the 2:00 in the morning one [medication], and she said, “Do you mind,” she said to me can I just
be in the anteroom, she just wanted that support, which was fine. The dad was very independent. Different
personalities. He just did his own thing, did it appropriately, but mom I think just wanted that. I just stayed with
her in the anteroom and she did everything fine. She just wanted to know someone else was there.
Discussion
This qualitative descriptive study evaluated the experience of children undergoing 131I-MIBG therapy and
their caregivers. Our findings suggest that the children's overall experience and expression of emotional
stress varied widely, from a satisfactory experience and minimal emotional stress to a negative experience
and substantial stress. For most children, symptoms of nausea/vomiting and pain were present but managed.
Similarities among the children included adequate preparation for the physical separation, and support via
audio-visual technology and play activities.
It is not surprising that most children in our study used negative terms to describe their experience;
hospitalized children with cancer report social isolation, physical burden from treatments,
interruptions/inconveniences, and negative surroundings (Linder & Seitz, 2017). This negative experience is
undoubtedly heightened by the additional restrictions placed on family members’ ability to be near the
children during 131I-MIBG therapy. The variability of emotional stress the children expressed is consistent
with past research that suggests cancer-related distress is affected by many factors, including characteristics
of the individual child and the social and medical environment (Bakula et al., 2019; Bemis et al., 2015;
Linder & Seitz, 2017; Monti et al., 2017; Trentacosta et al., 2016). Hospital design (e.g., layout,
accommodations, lighting, and appearance of rooms and other spaces) has been associated with child and
parent experience, including decreased anxiety in children and greater restorative experiences for children
and parents (Cartland et al., 2018). Congruently, one parent in our study identified the location of the patient
room as further isolating them from nursing support. Chu et al. (2016) successfully piloted parental presence
in the child's room during 131I-MIBG therapy, without excessive radiation exposure to parents or healthcare
professionals. Multi-site research is warranted to examine how room and unit design (proximity of parent
accommodations, presence of windows, décor, technology, etc.) may improve the parent and child
experience during single-room isolation.
Two children in our study, who were perceived by their parents to have had a positive overall experience,
described a negative experience. Poor agreement between parents and children regarding the child's
symptoms and psychological stress has been described in the pediatric oncology population (Mack et al.,
2020; Tomlinson et al., 2021). Reasons for disagreements are multifactorial, and can include parent
characteristics (e.g., parents’ own health), child characteristics (e.g., gender), differing perceptions or
expectations, ability to observe the symptom/distress, and lack of communication, among other reasons
(Mack et al., 2020; Tomlinson et al., 2021). It is likely that because the parents in our study did not see signs
of emotional stress, the children were presumed to have had a positive experience. Our findings suggest
parents and nurses may benefit from coaching on how to engage a child in conversations about their
emotional state, to better identify children who require further intervention.
The indwelling urinary catheter was a common source of discomfort and/or emotional stress and was a
difficult aspect of hospitalization for a younger child to comprehend. There is insufficient literature
regarding urinary catheter-related pain and bladder discomfort in children. In adults, catheter-related
discomfort can be distressing and contribute to agitation (Bach et al., 2020). Reduced catheter size and
balloon volume are proposed to improve tolerance to the indwelling catheter (Bach et al., 2020; Zugail et al.,
2019). Because this device is considered standard of care to reduce radiation exposure during 131I-MIBG
therapy, research of interventions to prepare children for the ongoing presence of the catheter and to reduce
discomfort is needed.
Devices that allowed connection with others or provided distraction (i.e., walkie-talkies, tablets, and
video games) were commonly described as supportive for the children in our study. Gaming and mobile
technologies have become increasingly popular in pediatric oncology research, and are found to provide
enjoyable play experiences and have physical and psychological benefits for hospitalized children (Carrion-
Plaza et al., 2020; Jurdi et al., 2018). Different types of technology should be explored for use with children
during 131I-MIBG therapy. For example, a multiplayer modality may increase the child's sense of connection
with others (Jurdi et al., 2018). Virtual reality has also emerged as a promising intervention for improving
the emotional, cognitive, and physical well-being of patients with cancer (Zeng et al., 2019, Tennant et al.,
2020). Feasibility and usability of virtual reality for 131I-MIBG therapy should be explored, as less available
physical support from adults may be a barrier to use for this often-younger population.
The majority of parents in our study reported feeling worried and overwhelmed prior to their child's
hospitalization. They found education and social support helpful, but identified a need for further emotional
preparation. In a meta-analysis that included research with parents of children with cancer, educational,
social/structural support, and emotional regulation interventions were shown to reduce parent stress and
anxiety (Doupnik et al., 2017). Healthcare professionals should systematically incorporate more emotional
self-care interventions for parents in preparation for and during single-room isolation, as increased parental
distress is associated with increased child distress and poorer child quality of life in pediatric cancer (Bakula
et al., 2019; Bakula et al., 2020).
Study Limitations and Strengths

Limitations of this research include recruitment from a single center and a small sample of children who
were participants. Due to the number of children outside the eligible age range for this study and the number
of children receiving follow-up care out of state, we were unable to obtain our desired sample of child
participants or interview all parent–child dyads. Still, a redundancy in themes in each participant group was
achieved, likely due to our use of focused interviews and the concrete nature of information shared by the
children (Hennink et al., 2017). Our study does address two limitations of past single-room isolation
research: failure to include children in the research and conducting interviews with participants months after
the child's isolation occurred (Alvarez et al., 2020; Austin et al., 2013). Our findings are strengthened
through our procedures that included data and investigator triangulation (Patton, 2014).
Conclusion/Implications
This research is a first step in understanding the experience of children undergoing 131I-MIBG therapy for
neuroblastoma and their caregivers. Because the universal experience for the children is the time they must
spend by themselves in a hospital room, the children, parents, and nurses consistently described supportive
actions as actions that distract the children from the situation and decrease their sense of separation. Nurses
have an important role in supporting the children and their parents during isolation and have opportunity to
further integrate coping interventions into their care. Ongoing research efforts should be made to identify
additional technology or room design that can maximize the children's sense of connection with others.
Acknowledgments
This research was funded by a J. Patrick Barnes Research Grant, The DAISY Foundation. We would like to thank
Catherine Vincent for her mentorship and Caitlin Rocha, Jennie Ott, & Jennifer Loewy for sharing their clinical
expertise.

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this
article.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this
article: This work was supported by the DAISY Foundation (grant no. JPB-2014-54-A).
ORCID iD
Cynthia LaFond https://orcid.org/0000-0002-0930-6394
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Patient Education and Counseling 102 (2019) 275–283
Contents lists available at ScienceDirect
Patient Education and Counseling

journal homepage: www.elsevier.com/locate/pateducou
Review article
A systematic review of interventions to reduce psychological distress in

pediatric patients receiving radiation therapy
Moira O’Connora,* , Georgia KB Halkettb
a
School of Psychology, Faculty of Health Sciences, Curtin University, Australia
b
School of Nursing, Midwifery and Paramedicine, Faculty of Health Sciences, Curtin University, Australia
A R T I C L E I N F O A B S T R A C T
Article history: Objective: Radiation therapy (RT) is a cornerstone for management of pediatric cancer. For younger
Received 29 March 2018 patients, unintended radiation to critical organs is a concern and children need to remain immobile.
Received in revised form 21 September 2018 Distress in children is common so many centres sedate pediatric patients. Children often are unable to
Accepted 27 September 2018
remain still, due to anxiety. Interventions to reduce distress could also reduce sedation rates. The
objectives of this systematic review were to: review the interventions used to address pediatric RT
patients' distress and anxiety and assess their effectiveness.
Methods: A systematic search of qualitative and quantitative studies from 1996 to 2016 was conducted
using PRISMA guidelines. Nine articles were identified for inclusion in the final review. These articles
were reviewed using a quality rating.
Results: Participants included patients 19 years of age or younger, parents and RTs. All were single-site
studies. Five studies had a control group, 3 studies had no control group, and 1 study was qualitative.
Quality was not high. Six studies reported significant effects. Only one study reported group differences in
children's reported anxiety.
Conclusion: Cognitive behavioural approaches appear to be worth exploring further, as are approaches
grounded in child development. Therapeutic play, particularly procedural preparation via play, also
seems to be a useful starting point.
© 2018 Published by Elsevier B.V.
Contents
1. Introduction . . . . . . . . . . . . . . . . . . . . .... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 276

2. Aims . . . . . . . . . . . . . . . . . . . . . . . . . . .... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 276
3. Methods . . . . . . . . . . . . . . . . . . . . . . . .... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 276
3.1. Criteria for exclusion/inclusion ... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 276
3.2. Search strategy . . . . . . . . . . . . .... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 277
3.3. Screening . . . . . . . . . . . . . . . . . .... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 278
3.4. Data extraction and analysis . .... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 278
4. Findings . . . . . . . . . . . . . . . . . . . . . . . .... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 278
5. Discussion . . . . . . . . . . . . . . . . . . . . . . .... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 281
6. Conclusion . . . . . . . . . . . . . . . . . . . . . .... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 282
6.1. Clinical implications . . . . . . . . .... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 282
6.2. Limitations . . . . . . . . . . . . . . . .... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 282
Conflict of interest . . . . . . . . . . . . . . . .... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 282
Acknowledgements . . . . . . . . . . . . . . .... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 282
References . . . . . . . . . . . . . . . . . . . . . .... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 282
* Corresponding author at: Kent Street, Bentley, Perth, 6102, Western Australia,
Australia.
E-mail address: m.oconnor@curtin.edu.au (M. O’Connor).
https://doi.org/10.1016/j.pec.2018.09.023
0738-3991/© 2018 Published by Elsevier B.V.
276 M. O’Connor, G.K.B. Halkett / Patient Education and Counseling 102 (2019) 275–283
1. Introduction and decisions are usually based on a combination of physician

experience and the individual or physical characteristics of the
Radiation therapy is a cornerstone in the management of cancer child including airway management, cognitive function, emotional
in children [1,2]. This can be used as a primary therapy or in maturity, pain, and musculoskeletal deformities [20]. There is also
combination with surgery and/or chemotherapy [3]. External the need to consider indications of anxiety and fear arising from
beam radiation therapy involving high energy (megavoltage) the unfamiliar radiotherapy environment, previous medical
beams are commonly used in the treatment of many pediatric experiences, personality, and parental worries [18].
tumors. Radiation treatment is very precise, with accuracy planned McMullen et al. [20] have argued for the use of supports and
to be within millimeters of the tumor localization. Of major interventions to decrease child anxiety in order to deliver radiation
concern for younger patients is unintended radiation exposure to therapy without the administration of S/A, particularly in children
critical organs [4–7]. This factor, alongside the smaller size of older than 3 years of age. A range of non-medical alternative
pediatric patients and the potential for late effects from treatment, interventions have been reported to eliminate the need for GA.
means that there is a need to ensure the child remains immobile These include psycho-education, including the provision of age-
during the entire process while the treatment machine moves appropriate information to parents and children; behavioural
around them to deliver the treatment from different angles [8,9]. training, consisting of rewards for desired behaviour; preparation
Patients may be positioned on the bed with different immobiliza- and familiarisation with the environment and people, often with a
tion devices or may require an immobilization mask or personal- buddying system and meeting the team; music therapy; movie
ized mold if they are receiving treatment to their brain, for making, and therapeutic play often with a play life therapist, which
example. Curative treatment is commonly delivered over a period engages and distracts the child [6–8,29]. However, these vary
of 6–7 weeks requiring daily attendance five days a week for greatly in terms of approach and evaluation and are delivered on an
treatment in small doses. ad hoc basis. Research has been conducted with adult cancer
Reasons for children’s inability to comply with this necessity to populations to determine how psychological distress can be
remain immobile include a child’s temperament, previous medical reduced prior to radiotherapy treatment commencement [30–34],
experiences and parental expectations [10], along with anxiety and focussing on providing procedural and sensory information.
distress [11]. Although radiation therapy is a painless procedure, However, little research has been conducted with pediatric
acute distress in children is common [12,13]. When children patients despite good practice guidelines emphasising the
present for radiotherapy it may be the first time they have attended necessity for age appropriate preparation, communication and
an adult medical facility [14], where pediatric patients are a supports [29]. These guidelines highlight the need for broadening
minority [15], and the large treatment machines, sounds and psychosocial interventions in the radiation oncology setting [35].
stabilization devices may be perceived as alien [15,16]. Parental To determine what interventions and supports are available for
worry and anxiety frequently occurs [12], which has been pediatric RT patients to reduce psychosocial distress, a systematic
associated with anxiety in pediatric radiation therapy patients review was conducted.
[17]. Such distress and anxiety may result in the child moving or
being reluctant to co-operate [18,19]. As such, there is often a need 2. Aims
for sedation/anesthetic (S/A), usually a general anesthetic (GA).
Many centers routinely administer S/A to all pediatric patients The objectives of this systematic review were to: 1) review the
under 3 years of age, to approximately 50% of children aged 7–8 supports/interventions used to address the psychosocial distress
years, and to around 10% of children aged 13 years or older facing pediatric RT patients; and 2) assess the effectiveness of
[7,13,20,21]. This S/A is administered five days a week for a period these supports/interventions.
of six to seven weeks (i.e. approximately 30 daily visits) in order to
complete curative treatment regimes. 3. Methods
The decision to administer S/A adds a level of complexity to
treatment and a number of challenges. These include the This review complies with guidelines for Preferred Reporting
requirement for a central line to allow daily access to the patient Items for Systematic Reviews and Meta-Analyses (PRISMA) [36]
undergoing S/A, and daily manipulation of these venous access (See Fig. 1).
devices [1,20,22]. If the child is undergoing chemotherapy in
parallel with radiotherapy the child may have the line in situ with 3.1. Criteria for exclusion/inclusion
the potential for infection [23]. Daily fasting requirements can
adversely affect the dietary intake in already nutritionally depleted A PICO approach to inclusion criteria was adopted (population,
children and, in infants, the typical cohort undergoing S/A, the risk intervention, comparison, outcomes, study type – see Table 1).
of dehydration is a factor that requires close monitoring [7]. S/A Abstracts from retrieved papers were reviewed against four
administration to children with neurological impairments may be broad criteria:
difficult, and high doses of sedatives and multiple drug adminis-
tration increase the risk of medical complications [22]. S/A could 1 Sample included pediatric patients (<18 years of age)
also result in decreases in attention and cognitive function [24]. 2 Participants were receiving RT
Psychological stressors associated with S/A include nightmares 3 There was an intervention
and increased fear of medical procedures [25]. 4 The interventions/supports addressed the psychosocial distress
Alongside these concerns for the child there are numerous faced by these children/young people
systemic challenges including: increased time needed for the 5 There was an evaluation of supports/interventions
delivery of radiation therapy [20]; the necessity of having a
pediatric anesthesia and recovery team travelling to an adult If these criteria were met, or relevance was ambiguous, papers
radiation therapy facility [9,16,26–28]; the need for handover for were obtained and reviewed in full. Articles that used rates of S/A
the different members of these teams [29]; space for such teams to as an indirect assessment of distress were included. Exclusion
set up their equipment and meet; increased cost due to the criteria were: the sample was not pediatric patients or adolescents
delivery of S/A; and scheduling constraints on the department [20]. (patients older than 19 years of age); or if the article assessed
There is little formal guidance for the selection of patients for S/A, outcomes of other forms of radiation (for example, diagnostic
M. O’Connor, G.K.B. Halkett / Patient Education and Counseling 102 (2019) 275–283 277
Identification
Records identified through other
Records identified through sources additional journals,
database searching
reference list searches
(n= 1715)
(n= 114)
Records after 613 Records excluded (n=1171)

duplicates removed Not an article (review, etc.; n=73)
(n= 1216) Not in English (n=6)
Not pediatric (n=121)
Screening
About survivorship / post cancer impact (n=258)

About Nuclear and radiation events (n=43)
Not cancer (n=165)
Focus was not psychosocial (n=363)
Records screened Focus was not on RT (n=72)
(title screening) Focus was not on the child (n=67)
(n= 1216) Outside of date range (n=3)
Records excluded (n=36):

Records assessed Not an intervention study (n=2)
for eligibility Using same data set (n=2)
(abstract screening) Conference proceedings (n=2)
Eligibility
(n= 45) Review (n= 5)

Not empirical article (commentary, case report
n=11)
Not RT specific (n=12)
Not in English (n=2)
Included
Records included in review

(n=9)
Fig. 1. PRISMA diagram.
imaging) or other cancer treatments (for example, chemotherapy). 3.2. Search strategy
Grey literature, including conference proceedings; case studies;
reviews; and commentary papers were searched initially but A systematic search for articles reporting qualitative and
excluded as the quality was poor and the reports descriptive. quantitative studies from 1996 to December 2016 was conducted.
Table 1
PICO definitions of inclusion criteria.
PICO Inclusion criteria

Population Paediatric radiation therapy patients
Intervention Any
Comparison With or without control group
Outcomes Patient related: anxiety, distress, stress, coping, heart rate, S/A rates, salivary cortisol measures,
Parent related: parents’ perceptions of children’s distress
Radiation therapist (RT) related: RTs’ perceptions of children’s distress
Study type Any
The following electronic databases were searched: Medline, Ovid, 4. Findings

PubMed, ProQuest, PsychInfo, Scopus, Web of Science, Science
Direct, Embase, and Cochrane Library. The term cancer (cancer) Fig. 1 summarises the process of identifying and screening 1829
was combined with all related search terms associated with articles to obtain the final articles for review, which consisted of
pediatrics (pediatric*, pediatric*, child*, adolescent*), radiation nine studies involving 743 participants. Sample sizes of pediatric
therapy (radiation therapy, radiography, radiotherapy, radiation patients ranged from 11 to 244. All studies were single-site studies.
oncology, radiation), and psychosocial issues (psychological, The participants included patients 19 years of age or younger (a
psychosocial, supportive, psychological distress). The following participant in one study was aged 19 years), parents and RTs.
journals were also searched individually; Journal of Medical Reported diagnoses and gender breakdown of the patients are
Radiation Sciences, The Radiographer, Journal of Medical Imaging presented in Table 3. The interventions were diverse but can be
and Radiation Sciences, Journal of Radiotherapy in Practice, loosely organised into 3 key approaches: cognitive-behavioural
Radiography (2010–2015) and Radiation Therapist, as they were interventions; distraction activities; and preparation. Some of the
known to be relevant. The references in identified papers were also interventions used a combination of strategies.
reviewed for relevance. Only 3 studies used a theoretical framework [4,19,28]; the
following 2 adopted a cognitive behavioural approach [19,28].
3.3. Screening Klosky et al. [19] used a cognitive-behavioral intervention with an
interactive character. However, the approach was eclectic and
The initial search results were merged and any duplicates were they also included an educational video about RT, and distraction
removed. After 613 duplicates were removed 1216 titles were in the form of narrated stories. Methodologically, this was the
screened for eligibility. A team of three researchers independently strongest study with a methodological rating of IB. The control
assessed 45 resulting eligible abstracts. Studies were excluded on group received some elements of the intervention not usually
the basis of the predetermined inclusion criteria and PICO search included in usual care; as such, the authors refer to this group as a
strategy. Discrepancies were resolved by discussion. Through
this process nine articles were identified for inclusion in the final Table 3
review. Participant demographics.
Age range 0-19

3.4. Data extraction and analysis
Males 296–297*
Females 199–200*
Full text copies of the articles were obtained, and results and
reported outcomes were extracted. The following study details Diagnoses
were extracted and tabulated: the type of study; number and age CNS/brain 309
Haematological 127
of participants; number of sites; intervention type, outcome
Solid tumours 94
measures; and results (see Table 4). Each of the relevant articles Bone and soft tissue 40
was reviewed by the three researchers using the quality rating Germ cell tumours 14
adopted by Keim-Malpass, Letzkus and Kennedy [37]. This rating Retinoblastoma 5
system was used because it has limited penalty for studies that Kidney – renal tumours 4
Head and neck 1
are descriptive. See Table 2 for a summary of quality criteria. The
Others+ 17
studies were subjected to blinded examination of methodology
Note. Gender is presented as a range because the gender of one participant who
to assess eligibility, and this review was conducted without
dropped out in Barry et al. [39] was not specified.
knowledge of study results. Two reviewers independently rated *
Diagnoses and gender do not include Scott participants as these were not clearly
the articles and, if there was any disagreement, a third reviewer reported (N = 63) and gender was not specified in Grissom et al. [4](N = 116).
+
was asked to review. A consensus approach was then used to reported in Mizumoto et al. [41], unclear of further breakdown, may include
discuss and resolve any disagreements [38]. previously reported diagnoses.
Table 2
Summary of Quality Criteria.
Rating number (design) Details

LEVEL I Randomized Control Trial (RCT) or experimental study
LEVEL II Quasi-experimental (no manipulation of independent variable,
may have random assignment or control)
LEVEL III Non-experimental (no manipulation of independent variable,
includes descriptive, comparative, correlational studies or uses secondary
data)
LEVEL IV Qualitative (focus groups, starting point where no previous
data exist).
X Study did not meet final inclusion criteria
Rating rank Details

(quality)
A - HIGH Consistent, generalizable results, sufficient sample size, adequate control, definitive conclusions, consistent recommendations based on
comprehensive literature review that includes thorough reference to scientific evidence
B - GOOD Reasonably consistent results, sufficient sample size for the study design, some control, fairly definitive conclusions, reasonably consistent
recommendations based on fairly comprehensive literature review that includes some reference to scientific evidence
C - LOW Little evidence with inconsistent results, insufficient sample size for the study design, conclusions cannot be drawn
Criteria as cited in Keim-Malpass, Letzkus and Kennedy [37] who adapted the information, with permission, from the Association of Perioperative Registered Nurses (AORN).
Table 4
Study details.
Author, year, Type Number and age of patients Intervention Outcome Results Funding support and
place measures (conflict of interest)
(alphabetical
order)
Barry et al. [39] Mixed 11 participants: 5 intervention, 6 Music therapy CD. Kidcope No differences in time in the Redkite for
Australia methods. usual care questionnaire treatment room providing the
Small RCT & 6–13 years (10 children) No significant differences in dis- philanthropic
qualitative. [47] tress funds to enable the
Single site Parental Lack of congruence in ratings of paediatric Music
perceptions of children’s distress by children and Therapy program
the efficacy of RTs and children and parents to continue
children’s Differences approaching signifi- (None)
coping cance (p = 0.076) in the use of social
strategies withdrawal as a coping strategy
Patient, parent between the usual care group (67%)
and RT and the intervention group (0%)
perceptions of using Kidcope
distress No differences for other coping
Clinical strategies
reflective Distraction, cognitive restructuring
journal [48] and emotional regulation were
perceived as most helpful for chil-
dren
The music therapy was considered
fun, supportive and helpful for
children and families. It provided
distraction and meant children
were open to psychosocial support.
Grissom et al. Retrospective 116 participants: 5–12 years Play-based S/A rates The total number of sessions and Supported in part
[4] USA chart review procedural duration of the intervention was by the Child Life
preparation support significantly associated with re- Council’s
intervention duced the use of S/A, with or Advancing the
provided by child without adjustment for covariates Field of Play for
life specialists Hospitalized
Children Initiative
grant from
TheWalt Disney
Company, by the
Cancer Center Core
Grant
CA 21765 from the
National Institutes
of Health, and by
the American
Lebanese Syrian
Associated
Charities (ALSAC)
(None)
Haeberli et al. Retrospective 313 participants: 223 usual care, Psychoeducation S/A rates Proportion of children needing S/A None
[26] and 90 intervention. 0–19.1 years (To prepare was significantly lower for the in- (None)
Switzerland prospective patients) tervention group (8/90 = 8.9%;33/
audit. Single 154 = 21.4%) p = 0.015
site Reduction in median age of children
needing S/A from 3.2 to 2.7 years. p <
0.001
Klosky et al. RCT with 79 participants: 41intervention, Psychoeducation S/A rates Significant between group differ- Funded in part by a
[19] USA modified 38 modified control. 2–7 years Observation ences in mean heart rates for total grant from the
Additional control group. Scale of treatment p < 0.05 STARBRIGHT
reference to Single site Behavioural Male participants had significantly Foundation, the
this same Distress lower heart rates than females American
data set can Modified form p < 0.05 Lebanese Syrian
be found: [51] No differences in S/A rates or on theAssociated
[49,50]. Heart rate Observation Scale of Behavioural Charities, and a
State-Trait Distress scale National Cancer
Anxiety Results for State-Trait Anxiety scores
Institute,
(parents) [52] for parents not reported. Cancer Center
Support grant
(None)
Mizumoto Between 111 participants A, 40, could Preparation Treatment Treatment time significantly re- Supported in part
et al. [41] groups follow instructions, no time duced from days 2-6 and the last 5 by Grants-in-Aid
Japan comparison. intervention; B, 60, could S/A rates days for intervention group p < 0.03 for Scientific
Single site communicate but not stay on No significant differences in the Research;
bed; C, 11, needed S/A. 0.7–19.6 number of patients who needed S/A Challenging
years Exploratory
Research, Young
Table 4 (Continued)
Author, year, Type Number and age of patients Intervention Outcome Results Funding support and
place measures (conflict of interest)
(alphabetical
order)
Scientists; and
Scientific
Research from the
Ministry of
Education,
Science,
Sports and Culture
of Japan
(None)
Shrimpton Qualitative 20 participants, parents of RT. 3– Movie making Parental Themes were: attention distraction; Supported by the
et al. [3] evaluation. 15 years patients perceptions putting the child at ease; increasing Victoria
Australia Single site co-operation and motivation; easing Government
parental distress through a
Victoria Cancer
Agency cancer
research capacity
building grant
(None)
Slifer [40] USA Single arm. 11 children. 2.5–7 years Videotaped S/A rates 9/11 children (81.8%) children not Supported in part
Single site behavioural training sedated at all by the Kennedy
1 child not sedated for last 10 of 31 Krieger Institute
treatments and The Johns
= 90.9% success rate Hopkins School of
Medicine Mental
Retardation
Research grant
(None)
Scott et al. [21] Prospective 63 children. 2–5 years Educational S/A rates S/A given on 111/1030 treatment No funding
UK audit. Single preparation days (10.8%) support stated
site 6 patients (9.5%) sedated for whole (None)
of treatment course
52 patients no S/A at all (82.5%)
Tsai et al. [28] RCT. Single 19 children. 10 control, 9 Therapeutic play S/A rates No differences in S/A rates Financial support
Taiwan site intervention. 3–15 years using cognitive Faces anxiety Significant difference in mean Faces received for this
behavioural therapy scale (FAS) Anxiety Scale between the control study from the
[53] group and intervention group Department of
Beck Youth p < 0.05 Health, R.O.C. and
Anxiety Salivary cortisol concentrations the
Inventory were significant in the intervention Charity
Heart rate group pre and post-test p < 0.05 Foundation of JUT
(BAI-Y) [54] No significant differences on the Land Development
Salivary Beck Youth Anxiety Inventory or Group, Taiwan
cortisol levels heart rate variability (None)
modified control group. Outcome measures were ratings of room; no significant differences in children’s distress; a lack of
behavioural stress, heart rate and state-trait anxiety. Significant congruence in ratings of children’s distress by children and RTs,
differences in mean heart rate were found between the two and children and parents; differences approaching significance
groups. Tsai et al. [28] also used cognitive behavioural therapy (p = 0.076) in the use of social withdrawal as a coping strategy
alongside therapeutic play to reduce pediatric patient anxiety. between the usual care group (67%) and the intervention group
This study design was an RCT. Outcome measures were: S/A rates, (0%) using Kidcope, but no differences for other coping strategies.
the Faces Anxiety Scale (FAS), the Beck Youth Anxiety Inventory, Distraction, cognitive restructuring and emotional regulation were
heart rate, and salivary cortisol levels. There were no differences perceived as most helpful for children; and the music therapy was
in S/A rates; there were significant difference in mean FAS scores considered fun, supportive and helpful for children and families. It
between the control group and intervention group p < 0.05; provided distraction and meant children were more open to
salivary cortisol concentrations were significantly different in the psychosocial support. This study was rated IIC. It used random-
intervention group pre and post-test p < 0.05; and there were no isation; however, usual care also included the option to listen to
significant differences on the Beck Youth Anxiety Inventory or music (music was the basis of the intervention), which 4/6
heart rate variability. This study was rated IIC as it was unclear if participants did. Slifer [40] reported descriptive data from a
patients were randomised, and the control group included only multicomponent intervention including watching a video, also for
male patients. distraction, and desensitisation. This study was rated IIIC. There
Distraction was adopted by Barry et al. [39] and Grissom et al. were no controls, and reported information was limited. The
[4]. Barry et al. used music to distract patients. Outcome measures outcome measure was sedation rates. The findings were presented
included coping using the Kidcope questionnaire and parental as percentages with no comparison data; 9/11 children (81.8%)
perceptions of the efficacy of children’s coping strategies; patient, children not sedated at all; 1 child not sedated for last 10 of 31
parent and RT perceptions of distress; and time in treatment room. treatments. These findings were reported as demonstrating a 90.9%
There were no significant differences in time in the treatment success rate.
Distraction before RT, using movie making, was adopted by firm conclusions. However, interventions drawing on cognitive
Shrimpton et al. [3] who reported on a qualitative study with behavioural approaches appear to be worth exploring further, as
parents of pediatric patients interviewed about the movie making are approaches grounded in child development. Therapeutic play,
program. This paper was assessed as IVB as the analysis was particularly procedural preparation via play, also seems to be a
detailed and conclusions drawn appeared to be logical. However, useful starting point. Distraction and preparation may be useful
the authors only interviewed parents of patients with favourable but the studies were not sufficiently robust to warrant endorse-
RT outcomes, which may have influenced the parents’ perceptions. ment as a way forward. There was only one qualitative study,
Whilst it is advantageous to hear what was salient to children and which is a gap, as this could inform future interventions.
parents, these themes provide us with limited information on how Six studies reported significant effects. Only one study reported
to move forward in a systematic way. group differences in children’s reported anxiety [28]. This study
Preparation was the most commonly used approach with 4 also reported significant differences in cortisol levels. Two studies
studies following this method [4,21,26,41]. Each study adopted a reported significant differences in S/A rates; [4,26], one study
different type of preparation format. Grissom et al. [4] used a differences in treatment time [41], and one study reported
retrospective chart review of a supportive intervention led by child differences in mean heart rates [19]. The interventions associated
life specialists. This study was one of 3 that reported drawing on a with significant reductions in children’s distress (or proxies of
theoretical framework; child development. The outcome measure distress) compared to a control group were: therapeutic play using
was S/A rates. The total number of sessions and duration of the cognitive behavioural therapy [28]; play based procedural
intervention was significantly associated with reduced the use of S/ preparation [4], procedural preparation [41], and psychoeducation
A. There was no control arm. This study was rated IIIB. Treatment [19,26].
preparation was also the focus of Mizumoto et al.’s study [41]. This Previous research also using S/A rates in children as an outcome
study adopted a cross-sectional design with three groups based on measure in different medical procedures report similar conclu-
the child’s ability to follow instructions during treatment. Group A sions. Tornqvist et al. [42], demonstrated that a preparatory
could follow instructions; Group B could communicate, but had intervention consisting of a booklet and storybook, a doll-size
some difficulty complying with instructions; and Group C required model of the equipment, and a distraction video whilst undertak-
S/A. There was a clear difference in ages between the groups and ing an MRI procedure, where it is also common that children are
only Group B received the intervention. Outcome measures given S/A, reduced the need for S/A in children 4 and 9 years of age.
included treatment time and S/A rates. Treatment time signifi- Rothman et al. [43] found that pre-MRI instruction including a
cantly reduced from days 2–6 and the last 5 days for intervention booklet, movie and simulator practice reduced the need for S/A,
group p < 0.03 but there were no significant differences in the and lowered parental anxiety, compared to a control group who
number of patients who needed S/A. This study was assessed as received only the booklet. Participants in this study were aged 5–
IIIC. 16 years. Play based interventions were also found to reduce
Haeberli et al. [26] retrospectively analysed secondary data on anxiety and negative emotions in children aged 3–12 years who
pediatric patients’ rates of S/A pre and post the introduction of a were hospitalised in two Hong Kong settings [44].
psycho-education intervention to assist patient adjustment to RT. Krauss, Krauss and Green [45] advocate assessment of the
The outcome measure was S/A rates. The proportion of children child’s emotional state, the provision of developmentally appro-
needing S/A was significantly lower for the intervention group (8/ priate language and the provision of procedural and sensory
90 = 8.9%; 33/154 = 21.4%) p = 0.015 and there was a reduction in information for managing anxiety and promoting co-operation in
median age of children needing S/A from 3.2 to 2.7 years p < 0.001. children who need medical procedures. This is congruent with
The intervention was not clearly described and appears to have findings from research with adult cancer patients where it was
been implemented prior to the study as usual practice at the site. It found that providing procedural and sensory information,
was unclear if this intervention was standardised, and the number alongside radiation therapist communication skills training, can
of support sessions varied from patient to patient, with a mean of 5 reduce patient anxiety prior to radiotherapy treatment com-
sessions. It was rated III3. Scott et al.’s preparation study [21] was mencement [30–33]. Hence, these are avenues for further research.
also rated IIIC. This study described secondary data following the The findings from the studies reviewed must be treated with
introduction of an educational pre-procedural play program. caution due to the low quality ratings of these studies. All studies in
Participants who did not receive the intervention appeared to our review involved a single-site only, had inconsistent outcome
need more urgent treatment than those in the intervention group, measures, and it was often unclear if participants had been
or those who did not receive the play preparation due to time randomly assigned to the control or intervention arm of the
constraints; and conclusions were drawn on little supporting studies. If randomisation had occurred, procedures were unclear.
evidence. S/A rates was the main outcome measure. Results were Only three studies articulated a theoretical framework. Klosky
reported as percentages: S/A given on 111/1030 treatment days et al. [19] adopted a cognitive behavioural approach, Tsai et al. [28]
(10.8%); 6 patients (9.5%) sedated for whole of treatment course; used cognitive behavioursal therapy alongside therapeutic play,
52 patients no S/A at all (82.5%). There were no comparison data. and Grissom et al. [4] drew upon child development, therapeutic
play, coping, and procedural preparation via play. However, it
5. Discussion remains unclear what the mechanisms for change in distress were
for these studies; cognitive behavioural therapeutic approaches,
There is a lack of robust research in this area and the overall play, preparation, communication or even personal attention.
quality is not high. All the studies were single-site studies and In order to develop rigorous research prior to implementation
there was little consistency across studies. Most interventions of interventions in clinical settings we need to be aware of existing
were not theoretically driven, and tended to be generic and wide- research [46]. As such, this systematic review is essential for
ranging. The three studies with a theoretical underpinning guiding much needed research in the area of pediatric radiation
[4,19,28] did not explain in detail about the frameworks used or therapy. There was only one qualitative study, which suggests an
how they guided the research. These studies also included a range urgent need for more preliminary research as a first step in
of approaches, which makes it difficult to know what the improving support for pediatric cancer patients prior to and during
mechanisms for change were. Each study adopted a different radiation therapy. Despite radiation therapy centres being busy
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Tech Savvy Susan Doyle-Lindrud, DNP, AOCNP®, DCC—Associate Editor
Proton Beam Therapy for Pediatric Malignancies

Downloaded on 10 01 2017. Single-user license only. Copyright 2017 by the Oncology Nursing Society. For permission to post online, reprint, adapt, or reuse, please email pubpermissions@ons.org
Susan Doyle-Lindrud, DNP, AOCNP®, DCC
Gray (Gy). Photons travel through tissue

Although major advances have been made in radiation techniques, concerns still
without stopping, resulting in continuous
exist about the treatment-related acute and long-term side effects. This issue is dosing of radiation beyond the tumor
most notable in the pediatric population because of developing organs and tissues (Merchant & Farr, 2014).
combined with longer life expectancies. Proton beam therapy has the advantage of a Proton therapy is an external radio-
reduced dose of radiation with less scatter to normal tissue, which may lead to fewer therapy modality that uses protons in-
adverse side effects. stead of photons. Protons are positively
charged particles that are accelerated by
At a Glance a large, expensive particle accelerator
• Many pediatric patients with cancer receive radiation therapy. called a cyclotron or synchrotron, avail-
• Radiation treatments can cause significant acute and long-term side effects. able at a limited number of specialized
• Proton beam therapy reduces radiation scatter to normal tissues and may decrease centers (Decker & Wilson, 2012). When
acute and late toxicities. a proton beam enters the body, it delivers
a constant dose within a few millimeters
Susan Doyle-Lindrud, DNP, AOCNP®, DCC, is an assistant dean of Academic Affairs and a director of the of the end of the particle range, the so-
Doctor of Nursing Practice Program and Oncology Program in the School of Nursing at Columbia Univer- called Bragg peak (see Figure 1). Beyond
sity in New York, NY. The author takes full responsibility for the content of the article. The author did not
the Bragg peak, protons deliver almost
receive honoraria for this work. No financial relationships relevant to the content of this article have been
disclosed by the author or editorial staff. Doyle-Lindrud can be reached at smd9@columbia.edu, with copy no additional exit dose beyond the tar-
to editor at CJONEditor@ons.org. get. The benefit of this is that the proton
Key words: radiation; survivorship; technology beam stops within the patient’s tumor
Digital Object Identifier: 10.1188/15.CJON.521-523 region, and the radiation does not extend
to normal tissue beyond the tumor. This
allows for radiation absorption to deep
tumor targets with less scatter of radia-
P
tion to normal surrounding tissues and
roton beam therapy is one of the ation is an important component of many
the possible safe escalation of radiation
latest advancements in radiation treatment regimens for pediatric cancers,
doses to enhance tumor control (Daw &
therapy used to treat cancer. Al- it is associated with early and late side
Mahajan, 2013; Swisher-McClure, Hahn,
though initially proposed in 1946, the effects that can be more problematic
& Bekelman, 2015).
first patients were treated in 1958 at the in children because of their developing
Lawrence Berkeley National Laboratory organs and tissues (Armstrong, Stovall,
in California (Merchant & Farr, 2014; Mi- & Robison, 2010). The possible benefits Childhood Cancer
tin & Zietman, 2014). The use of proton of proton beam therapy are the reduction With multimodality therapies for pedi-
beam therapy in clinical practice has in dose to normal tissues and a reduction atric malignancies, the five-year survival
been slowly introduced but has gained in adverse effects of radiation treatment rate exceeds 80%. As many as 60%–90%
significant ground with increasing public (Merchant, 2013). of survivors of pediatric cancer expe-
awareness since 2010 (Mitin & Zietman, rience adverse side effects related to
2014). One of the reasons this form of
radiation has garnered interest is because
Background the cancer or the treatment received
(Geenen et al., 2007). The challenge for
of theoretical advantages as compared to Radiation therapy for patients with the pediatric cancer population with
photon therapy, with specific potential cancer commonly uses external beam solid tumors undergoing radiation is the
advantages in the pediatric population. delivery techniques that include photons. large, irregular volume of tumors close
About 12,000 new cases of pediatric This form of ionizing radiation releases to critical structures in the body. In addi-
cancer occur each year in the United energy and delivers radiation doses to tion, children, when compared to adults,
States, and about 3,000 require radiation the specific areas of a patient’s body. have longer anticipated life spans and an
therapy (Merchant, 2013). Although radi- The standard dose of radiation is the increased sensitivity to the radiation from
Clinical Journal of Oncology Nursing • Volume 19, Number 5 • Tech Savvy 521
100
investigators that proton References
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and may hold therapeutic Armstrong, G.T., Stovall, M., & Robison,
80 benefit with certain types L.L. (2010). Long-term effects of radia-
of tumors, such as central tion exposure among adult survivors of
6 MV
Dose (%)
nervous system tumors, childhood cancer: Results from the child-

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over other forms of radia- hood cancer survivor study. Radiation
250 MeV tion therapy (Merchant & Research, 174, 840–850. doi:10.1667/
40 RR1903.1
Farr, 2014; Merchant et al.,
2008). Daw, N.C., & Mahajan, A. (2013). Photons or
20 250 MeV protons for non-central nervous system
solid malignancies in children: A histori-
Challenges cal perspective and important highlights.
0 American Society of Clinical Oncology
0 10 20 30 As the cost of health care
Educational Book. Retrieved from http://
Depth in Tissue (cm) has increased, the cost
meetinglibrary.asco.org/content/126-132
and benefits of this new
Photon Modified proton Native proton Decker, R.H., & Wilson, L.D. (2012). Chapter
technology continue to be
40: Radiotherapy. In L.A. Goldsmith, S.I.
debated. The evidence to
Katz, B.A. Gilchrest, A.S. Paller, D.J. Lef-
FIGURE 1. Proton and Photon Beams With Bragg support proton beam ther- fell, & K. Wolff (Eds.), Fitzpatrick’s der-
Peak apy in terms of outcomes matology in general medicine (8th ed.).
Note. From “Bragg Peak,” by A.A. Miller, 2005, licensed under and cost is limited (Mori- Retrieved from http://accessmedicine
CC BY-SA 3.0. Retrieved from https://commons.wikimedia.org/ arty, Borah, Foote, Pulido, .mhmedical.com/content.aspx?bookid=3
wiki/File:BraggPeak.png & Shah, 2015). Construc- 92&Sectionid=41138978
tion of a proton therapy Geenen, M.M., Cardous-Ubbink, M.C., Kre-
center is costly, ranging mer, L.C., van den Bos, C., van der Pal,
developing organs and tissues, which from $25 million to more than $200 mil- H.J., Heinen, R.C., . . . van Leeuwen, F.E.
puts them at greater risk of secondary lion, depending on the size of the facility (2007). Medical assessment of adverse
cancers and late effects of treatment (Swisher-McClure et al., 2015). The costs health outcomes in long-term survivors of
(Daw & Mahajan, 2013). Depending on of treatment are about two to three times childhood cancer. JAMA, 297, 2705–2715.
the location of the tumor in the body and greater than photon-based radiation treat- doi:10.1001/jama.297.24.2705
the associated field of radiation, the late ments. In addition, because of the cost of Greenberger, B.A., Pulsifer, M.B., Ebb, D.H.,
effects include deficits in cognition, en- constructing a facility, these centers are MacDonald, S.M., Jones, R.M., Butler, W.E.,
docrine function, vascular abnormality, only available in select locations, adding to . . . Yock, T.I. (2014). Clinical outcomes
dental anomalies, hypothyroidism, car- the financial burden for patients and their and late endocrine, neurocognitive, and
diovascular and gastrointestinal toxicity, families because receiving proton beam visual profiles of proton radiation for pe-
and secondary malignancies (Armstrong therapy may involve travel, housing, and diatric low-grade gliomas. International
et al., 2010; Geenen et al., 2007; Green- potential lost wages (Swisher-McClure et Journal of Radiation Oncology, Biology,
berger et al., 2014; Zhang et al., 2013). al., 2015). Physics, 89, 1060–1068. doi:10.1016/j
Proton beam therapy has been in- .ijrobp.2014.04.053
Merchant, T.E. (2013). Clinical controversies:
cluded as a radiation option in pediatric
clinical trials for more than a decade,
Conclusion Proton therapy for pediatric tumors. Semi-
nars in Radiation Oncology, 23, 97–108.
and the number of patients treated has The use of proton beam therapy to treat
doi:10.1016/j.semradonc.2012.11.008
increased (Merchant, 2013). Guidelines pediatric malignancies is increasing, with
Merchant, T.E., & Farr, J.B. (2014). Proton
that include proton therapy for pediatric the possible benefit that this modality
beam therapy: A fad or a new standard
central nervous system, musculoskeletal, may improve quality of life for long-term
of care. Current Opinion in Pediatrics,
and solid tumors have been developed by cancer survivors (Palm & Johansson,
26, 3–8. doi:10.1097/MOP.0000000000
the Children’s Oncology Group and ap- 2007; Rombi et al., 2014). Longitudinal,
000048
proved by the National Cancer Institute’s comparative clinical trials with long-term
Merchant, T.E., Hua, C.H., Shukla, H., Ying,
Cancer Therapy Evaluation Program follow-up are needed to assess survival X., Nill, S., & Oelfke, U. (2008). Proton
(Merchant, 2013). Biologically, protons outcomes and evaluate for late effects and versus photon radiotherapy for common
have not demonstrated a significant ad- secondary malignancies of proton beam pediatric brain tumors: Comparison of
vantage when compared to photons, therapy, as compared to photon therapy. models of dose characteristics and their
which leads to similar rates of predicted With continued advancement in radiation relationship to cognitive function. Pe-
tumor control, but the physical prop- delivery techniques, the development of diatric Blood and Cancer, 51, 110–117.
erties of protons lead to less radiation smaller and less costly proton beam units doi:10.1002/pbc.21530
scatter to normal tissues and a decrease could lead to an increase in the develop- Mitin, T., & Zietman, A.L. (2014). Promise
in acute and late toxicities (Rombi, Ven- ment of proton beam treatment centers and pitfalls of heavy-particle therapy.
narini, Vinante, Ravanelli, & Amichetti, and a decrease in cost to patients (Mitin Journal of Clinical Oncology, 32, 2855–
2014). However, consensus exists among & Zietman, 2014). 2863. doi:10.1200/JCO.2014.55.1945
522 October 2015 • Volume 19, Number 5 • Clinical Journal of Oncology Nursing
Moriarty, J.P., Borah, B.J., Foote, R.L., Pulido, of Pediatrics, 40, 74. doi:10.1186/s13052 Zhang, R., Howell, R.M., Homann, K., Gie-
J.S., & Shah, N.D. (2015). Cost-effectiveness -014-0074-6 beler, A., Taddei, P.J., Mahajan, A., &
of proton beam therapy for intraocular Swisher-McClure, S., Hahn, S.M., & Bekel- Newhauser, W.D. (2013). Predicted risks
melanoma. PLoS One, 10, e0127814. man, J. (2015). Proton beam therapy: of radiogenic cardiac toxicity in two
doi:10.1371/journal.pone.0127814 The next disruptive innovation in health- pediatric patients undergoing photon or
Palm, A., & Johansson, K.A. (2007). A re- care? Postgraduate Medical Journal, 91, proton radiotherapy. Radiation Oncol-
view of the impact of photon and proton 241–243. ogy, 8, 184. doi:10.1186/1748-717X-8-184
external beam radiotherapy treatment
modalities on the dose distribution in
field and out-of-field; implications for
the long-term morbidity of cancer sur-
Do You Have an Interesting Topic to Share?
vivors. Acta Oncologica, 46, 462–473.
doi:10.1080/02841860701218626 Tech Savvy discusses the ways in which technology affects nurses, patients, the
Rombi, B., Vennarini, S., Vinante, L., Rav- healthcare team, and the oncology setting. Length should be no more than 1,000–1,500
anelli, D., & Amichetti, M. (2014). Proton words, exclusive of tables, figures, insets, and references. If interested, contact Associate
radiotherapy for pediatric tumors: Review Editor Susan Doyle-Lindrud, DNP, AOCNP®, DCC, at smd9@columbia.edu.
of first clinical results. Italian Journal
Clinical Journal of Oncology Nursing • Volume 19, Number 5 • Tech Savvy 523
Australasian Physical & Engineering Sciences in Medicine
https://doi.org/10.1007/s13246-018-0658-3
TECHNICAL PAPER
Radioiodine (131I) therapies performed in a paediatric hospital:

facilities and procedures
Giovanni Bibbo1 · Tracy Benger1 · Victoria Sigalas1 · Ian Kirkwood1
Received: 22 October 2017 / Accepted: 17 June 2018

© Australasian College of Physical Scientists and Engineers in Medicine 2018
Abstract
Radioiodine (131I) therapies on younger children with thyroid cancer and neuroblastoma can be challenging as they are
required to be isolated for a period of time due to radiation safety concerns. At our hospital these therapies are performed in
a purpose-built child-friendly therapy room. Nursing staff are able to provide personal care during the isolation period with
minimum radiation exposure. Patients are provided with various age-appropriate entertainment items such as iPad, X-Box,
DVD, craft and books to keep them entertained while in isolation. Parents can communicate freely with their child via the
audio-visual system located in the Ward Parent Lounge and can also stay in the shielded part of the ante room of the therapy
room. Nursing staff can communicate with the patient via a similar audio-visual system located in the nurses station so that
they only need to enter the therapy room when they are required to provide personal patient care. All persons entering the
therapy room are monitored with personal digital dosimeters. Patients accept the isolation period with minimal aggravation
and the personal radiation exposures to staff, parents and visitors are well below the general public annual limit of 1000 µSv.
The design and facilities of the therapy room with its child-friendly surroundings and support network makes the experience
of the isolation period easier and positive for both patients and parents. For Graves’ disease, the patients are treated as out-
patients in the Department of Nuclear Medicine and are discharged within a short time after the radioiodine administration.
Keywords Radioiodine therapy · Neuroblastoma · Thyroid cancer treatment · Thyrotoxicosis · Paediatric cancer treatment ·
Paediatric isolation
Introduction is less than the recommended discharge limits [1] with the
requirement that they follow a set of written radiation pre-
Special radiation safety consideration is required for these cautions while in their home environment. For activities
therapies due to the high radioactivities used. The high greater than 600 MBq, such as those required to treat thy-
level of radiation and the potential of contamination from roid cancers and neuroblastoma, the radionuclide therapy
patients’ body fluids constitute a hazard to the patients’ car- activities must be administered in designated treatment areas
ers, staff and the general public. However, the basic princi- of the hospital registered for that purpose and the patients
ples of radiation safety and control (distance, time, shielding kept in isolation in those areas for a period of time until the
and monitoring) are similar for both diagnostic and thera- activities in their bodies have reduced sufficiently to meet
peutic procedures. the discharge criteria.
At our hospital, thyrotoxicosis patients are administered At our hospital, a purpose-built therapy room with shield-
600 MBq or less of sodium iodide (131I) and treated as out- ing properties suitable for 131I therapy procedures with activ-
patients. They are discharged soon after the administration ities up to 8 GBq was built in 2011. The high activity limit of
of the radioiodine as the external ambient dose equivalent the room is sufficient for activities such as those used to treat
patients suffering from advanced malignant phaeochromo-
cytomas/paragangliomas, neuroblastoma and thyroid cancer.
* Giovanni Bibbo
giovanni.bibbo@sa.gov.au
1
Nuclear Medicine, SA Medical Imaging, Women’s
and Children’s Hospital, 72 King William Road,
North Adelaide, SA 5006, Australia
13
Vol.:(0123456789)
Methods radioiodine (131I) that could be used for the treatment of

thyroid malignancy, advanced malignant phaeochromo-
At our hospital, radioiodine ( 131I) procedures are per- cytoma, neuroblastoma or other endocrine tumours with
formed on paediatric patients of age up to 18 years. For active uptake to 7.4 GBq. The 7.4 GBq was based on the
Graves’ disease, the patients are treated as outpatients in limitation imposed in 1956 by the Unites States Atomic
the Department of Nuclear Medicine. They are kept in the Energy Commission on single doses for thyroid cancer [3]
department for at least half an hour before their external as its Advisory Committee “found no evidence that a sin-
exposure rates are measured at a distance of 3 m to ensure gle dose larger than 200 mCi was more effective in treating
that the discharge criteria [1] are met and also to ensure thyroid cancer than a dose of 200 mCi or slightly less” [4].
that they are well enough to leave the hospital. It is also Since then, the single activity limit of 7.4 GBq for thyroid
important to keep the patient in the department for this cancer treatment has been considered as a “safe” activity
time as it takes up to 15 min for the shells and the contents [3] and, as a result, the Therapy Room was designed and
of the radioiodine capsules to dissolve in-vivo [2]. built for the use of radioiodine (131I) activity up to 8 GBq.
For advanced malignant phaeochromocytomas/paragan- The walls of the Room are of prefabricated concrete slabs
gliomas, neuroblastoma and thyroid cancer, the patients from floor to the ceiling of thickness 300 mm (at the head of
are required to be treated with radioiodine activities the bed) and 150 mm for other walls of the room. The ceiling
greater than 600 MBq and, thus, they are required to stay and floor are of 150 mm thick concrete. All gaps and joints
at the hospital in isolation for a period of time until the in the prefabricated concrete slabs, floor and ceiling were
external dose rates meet the required discharge criteria covered with lead of the appropriate thickness to provide
[1]. Younger patients, less than about 13 years, depend- continuous shielding properties across the walls. Distance
ing on their emotional maturity, require special care and from the patient bed was a critical parameter in determining
means to keep them in isolation. For this age group it is the required concrete thicknesses. The layout of the room is
unnatural to be separated from their parents. Even at a tra- such that a person standing in the ante room is protected by
ditional “sleep over” children will still be in contact with the concrete wall between the ante room and the ensuite as
other children and familiar adults in the absence of their long as the patient is not in direct sight from that position.
parents. Being placed in isolation for therapy may be the The entrance to the Therapy Room is via a maze and the
first time in their lives that they have been by themselves large entrance and the door separating the ante room and the
for an extended period and it happens at a point when they therapy room are not shielded. The maze mitigates the need
are most vulnerable—when they are sick. In addition to to shield the doors which are traditionally difficult to shield
their clinical condition the children would need to cope due to the weight of shielding required. Gamma rays from
with an unfamiliar hospital environment and unfamiliar the patient anywhere in the therapy room will not escape
staff. This is a very stressful time to be away from their the room without passing though concrete walls. Behind the
parents and a time when the children’s natural instincts window is open space.
are to stay close to their families. The isolation period The shielded Alcove can be used, when necessary, for
can be for 48 h or more for thyroid cancer patients and up overnight stay by a parent so that he/she can be close and
to 5 days or more for neuroblastoma patients. Thus, for able to communicate overnight verbally with the isolated
this age group, a paediatric-friendly environment is neces- child. The child is then aware that the parent is close by for
sary where parents can be close to their children, able to emotional support or for other needs. A small bed can fit in
interact regularly with them and, if necessary, even sleep this area. The Parent Lounge located close to the therapy
within hearing distance to ensure the children do not feel suite has all modern amenities. It is fitted with a closed cir-
abandoned. For this purpose, a paediatric-dedicated treat- cuit tv and an audio system enabling the patient and parents
ment facility room was built at our hospital. to communicate freely. A similar system is located at the
nurse station. This ensures that time required to be spent
by nursing staff and parents in the therapy room is kept to
Therapy room a minimum and only when they need to provide personal
patient care.
The paediatric-dedicated treatment facility room is shown At our hospital, a child is defined as a person of age up to
in Fig. 1. It is located in the Oncology Ward of the hospital 18 years. All amenities in the Ensuite are built to be suitable
and when not used for radioiodine treatment is used as a for children of all ages up to 18 years. The sewerage system
normal Ward room. At the time the Therapy Suite was for the disposal of patients’ radioactive excretions was built
built in 2011, the South Australian Radiation Protection to comply with the local legal requirements. Currently in
and Control legislation limited the maximum activity of South Australia, there are no requirements for holding tanks
for radioactive liquid waste.
13
Fig. 1 Layout of therapy room and adjacent areas
Since the end of 2012, the 7.4 GBq limit for radioiodine During the isolation period, equipment in the therapy room
therapy in South Australia no longer applies. If activities may only be repaired with the permission of the radiation
greater than 8 GBq are required to be used, the occupancy of safety officer. Cleaning of the room is suspended until the
adjacent patient room, other adjacent areas and areas above patient has been discharged and the room monitored and
and below the Therapy Room are assessed on a case-by-case decontaminated.
base depending on the prescribed therapy activity. To minimise the possibility of contamination of the
floor, absorbent sheets are secured to the floor around the
Nurse education toilet and bed. The patients’ sweat, saliva and (possibly)
urine will contaminate bedding as iodine pharmaceuticals
Prior to radioiodine therapy, nursing staff involved with are readily absorbed by bed linen and mattress material
patient care receive education on radiation safety as detailed (such as polyacetylene/polyurethane). Experience has
in Table 1. demonstrated that once the radioiodine is imbedded in
these materials any attempt at removing the contamina-
Room preparation tion is ineffective. It was found that the best option to
protect both the mattress and pillow from contamina-
Prior to therapy, it is necessary to ensure that all equipment tion was to use protective covers. Two mattress covers
in the room (television, audiovisual system, plumbing, etc.) are used for the mattress and, for extra protection, absor-
is fully functional with no faults that may affect the comfort bent sheets are placed between the mattress and the two
or safety of the patients during the period of confinement. protective covers. Similarly, the pillow is protected by
13
Table 1 Nurse radiation safety education
Prior to therapy, nursing staff involved with patient care receive education on radiation safety including:
Medical emergency: in a life-threatening situation, the patient’s medical management must always take precedence over radiation safety pre-
cautions
Isolation: the patient must stay in this room for the duration of his/her treatment
Radiation protection techniques: time, distance and shielding. During the isolation period only staff necessary for the caring of the patient
should enter the room and while in the room should spend as short a time as possible and at the maximum practical distance from the patient
consistent with adequate patient care. The audio-visual communication system should be used as much as possible to observe and communi-
cate with the patient
Awareness of radiation risks: pregnant female staff are advised not to enter the patient’s room during the treatment period and therefore should
not be allocated to care for the patients undergoing radionuclide therapy. The patient can receive visitors but not children or pregnant women
Awareness of possible body fluid contamination: patient’s body fluid (urine, faeces, saliva, vomitus, and sweat) is radioactive and thus to avoid
possible body fluid contamination staff must always use the Universal Precautions: to wear gloves when in the proximity of the patient
“Clean-up procedures”: any contaminations on the patient, staff, parent or visitors must be cleaned as soon as possible. Nuclear medicine
personnel should be notified as soon as possible of any contamination incident. Any skin contamination should be removed as soon as practi-
cable as skin absorption can be initially fast (5–10 min) [5]. The use of a shower is generally not appropriate as the local contamination may
spread to other part of the body. Local irrigation and cleansing are the most suitable procedures
Items in the room: no items must be removed from the room including patient’s personal items unless the items have been monitored for radia-
tion contamination by the Radiation Safety Officer or Nuclear Medicine personnel. Visitors must not take any items home unless they have
been checked for contamination
Patient care. The patient is to be encouraged to increase fluid intake and to empty his/her bladder frequently at least for the first 24 h to mini-
mise the radiation dose to the patient’s bladder. Males should pass urine while seated to avoid spilling urine. The toilet should be flushed at
least twice and the patient should wash hands thoroughly with soap. Any soiled clothing should be changed and placed in the provided linen
basket. Disposable cups, plates and cutlery should be available for patient use
Personal monitoring: all persons entering the Therapy Room must be monitored for personal radiation exposure with personal digital dosim-
eters while in the Room and the resulting personal doses recorded on the monitoring sheet located at the entrance of the Room
Discharge of patient: this will depend on the activity administered and the type of therapy. The patient will be discharged only when the activ-
ity of the radioactive iodine retained in the body and hence external radiation dose rate is measured and found to be less than the recom-
mended discharge limit. This measurement will be carried out by the Radiation Safety Officer. Most patients remain in isolation for more than
5 days for neuroblastoma and up to 3 or more for thyroid cancer
two pillow protective covers interleaved with absorbent Patient preparation

sheets. Standard linen is used over the top of the pro-
tective layers so the comfort of the bedding is not com- The process of radioiodine administration and the radiation
promised. Also, absorbent sheets are placed on the floor safety precautions that are required to be followed during
around the toilet, alongside the beds and the path from the the hospital isolation period and post treatment at home
toilet to the bed. The absorbent sheets are fixed in place are explained and provided in writing as an “Information
with masking tape. for Patient” leaflet to the patients and their families by the
Appropriate age-specific entertainment items such as nuclear medicine physician during the consultation sessions.
iPad, X-Box, DVD, craft and books are provided to enter- However, this information is re-iterated to them prior to the
tain the patient while in isolation. Prior to admission, administration of the radioiodine and on discharge from
a hospital play therapist meets with the family to help the hospital. During the consultation sessions, patients and
determine the most appropriate toys and entertainment their families are also advised not to take personal electronic
items to provide to the patient. These and other devices devices into the Therapy Room for use during the isolation
used by the patient during the isolation period are covered period because, should the devices become contaminated,
by thin transparent plastic bags. It was found that even they may not be able to take them home upon discharge. In
though the iodine pharmaceutical is readily absorbed by addition, patients are advised to wear clothing during the
rubber and plastic materials, the plastic covers minimise isolation period that can be disposed of by the hospital after
the amount of contamination on these devices. Other the appropriate decay interval.
room preparations include linen trolleys and waste bins For both thyroid cancer and thyrotoxicosis patients, thy-
(lined with radiation waste bags), and radiation warning roxine medication is stopped 2–3 weeks before the proce-
signage displayed on the entrance area with emergency dure and for the duration of the therapy procedure. Also,
contact details. Monitoring equipment, record sheets and the patients are required to follow a low iodine diet for
radioactive spills kit are placed at the entrance of the 2 weeks. For neuroblastoma patients, to prevent uptake of
Therapy Suite. radioiodine by the thyroid, the thyroid is blocked by taking
13
non-radioactive iodine capsules 24–48 h before the treatment 3 m is less than 5 µSv/h [1]. The dose rate data are also used
and continued for 15 days after the therapy. for dosimetry purpose to: (a) calculate the absorbed blood
dose of the patient that may need a repeated radioiodine pro-
Administration of radioiodine cedure with prescribed activity more than 7.4 GBq; and (b)
to ensure that the safe blood dose limit of 2 Gy and whole-
The process of administration of the radioiodine is by the body retention of 4400 MBq in the absence of diffuse lung
patient swallowing a capsule containing N a131I. The admin- metastases or 3000 MBq with the presence of metastases
istration takes place in the nuclear medicine suite for thy- at 48 h [3] are not exceeded. For this purpose, the formula
rotoxicosis patients and in the therapy room for cancer stated in Hänscheid et al. [6] is used.
patients. The capsule is placed in a paper cup and given to On discharge, the radiation safety precautions and dura-
the patient to swallow with water contained in a separate tion of the precautions that the patient must follow in the
cup. Patients are advised not to bite the capsule. Patient who home environment are stressed.
may have a problem with swallowing the capsule are identi-
fied earlier during the consultation session. Such patients are Post discharge decontamination of the therapy
encouraged to learn the technique of swallowing a capsule room
by practising at home with “sweets” of similar size to the
radioiodine capsule prior to treatment. It is not uncommon Following the discharge of the patients, the Therapy Room
for children to be unfamiliar with swallowing capsules as is monitored and decontaminated before further use. Room
most medications for children are available in liquid form. waste is separated into radioactive and non-radioactive
Neuroblastoma patients are administered with 131I MIBG waste. Non-radioactive waste is disposed of as general
(meta-iodobenzylguanidine) by intravenous infusion over a waste. Contaminated objects are transported to the Radio-
period of 1–2 h depending on the prescribed activity. An active Waste Store for decay and eventually disposed of or
infusion pump shielded with lead bricks is used to minimise returned for re-use. Non-removable objects and room ameni-
radiation dose to the administering nuclear medicine physi- ties are cleaned of any removable contamination such that
cian. During this time the patients’ blood pressure and pulse any remaining fixed contamination [7] is less than 5 Bq/
rates are also monitored. cm2 determined with a survey meter fitted with a halogen-
quenched Geiger-Muller alpha, beta and gamma radiation
Isolation period pancake-type detector.
Patient care is provided by the nursing staff and parents. Radiation safety precautions to be followed
Thyroid cancer patients are still maintained on a low iodine in the home environment
diet during the isolation period. Only disposable cups, plates
and cutlery are provided for patient use. Regular oral hydra- Once discharged from the hospital, patients will be in con-
tion and voiding is encouraged to minimise bladder radiation tact with a number of persons of different age including
dose. For entertainment, patients have access to TV, videos, friends, family members and the general public. In deriv-
computer games, iPad, books, etc. All waste produced in ing the radiation precautions that the therapy patients must
the room including any soiled clothing is checked regularly follow in the home environment, different periods of con-
and if contaminated transported to the Radioactive Waste tact with other persons and scenarios are assumed. A safety
Store for decay. factor of two has been incorporated in the calculations of
doses from the patients by using a dose constraint of 500 µSv
Discharge of inpatients rather than the annual general public limit of 1000 µSv as
there is a wide variability in the exposure rate and effective
During the isolation period, the external ambient dose rate half-times of radioactivity retention in patients for all radi-
equivalent is measured at 3 m from the patient in standing oiodine therapy procedures including hyperthyroid, thyroid
position and always after the patient has been asked to void. cancer [8] and neuroblastoma. The use of the safety factor
The first measurement (baseline) is made half an hour post of two in the calculations of doses has demonstrated that the
administration of the radioiodine and then measurements resulting radiation precautions are reasonable and not too
are repeated regularly every 3 h during working hours to: (a) restrictive. In addition, distance is critical in radiation pro-
predict when the patient could be discharged; (b) to interact tection as the radiation intensity decreases from the source
and support the patient, parents and ward nursing staff car- with a power law function.
ing for the patient ensuring any radiation issues are quickly Since the radioactivity is spread within the patient body,
resolved; and (c) to remove radioactive waste. The patient is even in thyrotoxicosis and thyroid cancer patients, a line
discharged when the external ambient dose rate equivalent at source model with an inverse power law index of 1.85
13
corresponding to a line source length of 20 cm is used to cal- neuroblastoma patients need to follow post discharge are
culate doses at various distances from the patients. With this reported in Tables 5 and 6 respectively.
index, the line source model is more accurate [9–12] than the
inverse square law, particularly at small distances from the
patients. Since the neuroblastoma patients in this study are Results
of ages between 4 and 10 years (see Table 2) and cancer is
distributed in the patients’ trunks, a power law index of 1.61 Since 2011, 14 radioiodine procedures have been performed
corresponding to a source length of 50 cm (trunk length of in the new Therapy Suite, averaging two per year. The ther-
a 7-year-old child [12]) is used. The ARPANSA [1] inverse apy data (administered activities, ages of the patients, the
power law index of 1.5 corresponds to a line source length first and second half-times of retained activities and coef-
of 70 cm, the trunk length of an adult [13]. Approval was ficients for the bi-exponential fits to the external measured
gained from the hospital Human Research Ethics Commit- dose rates) for eight thyroid cancer and six neuroblastoma
tee to access, analysis and publish the current data shown patients are reported in Table 2 for neuroblastoma patients
in Tables 2 and 3. and Table 3 for thyroid cancer patients. For neuroblastoma,
For thyrotoxicosis patients, the radiation safety precau- patient 4 had two repeated procedures as shown in Table 2.
tions recommended upon discharge from the hospital are Thus, only four patients are reported for neuroblastoma as
shown in Table 4. They are based on a bi-exponential decay radioiodine treatment on these patients is palliative for pain
equation [14], with the times and distances around other relief only, and, hence, radioiodine treatments are less fre-
persons indicated in italic font within parenthesis. For thy- quently performed than for thyroid cancer patients. How-
roid cancer and neuroblastoma patients, the precautions ever, more neuroblastoma than thyroid cancers are diag-
are derived using the average slow component curves of nosed and at younger age. The external dose rate (nGy/h
patients from this study normalised to 25 µGy/h at a dis- per MBq) at 3 m from a 8.9-year-old patient administered
tance of 1 m from the patient at discharge. The dose rate with 4065 MBq of 131I labelled MIBG for neuroblastoma
curves are: 25 × e−0.0425*t(h) and 25 × e−0.3438*t(d) for thyroid and from a 13-year-old patient administered with 2759 MBq
cancer and neuroblastoma patients, respectively, with the of sodium iodide (131I) for thyroid cancer are shown in Fig. 2
exponents being in hours (h) and days (d) as indicated. The and the corresponding retention of radioiodine in their bod-
resulting radiation safety precautions that thyroid cancer and ies are shown in Fig. 3.
Table 2 Neuroblastoma Patient 1 2 3 4 4 repeated#1 4 repeated#2

therapies data for patients
treated since 2011 Age (years) 4.28 7.38 7.24 8.91 9.34 9.45
Activity (MBq) 5100 1570 7324 4065 985 4093
1st T½ (h) 5.3 9.9 28.9 12.7 18.6 13.1
2nd T½ (h) 30.4 48.8 28.9 59.9 18.6 43.2
a 3.2442 2.9845 20.0938 18.4609 2.7601 16.7219
b(d−1) 2.0262 1.6746 0.5750 1.3126 0.8951 1.2689
c 3.2220 6.0006 16.3037 2.4909 2.3046 5.7030
d(d−1) 0.1125 0.3407 0.5750 0.2779 0.8952 0.3852
Isolation period (h) 54 46 84 34 3 41
Table 3 Thyroid cancer Patient 1 2 3 4 5 6 7 8

therapies data for patients
treated since 2011 Age (years) 16.6 11.4 13.0 15.9 12.1 12.6 17.3 12.5
Activity (MBq) 5766 2670 2760 5650 1079 3670 5445 4610
1st T½ (h) 3.0 7.3 0.4 1.8 6.4 2.9 0.3 0.8
2nd T½ (h) 16.3 7.3 9.5 19.0 35.1 15.8 12.6 15.4
a 10.9342 11.1303 9.1096 18.8381 8.2275 10.8444 33.0670 10.3496
b (h−1) 0.2297 0.0945 1.5865 0.3880 0.1086 0.2379 2.0003 0.8540
c 33.3606 10.2054 18.1181 19.4159 1.0394 15.8970 36.9072 28.5766
d (h−1) 0.0425 0.0945 0.0729 0.0365 0.0198 0.0439 0.0550 0.0450
Isolation period (h) 45 16 18 38 6 26 37 39
13
Table 4 Precautions to be taken by thyrotoxicosis patients after discharge from the Hospital
For the first 24 h after taking the capsule:

Drink plenty of fluids and empty your bladder frequently (at least every 2 h) so that the radioiodine not taken up by the thyroid is quickly
excreted
For the first 3 days after taking the capsule
Be careful when going to the toilet not to spill any urine and avoid soiling underclothing or areas around the toilet bowl. Flush the toilet twice
and wash separately any significantly soiled clothing. If there is any spill of urine, ensure that this is immediately cleaned with absorbing paper
materials such as toilet paper or tissues. To avoid spilling of urine, males should pass urine while seated. Hands should be washed thoroughly
with mild soap after being to the toilet
Avoid close contact (closer than 30 cm) with others. If this is unavoidable, try to minimise the amount of time you spend this close to someone
For social contact, e.g., eating meals, personal and business gatherings—restrict the time you spend in these situations
Avoid shopping centres or places of entertainment where there are large crowds (3 h at 0.3 m from other persons), especially where there may
be young children
For the first 7 days after taking the capsule
Do not go to work if your job requires close contact (closer than 1.0 m) with other people
Do not go to university if you are a student (3 h per day at 0.5 m from other students)
Avoid excessive close contact (less than 0.5 m) with pregnant women and small children
Other precautions
Because radioiodine is in your saliva and sweat, for 10 days after taking the capsule
Don’t share food or drinks and wash up your own plates and cutlery separately after each meal. Also be mindful that radioiodine can be trans-
ferred through sweat to objects you may touch excessively, e.g., mobile phones, IPads etc. If you share these devices with other persons, please
wipe them with a damp cloth or paper towel before your share them
Avoid intimate contact with others such as hugging, kissing, especially with young children
Do not go to school for 3 weeks (21 days) if you are a primary school student (7 h a day [8:30 to 15:30] at a distance of less than 0.5 m from
other students)
Do not go to school for 2 weeks (14 days) if you are a secondary school student (7 h a day [8:30 to 15:30] at a distance of ≥ 0.5 m from other
students)
Sleep on your own for 3 weeks (21 days) after taking the capsule (8 h at distance of 0.3 m from other person while asleep)
Limit the duration (0.3 m between passengers) of public transport by bus to: 2 h on the day of discharge: 4 h from day 3; 5 h from day 5 and 7 h
from day 7
Air flight duration (0.4 m between passengers) should be limited to: 4 h on day of discharge: 7 h from day 3 and 12 h from day 7. Air flight
greater than 20 h can only be made 10 days after treatment
No restrictions after day 21 post treatment
Table 5 Precautions to be taken

by thyroid cancer patients after For the first 2 days after discharge from the hospital
discharge from the Hospital The radioiodine will be excreted in your urine over the next few days. Flush the toilet twice after use. If
there is any spill of urine ensure that this is immediately cleaned with absorbing paper materials such
as toilet paper or tissues. Males should continue to pass urine while seated. Hands should be washed
thoroughly with mild soap
Because radioiodine is in your saliva, don’t share food or drinks and wash up your own plates and cutlery
separately after each meal
Avoid close contact with others, e.g., hugging, comforting (or any activity where you are closer than
30 cm to the other person)
Avoid excessive close contact (less than a metre) with pregnant women and small children
Avoid shopping centres or places of entertainment where there are large crowds, especially where there
may be young children
Sleep on your own
Do not go to work if your job requires close contact (less than a metre) with other people
Do not go to school or university if you are a student
Other precautions
Limit the duration of public transport by bus to: 2 h on day of discharge; 5 h on day 2
Air flight duration should be limited to: 4 h on day of discharge: 12 h on day 2
No restriction after day 2 post discharge
The total radiation exposure per thyroid cancer proce- For neuroblastoma procedures, the radiation exposures to
dure received by all nursing staff and parents caring for the both nursing staff and parents were higher since the patients
patients during the radioiodine procedure were on average were younger (less than 10 years, see Table 2) and sicker
11.0 (minimum 3.0, maximum 22.0) and 22.0 (minimum 0.0, and hence needed more care. In addition, the younger and
maximum 87.0) µSv equivalent absorbed dose respectively. sicker the patients, the higher the exposures to the nursing
13
Table 6 Precautions to be taken by neuroblastoma patients after dis- staff and parents caring for them. For each neuroblastoma
charge from the hospital procedure, the nursing staff and parents received on average
For the first 4 days after discharge from the hospital a total of 87.0 (minimum 12.0, maximum 204.0) and 80.0
The radioiodine will be excreted in your urine over the next few days. (minimum 13.0, maximum 131.0) µSv equivalent absorbed
Flush the toilet twice after use. If there is any spill of urine ensure dose respectively. For all therapy procedures conducted in
that this is immediately cleaned with absorbing paper materials the new Therapy Room, the individual radiation exposure
such as toilet paper or tissues. Males should continue to pass urine
while seated. Hands should be washed thoroughly with mild soap to nursing staff and parents was less than 100 µSv, which is
Because radioiodine is in your saliva, don’t share food or drinks and more than a factor of ten less than the annual limit of 1000
wash up your own plates and cutlery separately after each meal µSv for members of the general public.
Avoid close contact with others, e.g., hugging, kissing, comforting (or
any activity where you are closer than 30 cm to the other person)
Avoid excessive close contact (less than a metre) with pregnant
women and small children Discussion
Avoid shopping centres or places of entertainment where there are
large crowds, especially where there may be young children Thyroid cancer patients are all in the age group 12 to
Sleep on your own and if possible in a separate room
If you have a job, don’t go to work if the job requires close contact 17 years with administered activities ranging from 1000
(less than a metre) with other people to 6000 MBq of sodium iodide (131I), while neuroblas-
If you are a university student, don’t go to university for this period toma patients are younger in the age group 4 to 10 years
of time with administered activities which ranged from 1000 to
Other precautions 5100 MBq of 131I labelled MIBG. There are great variabili-
If you are a primary or secondary school student, don’t go to school
during the first 7 days after being discharged from the hospital ties in the retention of radioactivity in the bodies of both
The duration of public transport by bus should be limited to: 2 h on thyroid cancer and neuroblastoma patients (Table 2; Fig. 3).
day of discharge; 4 h on day 2 and 12 h on day 5 For thyroid patients, the variability is due to the amount of
Air flight duration should be limited to: 3 h on day of discharge; 7 h thyroid remnant left after surgery and if there is metastatic
on day 2; 20 h on day 5
spread. Variability in the retention of radioactivity is also
No restriction after day 7 post discharge
found in adult cancer patients [8]. The retention is longer for
11
Bi-exponential neuroblastoma
Measured neuroblastoma
10
External Dose Rate (nGy/h per MBq) at 3 m from the Patient
Bi-exponential thyroid cancer

Measured thyroid cancer
9
6
Thyroid cancer
Neuroblastoma
2
0
0.0 0.5 1.0 1.5 2.0 2.5 3.0 3.5 4.0 4.5 5.0 5.5 6.0 6.5 7.0 7.5 8.0
Time after Administration (days)
131
Fig. 2 External dose rate (nGy/h per MBq) from a 8.9- year-old patient administered with 4065 MBq of I labelled MIBG for neuroblastoma
and from a 13-year-old patient administered with 2759 MBq of sodium iodide (131I) for thyroid cancer
13
110
Bi-exponential neuroblastoma
Measured neuroblastoma
100
Bi-exponential thyroid cancer
Measured thyroid cancer
90
Retained Activity (%) in the Patient
80
70
60
Neuroblastoma
50
40
30
Thyroid cancer
20
10
0
0.0 0.5 1.0 1.5 2.0 2.5 3.0 3.5 4.0 4.5 5.0 5.5 6.0 6.5 7.0 7.5 8.0
Time after Administration (days)
Fig. 3 Retained activity (%) in the body of a 8.9-year-old patient administered with 4065 MBq of 131I labelled MIBG for neuroblastoma and for
a 13-year-old patient administered with 2759 MBq of sodium iodide (131I) for thyroid cancer
neuroblastoma patients and variability depends on the spread periods ranged from 3 to 84 h while for thyroid cancer
of the tumour in the body, which could be substantial as the patients range from 6 to 45 h in both cases depending on the
radioiodine therapy for these patients is palliative for pain administered activity and hydration of the patient.
relief. As a result, the external dose rates from the two proce- Almost 95% of the activity in thyroid cancer patients is
dures are also different. For thyroid cancer patients, the half- eliminated from the body by about day 5 post treatment,
times for the fast component varied between 0.03 and 6.41 h while for neuroblastoma patients it takes longer. There is
while the slow decay component varied from 7.1 to 35.1 h. also a difference in the initial external dose rate from the
For neuroblastoma patients the variations in half-times for patients. For neuroblastoma patients it is lower (Fig. 2)
the slow and fast components were 5.3 to 28.9 and 18.6 to mainly because the uptake of the radioactivity is in the
59.9 h respectively. The difference in residual time between organs and tissues within the trunk of the body which pro-
thyroid cancer patients and neuroblastoma patients depends vides more absorption of radiation than from the thyroid.
not only on the uptake in the remnant thyroid gland of thy- In summary, the purpose-built child-friendly Therapy
roid therapy patients and tumour in neuroblastoma patients Room has been a success from a radiation safety perspec-
but also on retention of radioactivity in other organs and tive. Equally important, the child-friendly surroundings
tissues in the body. For example, the biological half-life of have helped to make the required isolation period an easier
other organs and tissues in the body is about 8 h for thyroid and more positive experience for patients, parents and staff.
cancer patients and 1.4–5 days for neuroblastoma patients With the layout of the Therapy Suite we have been able to
[15]. overcome the isolation obstacle of a thyroid cancer child
The isolation periods reported in Table 2 for neuroblas- with autism spectrum disorder [16]. He had complex needs
toma and Table 3 for thyroid cancer patients are the times and behavioural issues due to his autism, mild intellectual
derived from the clearance curves of the patients when the disability and family environment. He willingly stayed in
external ambient dose rates equivalent from the patients at the isolation room entertaining himself with the provided
3 m are less than 5 µSv/h. The actual discharge times are age-appropriate entertainment items. The radioiodine ther-
longer as they depend on the time of the day and clinical apy was successfully performed with the mother being the
consideration. For the neuroblastoma patients the isolation main carer during the isolation period receiving in total an
13
exposure of 97 µSv and the nursing staff receiving in total radioiodine retention in patients with differentiated thyroid carci-
exposures of 13 µSv. noma. Endocr Relat Cancer 16:1283–1289
7. National Health and Medical Research Council (NHMRC) (1995)
Recommended limits on radioactive contamination on surfaces in
Compliance with ethical standards laboratories: radiation health series number 38. Australian Gov-
ernment Publishing Service, Canberra
Conflict of interest The authors declare that they have no conflict of 8. D’Alessio D, Giliberti C, Benassi M, Strigari L (2015) Poten-
interest. tial third-party radiation exposure from patients undergoing
therapy with 131I for thyroid cancer or metastases. Health Phys
Ethical approval This article does not contain any studies with human 108(3):319–325
participants or animals performed by any of the authors. 9. Siegel JA, Marcus CS, Sparks RB (2002) Calculating the absorbed
dose from radioactive patients: the line-source versus point source
model. J Nucl Med 43:1241–1244
10. Willegaignon J, Guimarães MIC, Stabin MG, Sapienza MT,
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Radium Ther Nucl Med 87:171–182 I-131 thyrotoxicosis, thyroid cancer and phaeochromacytoma
4. Beierwaltes WH, Wagner HN Jr, Vought RL, Masi AT (1969) patients. Australia Phys Eng Sci Med 27(3):118–128
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13

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15455017, 2020, 4, Downloaded from https://onlinelibrary-wiley.ez18.periodicos.capes.gov.br/doi/10.1002/pbc.28160. By UFRN - Universidade Federal do Rio Grande do Norte, Wiley Online Library on [20/12/2023].

See the Terms and

Children Undergoing Radiotherapy: Swedish Parents’

Published: October 28, 2015 https://doi.org/10.1371/journal.pone.0141086

Editor: John W. Glod, National Cancer Institute, UNITED STATES

Data Availability: All relevant data are within the paper.

Participants and setting

Table 1. Theme, category, and subcategory.

Experiencing shock and overwhelming feelings.

Being anxious about the child’s health and survival.

Dealing with practical issues and sharing responsibility.

Radiotherapy includes experiencing the child’s suffering

Experiencing the child’s physical symptoms.

Experiencing the child’s emotional distress and endurance.

Radiotherapy includes experiencing intense feelings

Being close to the child and sharing similar feelings.

Feeling they are abandoning the child during the procedure.

Radiotherapy includes preparation by skilled and empathetic staff

Experiencing having confidence in the staff.

Experiencing getting used to the process over time.

Finding facilitating routines and coping strategies.

Parents’ suggestions for improvements during radiotherapy

Requesting concrete, repeated information.

Needing individualized distractions and a well thought-out procedure.

Needing routines and everyday life.

Requesting child-friendly and family-friendly staff in a child-friendly environment.

Journal of Pediatric Oncology Nursing

Parents’ Experiences and Responses to an Intervention for

1 Umeå University, Umeå, Sweden

Introduction and Review of the Literature

Figure 1. Flow sheet (A) Overview. (B) Baseline and intervention.

Participants and Settings

Figure 2. HUGO for Kids and HUGO for Teens applications.

Analyses (Quantitative, Qualitative, and Integration)

Expressing Positive Feelings.

Experiences of Using the Tablet.

Experiences of Using the CT and RT Models and Stuffed Toys.

Parents’ Suggestions for Improvements of the Intervention.

Integration of Qualitative and Quantitative Data.

Discussion and Interpretation

The Technical Solutions and Information Need to Be Developed and Tailored

Conclusion and Directions for Future Research

Declaration of Conflicting Interests

Systematic Reviews and Implementation Reports, 13, 293-329. Crossref. PubMed.

Tara Mullaney, PhD, is a design researcher at Veryday, Stockholm, Sweden.

Journal of Pediatric Hematology/Oncology Nursing

Nurses’ Experiences Caring for Children With Neuroblastoma

Sample and Recruitment

Isolated From the Patient

Nursing Clinical Support

Radiation Exposure Concern

Strengths and Limitations

Implications for Practice and Future Research

Declaration of Conflicting Interests

Cancer, 67(11), Article e28665. Crossref

Surgery, 163(2), 250–258. Crossref

Journal of Pediatric Hematology/Oncology Nursing

The Experience of Children With Neuroblastoma and Their Parents

Study Limitations and Strengths

Declaration of Conflicting Interests

34(5), 320-330. Crossref

Contents lists available at ScienceDirect

Patient Education and Counseling