European Journal of Oncology Nursing 16 (2012) 375e379

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European Journal of Oncology Nursing

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

A small scale, qualitative focus group to investigate the psychosocial support

needs of teenage young adult cancer patients undergoing radiotherapy in Wales
Clare L. Davida, *, Keren Williamsonb, D.W. Owen Tilsleyc
a
Radiotherapy Department, Singleton Hospital, Swansea SA2 8QA, UK
b
Department of Radiography, School of Healthcare Studies, Cardiff University, Heath Park, Cardiff CF14 4XN, UK
c
Velindre Cancer Centre, Whitchurch, Cardiff CF14 2TL, UK

a b s t r a c t
Keywords: Purpose: The purpose of this study was to evaluate the psychosocial support needs of teenage young
Psychosocial adult cancer patients undergoing radiotherapy in Wales.
Young adults
Method: A focus group interview was utilised to encourage dialogue and collect rich data. Transcripts
Cancer
Support
were analysed through open coding and content analysis. Emergent themes in terms of psychosocial
tensions were identified and categorised as external stressors and intrinsic anxieties.
Findings: All participants indicated a desire to maintain their identity as individuals and resume as
normal a life as possible throughout the treatment process and beyond. Peer support was deemed as vital
to achieving this goal. Participants demonstrated a distinct sense of unity and group cohesion throughout
the session with suggestions that they considered themselves to be very different from what they
thought of as ‘usual cancer patients’. A range of information was offered prior to radiotherapy however
there was variation in the efficacy of this provision between centres. At variance with literature, issues
related to body image were not overtly demonstrated as significant. Support services provided by
external organisations were not being signposted.
Conclusion: Psychosocial support is vital to the psychological recovery and wellbeing of young adult
cancer patients. Findings suggest that issues related to peer support and age appropriate services and
information are not being addressed within current service provision. Key staff within radiotherapy
should be identified to ensure that the specific needs of this distinct patient group are met.
Ó 2011 Elsevier Ltd. All rights reserved.

Introduction B Body image and physical changes,

There is evidence to suggest that teenage and young adult
cancer patients (TYA) within the18 to 24 year old age group
suffer greater psychosocial distress than older cancer patients
which subsequently has an impact on their ability to cope with
diagnosis and treatment (Pearce, 2009; Roberts et al., 1997).
Psychosocial care and support for young patients within this age
range are particularly important due to the unique needs of this
group in relation to developmental challenges and survivorship
issues (Pearce, 2009; Enskar and von Essen, 2007). Eden et al.
(2005) and Roberts et al. (1997) recommend that psychosocial
support for TYA patients should be directed at six distinct areas
of need;
* Corresponding author.
E-mail address: cldavid@hotmail.co.uk (C.L. David).
B Issues of fertility;
B Peer and social relationships,
B Education,
B Independence and autonomy,
B Late effects.
Each of these issues is compounded by the standard of care
afforded by cancer service providers, making the need for effective
psychosocial support fundamental to the management of coping
strategies for TYA cancer patients. Pearce (2009) identifies only
a few studies that include TYA patients within their sample group,
suggesting a lack of evidence to support the drive for improved
service provision. Hasse and Phillips (2004) propose that the only
way to improve the care given to these patients is to provide an
evidence base through targeted research involving the patients
themselves. This is supported by Hendricks-Ferguson (2006) who
attributes the lack of understanding of the unique needs of these
patients to a dearth of research and consequent lack of progress in
the management of cancers in this group.

1462-3889/$ e see front matter Ó 2011 Elsevier Ltd. All rights reserved.
doi:10.1016/j.ejon.2011.08.002
376 C.L. David et al. / European Journal of Oncology Nursing 16 (2012) 375e379
This paper does not propose to address the scope of issues
associated with psychosocial support for TYA patients, instead
trigger questions posed to the focus group concentrated on matters
related to peer support and physical attractiveness since these were
noted as prominent themes within literature (Kelly and Gibson,
2008; Eden et al., 2005; Hasse and Phillips, 2004).
Peer support
The continuation of close contact peer support through treat-
ment and the negative impact of peer and partner withdrawal has
been widely reported as being of significant importance to TYA
patients (Ramini et al., 2008; Grinyer, 2007; Albritton and Bleyer,
2003; Roberts et al., 1997). During the formative adolescent years,
TYAs will actively seek independence from parents. With this
separation, peers can become equal or more important sources of
social and emotional support. The benefits of this support were
demonstrated in a study whereby TYA patients who maintained
close contact with their peer group throughout treatment self-
reported higher levels of self-esteem (Tarrant et al., 2006).
TYA patients with cancer aspire to emulate their healthy peers
and want to encounter the typical experiences of young life;
however changes in physical appearance, fatigue and the high risk
of infection that results from cancer and its treatment can often
lead to depressive moods and isolation from peers (Corey et al.,
2008). An understanding of the impact and consequences of
these issues would nurture empathy in peers and encourage the
development of support mechanisms. In spite of this, in a survey of
271 TYA patients showed that 81% (n ¼ 219) of respondents stated
that no information had been offered to their peers to explain the
cancer, its treatment or side effects (Smith et al., 2007). Further-
more, it is unlikely that the TYA patient will have referent peers
with the same condition or illness or suffering the same side effects
who could act as a source of information and support. For that
reason it is crucial that every effort is made to facilitate means by
which the TYA patient could access support from healthy peers and
guidance from other TYA patients with cancer (Morgan et al., 2010).
Physical attractiveness
Physical attractiveness and body image are of particular impor-
tance to this group of patients. Through adolescence into young
adulthood, their appearance will be under scrutiny by others and,
notably, by themselves more than at any other time during their lives
(Abrams et al., 2007). Treatment for cancer, as well as the disease
itself, will have a significant effect on physical appearance and
a profound impact on perception of body image and self-esteem
(Williamson et al., 2010). Enskar and von Essen (2007) demon-
strated a positive correlation between physical distress and
increased changes in physical appearance in TYA patients, the
consequences of which were more prevalent during the treatment
period than after. The study recommends that professionals caring
for young adults during this time should be alert to problems asso-
ciated with this distress in order to instigate the necessary support.
Albritton and Bleyer (2003) suggest that the negative perception
of body image caused by cancer treatment is often a hidden
problem with young adult patients since they appear not to be
comfortable with talking about the unattractiveness they may be
feeling. These body image concerns can continue to affect
psychological wellbeing even when physical changes attributable
to treatment are no longer evident (Pendley et al., 1997; Abrams
et al., 2007). Initial effects of radiotherapy treatment, such as skin
reddening and hair loss, can persist for some time after completion
of treatment. However, late effects of radiotherapy treatment, such
as permanent skin pigmentation changes and fibrosis, may not
become apparent for months or even years. This would suggest that
the psychological issues associated with self image for these young
patients would also continue to have a bearing on their return to
normalcy for a significant period of time. In spite of this, Stiller et al.
(2006) state that counselling services focused on self image and
other needs of TYA patients are not easily accessible or available
even though the efficacy of such a provision is acknowledged.
The aim of this project was to facilitate a small scale qualitative,
focus group for TYA patients who had received radiotherapy
treatment within Wales in order to identify any issues related to
psychosocial support.
Method
Data collection
Focus group interviews are frequently used in health services
and evaluative research in order to access the perspectives of
a specific group of people. Focus group interviews encourage
participation since the group shares a common experience and
a sense of unity which gives ‘permission’ to talk about issues not
usually raised, this in turn increases the groups’ usefulness
(Barbour, 2008; Krueger and Casey, 2000; Greenbaum, 2000;
Moule and Goodwin, 2009).
This project was established as being a service evaluation by the
Wales Multi-Centre Research Ethics Committee, with the regional
cancer centres acting as Participant Identification Centres for the
purpose of recruitment. As such, the project did not require ethical
approval prior to the focus group being undertaken. Inclusion
criteria stated that all participants must have been between the
ages of 18 and 24 years on commencement of a course of radical
radiotherapy treatment for any cancer type at one of the three
regional cancer centres in Wales. Participants must have completed
treatment within 12 months of the focus group being undertaken.
In order to be invited to take part, all participants were assessed by
the consultant oncologist in charge of their care as physically and
emotionally recovered from treatment and all were able to give
informed consent.
Trigger questions for the semi-structured focus group interview
(Table 1) were designed to facilitate discussion in relation to the
psychosocial support received prior to and during radiotherapy
treatment and also to establish if any improvements to the service
are necessary.
Sample
In accordance with the inclusion criteria, 7 young adult patients
were identified as potential participants within the three regional
cancer centres. Participants were approached by their respective
consultant oncologist and given information relating to the study.
Participants were provided with contact details of the research
team and asked to contact the team and give consent should they
wish to take part.
Table 1
Focus Group Interview e Trigger Questions.
1. Tell me your experience of radiotherapy.
2. Describe the information you received in relation to your radiotherapy
treatment.
3. Describe how you told your friends and family about your diagnosis.
4. Describe how your friends reacted to this.
5. Explain how the side effects of treatment impacted upon your daily life.
6. Were you told of any age specific support groups for Teenage Young Adults
with cancer?
- If so can you describe the support they provided to you.
 C.L. David et al. / European Journal of Oncology Nursing 16 (2012) 375e379
Three female participants attended the focus group; two
participants (aged 23 and 22) had received treatment in Centre 1
and one participant (aged 20) had received treatment in Centre 2.
The discussion was recorded on 2 voice recorders and transcribed
by a member of the research team. The group had a range of cancer
diagnoses, however the course of treatment undertaken and the
number of fractions of radiotherapy received was similar for all
participants. One male participant (aged 24) who had received
treatment at Centre 3 could not attend the focus group but gave his
responses to the trigger questions in written format. This partici-
pant was keen to share his views even though he was unable to
attend the focus group. Subsequently, his responses were included
within the final analysis.
Data analysis
Dealing with the volume of data collected as a result of focus
group interviews is acknowledged as being challenging where
lengthy narratives are required to be transcribed for analysis. In
qualitative analysis, objectivity in this analysis is aided by imposing
structure on the data through a process of open coding and content
analysis (Moule and Goodwin, 2009).
The verbal data recorded was transcribed into a word processed
format, providing an accurate record of the interactions between
the participants and interviewer. Listening to and manually tran-
scribing these interactions allowed immersion in the data which
enabled concepts to emerge intuitively. Using open coding, the data
was analysed and organised into key themes and categories by one
member of the research team. These were agreed with and refined
by a second member of the team before sending to the participants
for comment. No comments were returned, and the analysis was
accepted as a true and accurate representation of the views of the
participants.
Findings
Through content analysis and coding of the transcribed data,
sources of psychosocial tensions emerged. These were categorised
as extrinsic stressors and intrinsic anxieties.
Those tensions identified as extrinsic stressors within the data
were further reduced into themes noted as issues of peer support
and information support. Themes within the category of intrinsic
anxieties were noted as issues of personal identity, group cohesion
and physical appearance.
Extrinsic stressors
 Peer Support
Interestingly, although peer support was shown to be an
important factor by all participants, there were marked differences
in the reactions of peers between participants. In agreement with
Fegg et al. (2007), the participants stated that they had all informed
their friends shortly after they were diagnosed, Participant B
stated:
“I phoned my best friend as soon as I was told.”
This participant had contacted her best friend even before her
immediate family showing that within this age group peers are
often deemed as, if not more, important than family members. In
terms of reaction to the news of diagnosis, there was a discernible
difference between the friends of the females and the friends of the
male participant. Overall, the peers of the female participants
continued to act as usual and were very supportive. Participant A
stated:
377
“They [peers] helped me forget and acted like normal and I felt
fine then because you just carry on with your day to day life.”
The female participants also did not feel that their peers needed
any extra information than what they themselves provided,
Participant A stated:
“They [peers] knew everything from what I was telling them and
they knew everything they wanted to know.”
However the male participant stated that his peers were:
“.shocked by his diagnosis and didn’t know what to say.”
He also stated that he would have liked to have had information
in the form of a DVD to give to his peers so that they could gain
a better understanding of his treatment. This concurs with several
other works (Roberts et al., 1997; Ramini et al., 2008 and Albritton
and Bleyer, 2003) that suggest the need for more support to be
offered to peers of TYA patients in order to minimise the risk of peer
withdrawal. The difference in response shown by the peers of the
male and female TYA patients is interesting and has not been noted
in related literature. However, due to the limited number of
participants involved in this study it is not possible to comment
further on this although it may be a topic of interest for further
research.
 Information Support
It was apparent from the views of the participants that there
was a difference in the quality of treatment information given to
each of them prior to and during their radiotherapy. Participant A,
who attended a tour of the radiotherapy department, felt that she
had been provided with sufficient information and stated:
“I felt really comfortable with it [the treatment] and knew exactly
what to expect.”
However, Participant C stated that she:
“[I] didn’t realise things would move so fast and unless I asked
questions then I didn’t really get any answers”.
This lack of preparatory information was reiterated by Partici-
pant B who had received treatment at the same centre. During the
course of their treatment, all participants noted that the support
given to them by radiotherapy staff was of a high standard. All
participants felt that the treatment staff were very caring and
ensured that they were coping well with the treatment. There were
a variety of other professionals included within the participants’
support teams such as nurses, physiotherapists, dieticians and
social workers. Participants reported that they were happy with the
support received from most of these services, however Participant
C stated:
“Sometimes if I wanted to speak to her [the social worker], I tried
to ring her but I couldn’t get through. There was always no
reception [no answer].”
Differences in support within and between multidisciplinary
teams and regional cancer centres needs to be addressed so that
standards are set and protocols created in order to ensure equity of
provision and to advance the current service.
Further to this, advice and information relating to access of age
specific services and financial support services was not offered to
any of the participants. None of the participants had been directed
towards TYA specific support services, such as the Teenage Cancer
Trust or CLIC Sargent, and only one participant had been informed
about the financial support they were entitled to. Participant B
stated:
378 C.L. David et al. / European Journal of Oncology Nursing 16 (2012) 375e379
“I only got told about the MacMillan grant by other people, it
was only down the line I was told about stuff like travel
expenses.”
Only one participant felt that the information relating to treat-
ment they had received was specific to their age and all felt that
they would have liked to have received more information on how
radiotherapy would affect people of their age, particularly with
regard to late effects. This concurs with the observation by Stiller
et al. (2006) that age specific information and services are
needed by patients within this age group but are not commonly
provided.
Intrinsic anxieties
 Personal identity
One psychosocial characteristic identified by both Eden et al.
(2005) and Roberts et al. (1997) is a need for independence and
this was noted as a running theme throughout the focus group
discussion. All participants showed a distinct inner strength that
seemed to present itself in both positive and negative ways; from
optimism and not wanting to make a fuss about treatment to denial
and feelings of invincibility. For example, Participant B did not feel
the need to attend a tour of the radiotherapy department and
stated:
“I felt like I was quite a strong person and would not have to go
but actually I really did need to go.”
On her first day of treatment she was overcome by fright and
became upset and felt that this could have been avoided if she
had known what to expect and had attended the tour offered.
Another participant felt that she was never in the mindset for
asking questions because she had not been ill before she was
diagnosed and didn’t see herself as ill, here denial is apparent and
may have stopped the participant from asking questions that
would possibly have increased her understanding of treatment.
Feelings of invincibility were also shown when Participant A
stated:
“The doctor was like you are definitely going to lose your hair
and I was saying no, no I won’t.”
However, continuing to lead a normal life, even whilst under-
going treatment, was by far the most prominent sign of indepen-
dence identified within the transcript and all participants used
phrases such as:
“I just want to forget about it” and “I just want to move on.”
This corresponds with (Olsen and Harder, 2009) who indicated
that it was important for TYA patients to remain the same person in
the eyes of friends and family despite the disease and its implica-
tions. These different examples of inner strength need to be
considered when providing psychosocial support as these feelings
can mask underlying fears and upset about treatment and side
effects. There are times when the strength breaks and support is
essential to ensure that these hidden emotions are properly
addressed, Participant C stated:
“You can’t be strong all the time, she [partner’s sister] asked me
one thing and because I had been strong for ages, I just burst into
tears.”
These types of emotional breakdowns had also affected another
participant after her radiotherapy had finished suggesting that
access to support must continue throughout the follow up stage of
treatment.
 Group Cohesion
The participants felt that they were different from other people
with cancer, and suggested a sense of belonging and shared iden-
tity. Participant A stated:
“By the time they kick in [long term effects of treatment] they
[older adult cancer patients] will be dead or they would be 100 or
something but that’s not the case with us.”
It was interesting to observe the bond created between the
participants within the short period of time of the session,
demonstrating the underlying group cohesion. The participants
also asked one another questions about their experiences of
treatment and some rather intimate questions about personal
feelings and relationships. The young adults appeared comfortable
with addressing these issues between themselves suggesting
a sense of security and shared empathy.
In agreement with both Krueger and Casey, 2000 and
Greenbaum (2000), this demonstrated focus groups to be
superior to one-to-one interviews in collecting rich data as the
group discussed more topics and issues than were originally
intended. Participants suggested that open discussion and
support sessions with other young adult patients would be more
beneficial than counselling sessions on a one-to-one basis,
further reinforcing the notion of a group identity. Participant C
stated:
“It’s nice if they are the same age as you as you can make friends
then and talk about stuff.”
This further underlined how this group of patients considered
themselves to be different to other cancer patients. The concept of
group support sessions has been considered previously by (Cassano
et al., 2008) and was found to be of value to TYA patients as they
were engaging with others who could truly relate to their own
experience of cancer and treatment. However, it should be noted
that although the benefits of supportive group discussion was
acknowledged by the group, participants stated that they would
probably not have attended group sessions and stated definitively
that they would not have attended individual counselling if this had
been offered.
Paradoxically, these participants did come to the research group
meeting with the main reason stated for accepting the invitation
stated as being a desire to improve the service for future young
adults on treatment. Participant C stated:
“I want to forget about it [treatment] but I don’t mind doing this
sort of thing to help others through this.”
The other participants also stated similar reasons and here more
than at any other time during the session the sense of unity in their
wish to help others of their ‘group’ was made apparent. This
correlates with (Cassano et al., 2008) who reported that TYA
patients who had survived cancer and treatment had an altruistic
desire to help others through the journey and demonstrate that it
was possible to resume a normal life.
 Physical Appearance
Intriguingly, although self image and changes to physical
appearance due to treatment are noted as being of particular
importance to this group of patients (Albritton and Bleyer, 2003
and Elwell et al., 2011), it was mentioned very little throughout
the session. When direct questions were asked the answers given
were brief and even though all had experienced physical changes,
only Participant B admitted to becoming emotional over a physical
change, stating:
 C.L. David et al. / European Journal of Oncology Nursing 16 (2012) 375e379
“When my hair started falling out, they [specialist oncology nurses]
were there for me because I was getting very upset over it.”
All the participants had completed their treatment and have no
visible reminders of it and the possibility of a difference in anxiety
when visible signs of treatment are apparent cannot be determined
from this paper. Although physical changes were no longer evident,
Pendley et al. (1997) suggest that underlying body image concerns
may still affect the psychosocial wellbeing of TYA cancer patients.
Williamson et al. (2010) concluded that some TYA patients
demonstrate resilience to these issues and manage appearance
related changes by adapting to their new image. This appears to
agree with the findings from this focus group but differs from the
opinion of Albritton and Bleyer, 2003 who proposed that TYA
patients hide the stress caused by negative self-appearance and
find it hard to adapt after treatment is completed. More in-depth
information related to body image changes that are a conse-
quence of cancer treatment therapies, such as radiotherapy, may be
of benefit to this patient group and suggests itself as an area for
further enquiry.
Limitations
There are acknowledged limitations to this study due to the
small number of participants recruited. However, from the three
regional cancer centres in Wales, only 7 young adult cancer patients
were identified as fitting the inclusion criteria therefore, with 3
attending the focus group and the written responses of the one
male patient, the views of 57% (n ¼ 4) of these patients were
included in the analysis.
In view of the small local population recruited the findings of
this study are not necessarily representative of the wider TYA
population. Yet, their opinions are important and have been shown
to both agree with and differ from current thinking on TYA specific
treatment support. There is a need to acknowledge that the views
of only one male TYA patient were included and as he had not
attended the focus group it was not possible to explore his
responses to the trigger questions. In order to add credibility to its
findings, this study could be used as a basis for a larger scale project.
Conclusion
The findings of this study suggest that psychosocial support is
vital to the continued psychological recovery and wellbeing of TYA
cancer patients. Issues of peer support and age appropriate infor-
mation are of particular importance to this group of patients and
services should be provided to address these needs. Although for
the most part contemporary literature suggests issues of body
image to be of significance to TYA cancer patients, this was not
overtly expressed by this group of participants. TYA cancer patients
demonstrate a cohesive singleness with a shared identity, empathy
and understanding of their experiences which could be exploited
within service provision to provide support networks and
communities for these patients.
While external support organisations, such as the Teenage
Cancer Trust and CLIC Sargent, are available to provide support for
these patients, in this study, these services were not signposted to
participants by staff providing treatment.
TYA cancer patients constitute a distinct group of patients with
a specific identity and needs that differ from older adult patients
379
which should be recognised and acknowledged by service
providers. This study recommends that key named workers, trained
in addressing these needs, are identified within radiotherapy
departments in order to ensure the long term physical and
psychological recovery of TYA cancer survivors.
Conflict of interest
There are no conflicts of interest associated with this work.
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