European Journal of Oncology Nursing xxx (2014) 1e7

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European Journal of Oncology Nursing

journal homepage: www.elsevier.com/locate/ejon

Siblings of children with cancer e Their experiences of participating in

a person-centered support intervention combining education,
learning and reection: Pre- and post-intervention interviews
Margaretha Jenholt Nolbris a, b, *, Britt Hedman Ahlstrm a, c
a
b
c

Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Sweden, Box 457, SE-405 30 Gothenburg, Sweden
Queen Silvia Childrens Hospital, Centre for Childrens Right to Health, SE-416 85 Gothenburg, Sweden
Department of Nursing, Health and Culture, University West, SE-461 86 Trollhttan, Sweden

a b s t r a c t
Keywords:
Cancer
Child
Content analysis
Education
Intervention
Interviews
Nursing
Person centered care
Qualitative
Sibling

Purpose: To evaluate a person-centered intervention, directed to siblings with a brother or sister newly
diagnosed with cancer that combines education, learning and reection about cancer.
Method: Qualitative methods with pre- and post-intervention semi-structured interviews were conducted. Fourteen siblings aged 9e22 years participated. A qualitative content analysis was carried out.
Results: The result comprises of ve themes: grasping for knowledge about cancer, thinking for hours
and having nightmares, experiencing physical pain, being emotional in several ways, waiting for a
normal, good life despite the uncertain future.
Pre-intervention; a low level of knowledge of cancer treatments and its side effects was revealed; siblings slept poorly, lay awake thinking and had nightmares about cancer; they felt pain in different parts
of their body; they felt emotional and angry and were anxious as cancer is life-threatening; in the future
the sick child will nished treatment and recovered.
Post-intervention; siblings described having specic knowledge, felt more informed, and that it was
easier to understand the sick childs situation; they slept better, but still had a lot on their minds
regarding the sick child; most siblings said they no longer experienced pain, felt better and were happier
but could still get sad; in the future the sick child would be healthy, not exactly as before, but almost.
Conclusion: Person-centered intervention helps siblings to be more knowledgeable about the sick childs
cancer, leading to a more realistic view about treatments and consequences. Further studies of personcentered interventions for siblings are important.
2014 Elsevier Ltd. All rights reserved.

Introduction
This study focuses on the siblings of children with cancer, and
their experiences of participating in a person-centered support
intervention combining education, learning and reection via
Internet and cellphone. The new situation when a brother or sister
has cancer can present the sibling with variety of problems, such as
anticipatory grief when the loss of a close one is threatened (Hines
Smith, 2005; Lindemann, 1944). In a study comparing 29 sibling,
aged 8e24 years, of a child with cancer, all described experiencing
anticipatory grief shortly after the diagnosis or in connection with
their siblings treatment (Jenholt Nolbris et al., 2013).

* Corresponding author. Queen Silvia Childrens Hospital, Centrum for Childrens

Rights, Rondv. 10, SE-416 85 Gothenburg, Sweden. Tel.: 46 739838737(mobile).
E-mail address: margaretha.nolbris@vgregion.se (M. Jenholt Nolbris).

Other consequences for the siblings, described in various

studies, are psychosocial changes (Alderfer et al., 2010), and worries
(Enskr and von Essen, 2007, 2008; Nolbris et al., 2007; Woodgate,
2006). The child with cancer can suffer pain and anxiety, and it is
hard for both parents and siblings to watch this (Jalmsell et al.,
2010; Nolbris et al., 2007). All family members are affected when
a child gets a cancer and their everyday and social lives are irreversibly changed (Bjrk et al., 2005; Nolbris et al., 2010, 2007;
Pder and von Essen, 2008; Scout-Findlay and Chalmers, 2001;
Sidhu et al., 2006; Wilkins and Woodgate, 2005). For this reason it
is not only the sick child who needs care, but the situation of the
siblings also has to be acknowledged.
Person-centered care (PCC) described by Ekman et al. (2011) revolves around the patients own story and their everyday lives in a
partnership with healthcare staff (Zoffmann et al., 2008). Starting
point with PCC, makes it possible to give the professional carer, e.g.
the nurse a wider remit and allow them in turn the possibility of

1462-3889/$ e see front matter 2014 Elsevier Ltd. All rights reserved.
http://dx.doi.org/10.1016/j.ejon.2014.01.002

Please cite this article in press as: Jenholt Nolbris, M., Ahlstrm, B.H., Siblings of children with cancer e Their experiences of participating in a
person-centered support intervention combining education, learning and reection: Pre- and post-intervention interviews, European Journal of
Oncology Nursing (2014), http://dx.doi.org/10.1016/j.ejon.2014.01.002

M. Jenholt Nolbris, B.H. Ahlstrm / European Journal of Oncology Nursing xxx (2014) 1e7

broadening the care to include siblings and other members of the

sick childs family (Ekman et al., 2011). PCC for siblings could,
therefore, open a way for reective communication between siblings
and nurses. Providing knowledge about the siblings needs, can help
the nurses to provide support for them (McCormack and McCance,
2006). One important aspect is to make sure that the sibling has
sufcient information about their brothers or sisters cancer and
their state of health, and also knowledge about the own health
(McCormack and McCance, 2006; Mead and Bower, 2000b).
The strategy of using a variety of visual art methods in healthcare might help patients in general, regardless of gender and age,
and those close to them to communicate, understand and explain
complex situations about health and treatment (Ferm et al., 2010;
Lepp et al., 2003; Nabors et al., 2004; Nolbris et al., 2010; Rollins
and Riccio, 2002; Rollins, 1990; Wikstrm, 2001). Since 2002 in
Sweden information has been given to children with cancer and
their parents, using a special See-Hear-Do method (SHDM) based
on cartoons consisting of 100 pictures. The cartoons explain a
childs cancer diagnosis, its treatments and the side-effects, the
healthy body and the organs, the examinations in connection with
the illness, how a reduced immune defense system functions, and
family relations (Gustafsson and Nolbris, 2006). The method was
implemented as a form of education. Most siblings, however, do not
receive this education, which means that they do not have the same
information as the other members of their family.
Several studies show that siblings lack information about the
sick child (Barrera, 2000; Murray, 2002; Nolbris et al., 2007; Nolbris
and Hellstrm, 2005; Sloper, 2000). It has also been shown that it is
important for siblings to express the thoughts and feelings they
experience in a difcult family situation (Murray, 1998, 2002;
Nolbris et al., 2010; Scout-Findlay and Chalmers, 2001; Sloper,
2000; Woodgate, 2001). In an attempt to meet the siblings needs,
Internet support can be offered to improve their health and avoid
the risk of ill-health (Ancker et al., 2009; Shoshana and OrglerShoob, 2006; Tichon and Shapiro, 2003; Timpka, 2001). A study
on the use of person-centered care, took into account the childs
own resources, needs, participation and wellbeing, through using
SKYPE with preschool children, who were the target participants
(Hellstrm et al., 2012). Results from a study by Boniel-Nissim and
Barak (2013) show that keeping a personal diary, has an effect on
the relief of emotional suffering, promotes well-being, and helps in
developmental challenges.
Earlier studies reveal that the siblings are insufciently
informed, and that they, should in a safe and secure manner, have
the opportunity to learn about their sisters or brothers childhood
cancer. Siblings needs to express their thoughts and feelings concerning the sick child and the familys everyday life situation have
also been described. There is, however, a gap in the knowledge
since few interventions directed towards siblings have been reported, and even fewer are designed as accessible person-centered
support combining education, learning and reection about cancer.
The aim of this study was to evaluate a person-centered intervention, directed towards siblings with a brother or sister newly
diagnosed with cancer that combines education, learning and
reection about cancer.
Methods
A qualitative design was used for the evaluation of the personcentered support intervention. This study reports the pre- and
post-intervention interviews and of the participants reections
elicited by questions (Dochery and Sandelowski, 1999; Patton,
2002; Taylor and Bogdan, 1998). The intervention was conceived
as a complement to the ordinary education given in Sweden to
children who have cancer and their families (Gustafsson and

Nolbris, 2006), and was especially directed towards siblings. The

overarching goal for the intervention was to increase sibling
knowledge about cancer and thus reduce their anxiety.
Settings and procedures
The study was conducted in the south of Sweden from April
2010 to March 2011. The intervention took place in a large childrens hospital, where the sick child was treated. The healthcare
personnel involved in the intervention were the consultant nurses
and the sibling supporter.
Intervention
The person-centered intervention started at the earliest within 1
month after the sick child was given his or her diagnosis. The
intervention was directed towards each sibling individually and was
carried out over a period of 16e28 weeks (Table 1). The educational
approach included teaching and learning about cancer. The SeeHear-Do method was used for the learning (Gustafsson and
Nolbris, 2006). The lectures about the sick childs cancer diagnosis,
treatment and possible side-effects were held by consultant nurses.
Reection was accessed through the Reection journal, which was
a personal diary based on questions facilitating reection. It was
intended to be written and read repeatedly by the sibling and was
sent by the sibling via E-mail/cellphone to one of the authors (MJN)
in an interactive process where the sibling was continuously provided with feedback on his or her questions and thoughts.
Participants
The participants were recruited from a hospital during the
intervention period using consecutive selection. The inclusion
criteria were: being the sibling of a brother or sister newly diagnosed with cancer; the sick child had been receiving treatment for a
maximum of 1 month since the diagnosis; speaks Swedish uently;
aged 7 years or older; access to a computer/cellphone and the
Internet. If a family had numerous siblings, they were all asked to
participate, and were included if they wanted to do so. Siblings and
their families who fullled the inclusion criteria were contacted by
the rst author within 1 month of diagnosis.
In total 27 siblings were asked to participate in the intervention,
and 13 declined. Of the remaining 14 siblings, 7 (2, 2, 3) were from
three families. All the sick children were receiving treatment
throughout the study. The nal sample comprised 14 siblings (6
Table 1
Participating siblings and how they participated in different parts of the
intervention.
Participating
sibling

Interview
before
intervention

Education

Contacts in
between

Interview
after
intervention

Weeks

1
2
3
4
5
6
7
8
9
10
11
12
13
14

x
x
x
x
x
x
x
x
x
x
x
x
x
x

x
x
e
e
x
x
x
e
e
x
x
x
x
x

3
5
2
2
10
6
3
e
e
2
e
e
3
7

x
x
x
x
x
x
x
e
e
x
x
x
x
x

24
24
24
24
20
20
24
e
e
24
20
24
20
16

Please cite this article in press as: Jenholt Nolbris, M., Ahlstrm, B.H., Siblings of children with cancer e Their experiences of participating in a
person-centered support intervention combining education, learning and reection: Pre- and post-intervention interviews, European Journal of
Oncology Nursing (2014), http://dx.doi.org/10.1016/j.ejon.2014.01.002

M. Jenholt Nolbris, B.H. Ahlstrm / European Journal of Oncology Nursing xxx (2014) 1e7

females and 8 males) aged 9e22 (mean 14.1 years) representing 11

families.
Data collection
Data were collected using semi-structured interviews which were
audio recorded and then transcribed. The questions are presented in
Table 2. The interviews were conducted before and after the intervention as an act of communication between the interviewer and
respondent according to Mishler (1986) and Patton (2002). The siblings were interviewed over the telephone by the rst author who has
many years experience of working with children and adults receiving
cancer treatments. The interview contained 20 open-ended questions
concerning the siblings experiences and feelings about their brother
or sisters illness. The same questions were asked pre- and postintervention, except for an extra post-interview question concerning how they experienced the whole intervention. Follow-up questions such as What do you mean? or Can you develop your
answer? were used in order to ensure that the answers were really
understood (Mishler, 1986; Patton, 2002). At the end of the interviews, all the siblings were asked if there was anything they
wanted to add. The interviews before the intervention lasted between
6 and 20 min (mean 10 min), and those after the intervention lasted
between 1 and 19 min (mean 7 min).
Analysis
A qualitative content analysis of the text was used to draw a
systematic conclusion from the questions area and to extract the
message. This technique ensures that the analysis is reliable,
replicable and true to the text (Krippendorff, 2013). The rst step
was that both authors read the text derived from all the interviews,
in order to gain an impression of the whole. This was followed by
analysis of the text where meaning units were identied which
reected the aim of the study. The text was condensed and the
meaning units were coded and sorted into subthemes and themes.
The authors analyzed each interview individually and nally discussed the ndings together until consensus was reached.

guided by, and adhere to the World Medical Association Declaration

of Helsinki (1964). Permission was obtained from the parents to ask
their children (under the age of 18) to participate in the intervention.
Both the parents and the siblings received specically adapted
written information about the study, and written assent was also
obtained. The study was conducted voluntarily and the siblings could
end their participation whenever they wished. It was made clear that
condentiality was assured in the reporting of the study. Support
from a psychologist on the oncology team was available, if necessary,
but was not asked for by any participant. All data and information are
protected by professional secrecy, no unauthorized person has access
to the material and no single individual can be identied.
Results
The result comprises of ve themes: grasping for knowledge
about cancer, thinking for hours and having nightmares, experiencing physical pain, being emotional in several ways, waiting for
a normal, good life despite the uncertain future. This is presented
in the text below with quotations (f/m male/female and
y years). The siblings comments after completing the intervention are presented separately at the end of the result section.
Grasping for knowledge about cancer
Pre-intervention: Before the siblings had received their education from the consulting nurses about the sick childs cancer, their
descriptions show that they knew very little. They described cancer
as rare and dangerous. The information the siblings had received
was given using language that was too complex for the sibling to
understand.
Some of the siblings knew it was cancer, some knew only the
name of the diagnosis but not what it meant. They had been told by
their parents, who were the main source of information for the
siblings. The siblings lived in uncertainty about cancer treatment
and about its side effects.
Do not know that much, have not received a lot of information (F,
15y)

Ethical considerations

I think that she get drips (F, 13y)

The study was approved by the Regional Ethics Review Board

2009 in Gothenburg (527-09). The ethical considerations were

Know of the disease but do not know what it means. The medicine
is very strong and he loses hair (M, 7y)

Table 2
Questions to the siblings pre- and post-intervention.

Not so much, unusual, have various treatments and one surgery

(F, 13y)

1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
11.
12.
13.
14.
15.
16.
17.
18.
19.
20.

Do you hang out with your brother/sister now?

Did you meet in the same way before the disease?
Did you get information about your brothers/sisters disease?
What have you been told about?
Do you know which treatment he/she is getting and how it is going?
Is there anything that you are concerned about?
Is there something that youre afraid of?
Have you felt any discomfort since your brother/sister got the disease?
Have you been angry since your brother/sister became sick?
Have you had any pains anywhere?
Have you been sleeping poorly?
Have you felt it was your fault that your brother/sister became sick?
Have you had thoughts about your brother/sister having a
life-threatening illness?
Are you wondering about of your brother/sisters future?
Can you talk to someone about your feelings?
Can you talk to someone about your thoughts?
Are you more alone now than before the disease?
Do you go to school/work?
Are you afraid of becoming ill with cancer yourself?
Do you have anything to add?

Extra question for the post-intervention interview: Do you have any comments after
completing the intervention?

Post-intervention: All siblings said they felt more informed

about the treatment and side effects. They described having more
specic knowledge e.g. about how the immune defense system
functions, what happens in the body during chemotherapy, how
the blood values makes the sick child tired and why the sick child
loses their hair. The education made it easier to understand what
the sick child was going through and to comprehend what the sick
child tried to convey about their own situation. It was also easier to
follow the parents reections and the parents talked to the siblings
more after their education about cancer. The siblings were able to
give a more nuanced picture of risks and side effects. They also
learned that there were healthcare professionals who had the
special task of talking to the siblings when they needed to talk.
Ive been told everything that mom and dad had. Good to have the
same information. He is in chemotherapy (F, 13y)
Yes I can, and the basics of the disease. So I think I have a lot of
knowledge about it and side effects and blood values (M, 14y)

Please cite this article in press as: Jenholt Nolbris, M., Ahlstrm, B.H., Siblings of children with cancer e Their experiences of participating in a
person-centered support intervention combining education, learning and reection: Pre- and post-intervention interviews, European Journal of
Oncology Nursing (2014), http://dx.doi.org/10.1016/j.ejon.2014.01.002

M. Jenholt Nolbris, B.H. Ahlstrm / European Journal of Oncology Nursing xxx (2014) 1e7

Ive learned that the orange cells cover the wounds. Tired, because
there are no red blood cells. White cells with military hats remove
things you should not have in your body. Gold medicines make you
lose your hair, and are also good at removing and reducing the
tumor (M, 10y)

Thinking for hours and having nightmares

Pre-intervention: The siblings described how the quality of
their sleep changed in connection to their sister or brothers
cancer diagnosis; at the beginning, it was hard for some of them to
fall asleep and they slept poorly. Earlier it was easy to fall asleep
pre-diagnosis, but now they could wake often, and lie awake
thinking for hours about what might happen to the sick brother or
sister. This was not the same for all siblings. Some had nightmares
about the brother or sisters cancer. They woke up and fell asleep
again and were happy that the nightmares not were real. The
siblings said that it could also be a problem to wake up in the
morning because of the frightening dreams they had had during
the night.
It was very easy to fall asleep earlier but now I lie awake. It is not
like me. Thinking a lot about what might happen (F, 22y)
Ive had nightmares. I dream about everything, I do not really
remember but every dream its about it, nightmares. I wake up and
go back to sleep. Im glad its not real, and yes, I am quite tired (F,
12y)
Post-intervention: Most of the siblings described they were
sleeping better, but still there was a lot on their minds concerning
the sick child. When the sick child was at the hospital the siblings
were worried, and that affected how they slept. Some of the siblings
explained that they deliberately tried not to think too much about
the sick child, and in that way they succeeded in sleeping quite
well.
Sometimes it goes really well, and some nights it is barely at all so
its a little different. You brood perhaps without really thinking
about what to think, because I think its something you know, that
she is at the end of it all, that makes you a little restless, you get
tired from it (F, 22y)
I sleep well but I have a lot of nightmares. They are about her
getting worse (F, 12y)

Experiencing physical pain

Pre-intervention: Most of the siblings described how they
experienced pain in different parts of their body. The pain could
appear as a headache or an ache in the heart or stomach, which
really hurt. They could also feel sick. In some cases the siblings used
painkillers to relieve the pain.
I have just got a bad heart, it gave me a lot of pain (M, 18y)
Then I had a lot of pain in my head and in my stomach so Ive taken
some tablets for my headache (M, 14y)
Post-intervention: Most of the siblings said they no longer
experienced pain in their body or felt any discomfort. However,
some siblings said they still had headaches sometimes.
Its better now but I still get a little pain in the head sometimes. I
rest then (F, 12y)
No discomfort and nothing physical (M, 14y)

Being emotional in several ways

Pre-intervention: The siblings described how they felt everything moved so fast and that life was no longer as much fun as
before. It was affected by cancer. The participants said they were
emotional in several ways, e.g. they easily got angry in school and
with their schoolmates. They were also angry with their parents
and their healthy brothers and sisters. They were anxious as they
knew that cancer was life-threatening and that their brother or
sister could die, and that they too could get cancer and also die.
Mostly, they kept their feelings to themselves. Others tried to talk to
their parents but the parents were too sad and emotional and were
unable to comfort them, and therefore it was better to talk to
friends. The siblings said that they were also more emotional,
wanting to cuddle, and hug and that they tried to be as kind as
possible and give the sick child their attention. They were extra
careful towards their brother or sister and chose to spend a lot of
time with the sick child watching TV and paying attention to them.
Not as much funny anymore (M, 7y)
More emotional now (F, 22y)
Be with him, be kind, give him attention (M, 18y)
Will he survive? (M, 10y)
Post-intervention: The siblings felt better after the intervention
and were happier but could still get sad. Thoughts about the cancer
went round in their minds and they felt as if they were going crazy.
Some of the siblings could still get angry with their parents and
healthy sibling or sad when e.g. someone wrote bad things on the
sick childs blog. Feelings of loneliness could occur when the sick
child was being treated in the hospital, or when the sick child was
screaming at home, and they had to leave the room.
Happier but I still feel sad when I read something on her blog or
when you hear something (F, 22y)
I walk around and think about it all the time, eventually become
almost insane. Thats the only thing you think about. Do you understand? I can take a break sometimes, but there it is always there
somewhere (M, 14y)

Waiting for a normal, good life despite the uncertain future

Pre-intervention: When the siblings talked about the future
they all wished that their brother or sister had nished treatment
and recovered. Everything would be ne and the sick child would
still be alive. Some siblings thought their brother or sister would
have a normal, good life and perhaps even would have children of
their own. The siblings also understood that the treatment could
take time. There would be changes for all members of the family,
which would be stronger with better relations and bonds. The
siblings simply appreciated the family more now. Cancer treatment
could be more or less successful, with ups and downs, and if the
brother or sister did not recover and get healthy again it would be
very bad for the whole family. If the sick child died, then everyone
would suffer.
In two years, the treatment is nished . and she is alive (F, 13y)
That she will get better and be healthy (M, 17y)
He has got stronger and so has the family. And to give everything
more value or so. You think a lot longer than you did before and so.
So I kind of appreciate everything a lot more than I did before (F,
15y)

Please cite this article in press as: Jenholt Nolbris, M., Ahlstrm, B.H., Siblings of children with cancer e Their experiences of participating in a
person-centered support intervention combining education, learning and reection: Pre- and post-intervention interviews, European Journal of
Oncology Nursing (2014), http://dx.doi.org/10.1016/j.ejon.2014.01.002

M. Jenholt Nolbris, B.H. Ahlstrm / European Journal of Oncology Nursing xxx (2014) 1e7

Post-intervention: The siblings thought and wished that the sick

child was going to get better and be healthy. It will probably be very
good when the sick child gets healthy again, not exactly as before,
but almost. There was a yearning for the treatment to end, for all
the blood values to be ne and for the child to start school again.
The siblings themselves would also feel better when the treatment
for the child with cancer was over. Some of the siblings did not
want to think about the future and wanted rather to live in the
present moment. At the same time they described an uncertain
future with periods of cures and pain. The sadness will remain in
their life and it will not be same as before. Some siblings did not
know how things would be as they were uncertain about what the
next day would bring. They could not let go of that idea, and then it
is hard to think ahead rather than about what is happening now.
However, it was important for the siblings to think positively and if
things did not go well for the sick child, they would deal with that
situation when it happened.
That she will get better and get well. Myself, I will feel better when
the treatment is over (M, 12y)
I cannot wait until almost a year has passed, my sister can start
school again, all her values are good again, everything is positive
again. There will always be pain and sadness in life (F, 22y)
I think it looks quite bright, it will go well. I hope everything does.
Think positively as well and if it does not go well, you have to take
care then based on the situation (M, 14y)
I think its going to be good but I have not thought about it so
much. I probably live more in the present moment (M, 14y)

Comments after completing the intervention

None of the siblings had experienced the intervention as hard
or that it made them cry. One sibling felt it was good to have
thought about things but at the same time was a bit shaken
because he usually did not talk much about his situation. The
reections came moderately often and the siblings decided
themselves when they felt ready for them and had time to sit and
think and answer. They said it was good to talk about things that
otherwise they would not have had any response to. It was nice to
share their thoughts and feelings and ventilate them even if it was
just a simple matter of how they felt. The siblings said they were
pleased and grateful to have been contacted and not forgotten,
and the best part was that it was easier to talk to a person, they
never met before.
Discussion
The main nding in this study was that the person-centered
intervention, which combined education, learning and reection
about their sister or brothers cancer, to some extent supported to
the siblings. The intervention helped them to be more knowledgeable about the sick childs cancer, which in turn helped them to
reect more realistically on the treatments and their consequences
as well as on the future. The education and learning about the sick
childs cancer and the siblings situation, as well as the reections,
were directly addressed to the siblings and not to any other family
members (Leplege et al., 2007). This seems to be a useful approach
suitable for children and young persons, acknowledging their situations. In addition, the ndings in a way mapped, experiences
and the possible state of the siblings mental and physical health,
which emphasizes the importance of a person-centered intervention specially directed towards siblings.

A qualitative descriptive method with pre- and postintervention interviews with semi structured guided questions
was used to evaluate of the intervention in this study (Dochery and
Sandelowski, 1999; Patton, 2002; Taylor and Bogdan, 1998). The
interview method was well-suited to the purpose of the study
which concerned education, learning and reection about cancer.
Several of the siblings responded at night or when they themselves
wanted to and it was, therefore, difcult to get answers by phone.
Siblings who e-mailed found it convenient that they did not have to
meet someone, as in a face-to-face interview. Regarding their
vulnerable situation, the siblings narrated about their experiences
and thoughts about how to manage the fact that life still has to go
on. A qualitative interview with a child or young person could, in
itself, be a good thing allowing the participant the possibility to
reformulate their thoughts and insights (Kortesluoma et al., 2003).
The siblings were, as described earlier, encouraged to tell their
own story about their experiences of everyday life in a partnership
with a healthcare nurse researcher, by for instance using e-mail and
a cellphone. This is a good basis for PCC in eHealth (Ekman et al.,
2011; Hellstrm et al., 2012; Sparud-Lundin et al., 2013; Zoffmann et al., 2008). By using PCC in combination with information
and communication technology between siblings and nurses and
other healthcare professionals, siblings can be given personalized
information about their brother or sisters cancer illness and health
(Ekman et al., 2011; McCormack and McCance, 2006; Mead and
Bower, 2000a). Equally important is knowledge about their own
health. This became evident in this study when the siblings
described symptoms of their own ill health as a consequence of the
sick childs cancer.
At the end of the intervention the siblings were asked about the
whole process and none thought it was hard or that it had made
them cry. To talk, share and reect on their thoughts and feelings,
even if only on simple matters, was important. This is in line with
other research describing the needs of siblings of seriously ill
children (Nolbris et al., 2010). The siblings in the present study
were pleased and grateful to have been contacted by someone from
healthcare, and that they were not forgotten. This is in line with
studies from other medical disciplines, mental health for instance
where Ali et al. (2012) studied adolescents and young persons who
supported a family member or a friend with mental illness and
described how they felt abandoned by the healthcare providers,
and felt to fend for themselves when they felt bad and needed
support. This should encourage nurses and other healthcare professionals to invite family members, and especially siblings to
participate in information, education and support groups related to
the sick child. Talking to people they had never met before, was no
problem.
Three of the siblings had some form of dyslexia and could not
write down their answers in an E-mail. This information did not
emerge when they were included in the study. These siblings could
not be excluded for ethical reasons or because of their dyslexia. We
do not believe that the three siblings would have answered
differently, given their evaluation that they were able to express
everything they experienced in their answers to the questions.
Some other reasons mentioned by parents and siblings for the
siblings not participating in the intervention, were that the family
could not afford to pay to travel to the city where the intervention
took place. Other reasons were that it was too far to travel and some
families had no time to spare, or were afraid to participate because
some relative did not have a residence permit. Some other parents
believed that the siblings would be sad and upset if they participated in the intervention and therefore did not allow them to
participate. However, a sibling under the age of 18 is a child, and has
rights according to the UN Convention on the Rights of the Child
(UN, 1989). This means that siblings in their new situations with a

Please cite this article in press as: Jenholt Nolbris, M., Ahlstrm, B.H., Siblings of children with cancer e Their experiences of participating in a
person-centered support intervention combining education, learning and reection: Pre- and post-intervention interviews, European Journal of
Oncology Nursing (2014), http://dx.doi.org/10.1016/j.ejon.2014.01.002

M. Jenholt Nolbris, B.H. Ahlstrm / European Journal of Oncology Nursing xxx (2014) 1e7

brother or sister with a cancer should be given more attention. They

may end up in situations where they could be maltreated, or
forgotten. They should be protected against discrimination, by
parents, staff and their network. The healthcare professionals are
also required to promote the best interests of the siblings, to allow
them to be involved in the sick childs care process. Siblings also
have the right to participate in situations that are important for
them, as is emphasized in Articles 2, 3, 6 and12 (UN, 1989). They
have the additional rights to enjoy a full physical or mental life and
dignity, rest, leisure, and spare time, despite their situation as a
sibling of a child with cancer, as is recommended in Articles 13, 16,
23, 24, 31, 42 (UN, 1989).
Limitations
One limitation of this study could be that all not all the siblings
invited could participate which may have limited the data. Not all
siblings had computers and some parents did not allow the siblings
to participate. Other reections are that some siblings had function
disabilities and were from other cultures. This could have had a
negative impact on the diversity of the data. Despite of these limitations in the ndings, the study results contribute to our knowledge about siblings experiences of participating in a personcentered support intervention.
Implications for further research
It is important to develop further a direct sibling perspective in
where siblings are encouraged to talk about their own experiences
in their daily lives. A future task might be to strengthen the PCC
perspective through, for instance, transferring the intervention to
interactive media such as Skype. Such PCC would be useful in
eHealth in conjunction with education, learning, reection and
communication, in providing support for the siblings regardless of
time of day, technology or geographical place.
Conclusions and implication for practice
This study shows that a person-centered intervention directed
to siblings with a brother or sister newly diagnosed with cancer
that combines education, learning and reection about cancer
delivered via the Internet and cellphone has an impact on the
siblings ability to manage their normal everyday life. The intervention could help siblings to become more knowledgeable about
the sick childs cancer, leading to a realistic view about treatment
and its consequences as well as about the future. Children are
capable to communicating their experiences to professionals such
as a nurse, that they do not know personally. This should encourage
nurses and other healthcare professionals to use models for personcentered support as well as to use more eHealth in healthcare to
meet the need for the siblings to be given simple and economical
support.
Conict of interest
The two authors declare that they have no conicts of interest.
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Please cite this article in press as: Jenholt Nolbris, M., Ahlstrm, B.H., Siblings of children with cancer e Their experiences of participating in a
person-centered support intervention combining education, learning and reection: Pre- and post-intervention interviews, European Journal of
Oncology Nursing (2014), http://dx.doi.org/10.1016/j.ejon.2014.01.002