Article

I'll Show Them: The Social Construction of (In)Competence in Survivors of Childhood Brain Tumors

The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario, Canada M5G 1X8.
Journal of Pediatric Oncology Nursing (Impact Factor: 0.9). 03/2008; 25(3):164-74. DOI: 10.1177/1043454208315547
Source: PubMed
ABSTRACT
Multimodal therapy for the treatment of childhood cancer has resulted in increased survival rates, yet as growing cohorts of children mature, late effects are becoming apparent. Specifically, brain tumor survivors tend to have poor social skills, peer relationship problems, academic difficulties, and delayed college entry. This article addresses findings specific to the unique experience of childhood cancer survivors as they transition from adolescence to adulthood. Qualitative methods involving focus groups and in-depth interviews with 14 childhood cancer survivors and 22 family members were used. The dialectic of incompetence/competence pervaded all narratives. Contradictory concepts of integration/ isolation, realistic/unrealistic goals, and the need for special help/no help were underscored by respondents. The struggle to deal with these contradictory factors led to the simultaneous resistance and acceptance of feelings of competence.

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Available from: Katherine Boydell, Mar 11, 2015
Journal of Pediatric Oncology Nursing, Vol XX, No X (Month-Month), XXXX: pp xx-xx 1
I’ll Show Them: The Social
Construction of (In)Competence in
Survivors of Childhood Brain Tumors
Katherine M. Boydell, PhD
Elaine Stasiulis, MA
Mark Greenberg, MD
Corin Greenberg, PhD
Brenda Spiegler, PhD
© 2008 by Association of Pediatric Hematology/Oncology Nurses
DOI: 10.1177/1043454208315547
Multimodal therapy for the treatment of childhood
cancer has resulted in increased survival rates, yet as
growing cohorts of children mature, late effects are
becoming apparent. Specifically, brain tumor sur-
vivors tend to have poor social skills, peer relation-
ship problems, academic difficulties, and delayed
college entry. This article addresses findings specific
to the unique experience of childhood cancer sur-
vivors as they transition from adolescence to adult-
hood. Qualitative methods involving focus groups
and in-depth interviews with 14 childhood cancer
survivors and 22 family members were used. The
dialectic of incompetence/competence pervaded all
narratives. Contradictory concepts of integration/
isolation, realistic/unrealistic goals, and the need for
special help/no help were underscored by respon-
dents. The struggle to deal with these contradictory
factors led to the simultaneous resistance and accept-
ance of feelings of competence.
Key words: transition, childhood cancer survivors,
qualitative, emerging adults, brain tumor
A
lthough cancer remains the leading cause of
death from disease for children under the age of
20 in North America, its treatment within the pediatric
population is considered to be one of modern medicine’s
greatest successes (C. Eiser, 1998; Haase, Mauer, &
Reaman, 1998). Success has been achieved through
the use of multimodal and often aggressive treatments
(chemotherapy, radiotherapy, bone marrow transplan-
tation). More than 3 decades of effective multimodal
therapy for the treatment of childhood cancer has
resulted in current survival rates in excess of 75%
(SEER Cancer Statistics Review, 2006) and greater
than 90% for some types of cancer (E. Eiser, Hill, &
Vance, 2000; C. Schwartz, 1999). Yet as this growing
cohort of children matures, long-term late effects of
Katherine M. Boydell, PhD, is a senior scientist at The Hospital for Sick
Children and the Department of Psychiatry and Department of Public
Health Sciences, University of Toronto, Ontario, Canada. Elaine
Stasiulis, MA, is a research manager at The Hospital for Sick Children,
Toronto, Ontario, Canada. Mark Greenberg, MD, is a senior oncologist
at The Hospital for Sick Children and holds the POGO Chair in child-
hood cancer control at the University of Toronto, Ontario, Canada. Corin
Greenberg, PhD, is the executive director of the Pediatric Oncology
Group of Ontario, Toronto, Ontario, Canada. Brenda Spiegler, PhD, is
the director of psychology at The Hospital for Sick Children, Toronto,
Ontario, Canada. Address for correspondence: Katherine M. Boydell,
The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario,
Canada M5G 1X8; e-mail: katherine.boydell@sickkids.ca.
Page 1
Boydell et al
the disease and its treatment are becoming apparent.
In addition to the physical difficulties that survivors
of childhood cancer may encounter, which include
infertility, growth problems, and cardiac dysfunction,
survivors endure cognitive, emotional, and psycho-
logical late effects of the cancer experience.
These factors have considerable implications for
the quality of life of young survivors, encompassing
such issues as well-being, family life, education, stan-
dard of living, and community integration. Survival
alone is no longer considered a sufficient end point in
the treatment of childhood cancer (Hobbie et al.,
2000; Jenney, Kane, & Lurie, 1995; Mackie, Hill,
Kondryn, & McNally, 2000; Woodgate, 2006).
Consequently, over the past few decades, research has
begun to focus on studying the psychological sequelae
of childhood cancer and on adaptation to life after
cancer for survivors and their families (Boman &
Bodegard, 2004; C. Eiser, 1990).
Subgroups of childhood cancer survivors, such as
those who received cranial radiation, have been identi-
fied as having more serious adjustment and emotional
problems, resulting in poorer quality of life (E. Eiser
et al., 2000; Hill et al., 1998). These problems include
low self-esteem, depression, preoccupation with phys-
ical condition, and a negative body image. In addition,
in comparison to siblings and the general population,
they often have more difficulties finding employment,
acquiring health and life insurance, and obtaining
loans (de Boer, Verbeek, & van Dijk, 2006; Hill et al.,
1998; Pang et al., 2008). A tendency to avoid higher
education has also been reported (Boman & Bodegard,
2004). Specifically, studies conducted with brain
tumor survivors and others who have undergone cen-
tral nervous system treatment show that these individ-
uals tend to have poor social skills, problems with peer
relationships, academic difficulties (which include
issues with learning and concentrating), problems
obtaining special education placements, and a reduced
level of educational attainment and are less likely to
enter college and to leave the family home (Barrera,
Shaw, Speechley, Maunsell, & Pogany, 2005; Barr
et al., 1999; Carlson-Green, Morris, & Krawiecki,
1995; de Boer et al., 2006; Glover et al., 2003; Koch
et al., 2006; Koch, Kejs, Engholm, Johansen, &
Schmiegelow, 2004; Langeveld, Stam, Grootenhuis, &
Last, 2002; Mitby et al., 2003).
A less frequent focus of the extant research on
childhood cancer survivors has involved qualitative
studies that invoke the stories of cancer as lived and
told by young people and their families (Woodgate,
2005, 2006). In fact, prevailing constructions of men-
tal ineptitude and lack of agency have kept the voices
of young cancer survivors themselves on the periph-
ery of research and policy making. Many methods,
including questionnaires, interviews, and focus
groups, are designed in such a way that these young
people do not talk; only the representative voices of
caregivers and families are heard (Booth, 1996;
Coles, 2001). These experiential stories are critical as
they aid health practitioners in understanding the
worlds of patients and their families (Skott, 2001).
As part of a larger study that explored the experi-
ences and perspectives of survivors of childhood can-
cer and their family members in relation to an
academic/vocational program designed for them, this
article addresses findings specific to understanding
the unique experience of childhood cancer survivors
with cognitive impairments as they transition from
adolescence to adulthood.
Methods
Qualitative methods were used to study the transition
experiences and needs of emerging adult survivors of
childhood cancer and their families. Such methods
highlight the importance of understanding context and
the complexity of implementing social change. A social
construction perspective was used as it emphasizes the
importance of subjective interpretation in the actions
and reactions of individuals in their everyday lives
(Berger & Luckmann, 1966; Creswell, 1998, 2003).
Berger and Luckmann (1966) have identified everyday
subjective experience as the essence of reality.
Qualitative methods allow study participants to speak in
their own voice rather than conforming to categories
and terms imposed on them by researchers, and they
allow for an in-depth and richly textured understanding
of the phenomena under study. Such narrative accounts
counteract the tendencies of traditional quantitative
questionnaires to fracture experience and leave impor-
tant aspects unspoken (Graham, 1984). Currently, using
qualitative research methodologies in the study of chil-
dren’s cancer illness experiences is being encouraged.
The qualitative paradigm enables researchers to access
the complex and context-bound nature of children’s
experiences with cancer (Woodgate, 2000).
2 Journal of Pediatric Oncology Nursing XX(X); XXXX
Page 2
Data Collection
Focus groups were used because they have been
identified as the preferred method of choice when
interviewing children and other special populations
(Beyea & Nicoll, 2000; Lane, Dip, McKenna, Ryan, &
Fleming, 2001; Owen, 2001). The main purpose of
focus group research is to draw on respondents’ atti-
tudes, feelings, beliefs, experiences, and reactions.
They allow for multiple views and emotional processes
as well as a degree of consensus on any given topic
(Morgan & Kreuger, 1993). A key element of focus
groups is the emphasis on participant interaction, thus
highlighting participant points of view. The exchange
of experiences within a group context can lead to the
development of new ideas and perspectives. Three
focus groups were conducted, 2 with family members
(n = 9) and 1 with cancer survivors (n = 5).
In-depth interviewing, described by Charmaz
(1991b, p. 385) as “directional conversation that elic-
its inner views of respondents’ lives as they portray
their worlds, experiences and observations,” was used
for those participants who were not able or willing to
participate in a focus group. A total of 22 interviews
were conducted, 13 with family members and 9 with
cancer survivors. The guideline questions employed
in the interviews were modeled on those asked in the
focus group setting.
Participants
Participants included childhood cancer survivors
17 to 29 years of age, with significant neurocognitive
deficits (treated with whole-brain radiation for malig-
nant brain tumors) entering the transition phase
between adolescence and adulthood. Family mem-
bers of these youth were also included in the study.
Recruitment consisted of obtaining the names and
addresses of survivors of malignant brain tumors in
the appropriate age range from The Hospital for Sick
Children database. From a potential pool of 21 sur-
vivors and their families, 14 survivors and 22 family
members participated, comprising a total of 17 fami-
lies. All survivors were living with their family,
except for 1 in college residence and 1 living inde-
pendently. With the exception of 3 survivors who
were still attending school, all participants had grad-
uated from high school. Three survivors had either
completed or were in the midst of a postsecondary
program. Two survivors were working full-time.
Most participants were Caucasian, with 3 families
being of Chinese, East Indian, and Filipino descent,
respectively.
Analysis
Following participant consent, focus group and
individual interviews were audiotaped and tran-
scribed verbatim. A software program to assist in
qualitative analysis was not used. Transcribed narra-
tives were coded and analyzed for themes using
Diekelmann’s (1992) 7-stage approach to the analysis
of qualitative text. This involved a participatory team
approach that begins with reading and rereading
focus group and interview transcripts. Members of
the research team (K.M.B. and E.S.) then coded the
first few transcripts for the purpose of developing a
preliminary codebook, which continued to be refined
during the course of reading the remaining tran-
scripts. A meeting to discuss each interview in detail
and to review the codes followed. The codebook was
finalized and each transcript systematically coded.
Within the context of qualitative research, reliabil-
ity of the data and validity of research findings are
referred to as the extent to which findings are consid-
ered trustworthy (Creswell, 1998; Lincoln & Guba,
1985). To ensure trustworthiness, themes were
reviewed by 2 participants for validation of their
experience. Such member checks, or validation of
data among researchers and between researchers and
participants, contribute to the dependability and cred-
ibility of the analysis and subsequent theme develop-
ment. In addition to these member checks, peer
debriefing, prolonged engagement, and persistent
observation helped to ensure trustworthiness
(Erlandson, Harris, Skipper, & Allen, 1993).
Results
The dialectic of incompetence/competence per-
vaded all individual and group narratives of young
people and their family members. The contradictory
concepts of visibility/invisibility, integration/isolation,
realistic/unrealistic goals, and the need for special
help/no help were highlighted by respondents. The
struggle to deal with these contradictory views led to
the simultaneous resistance and acceptance of feelings
(In)Competence in Survivors of Childhood Brain Tumors
Journal of Pediatric Oncology Nursing XX(X); XXXX
3
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Boydell et al
of competence. Perceptions of incompetence resulted
from (1) the visible effects of cancer/treatment (small
stature, hair loss, scars), (2) the invisible effects of
cancer/treatment (cognitive disabilities, low motiva-
tion), and (3) the illness and treatment experience
(isolation, fear of reoccurrence), as constructed by
peers, family, educators, health professionals, and the
young people themselves.
Resistance from young people was reflected in
their determination to “show them.
I had the doctors tell me I would never graduate
high school . . . it made me feel like I was stupid.
. . . But when I went to high school I had that in
my head and as I graduated into each grade, I was
like, yeah, I’m showing you . . . but when I did
[graduate] I was actually proud of myself. Even
though they said I couldn’t, I was able to do it.
Consequently, the young people who participated
in our study portrayed themselves as worthy social
actors who were competent and capable—as they
actively struggled to resist the view of others.
However, simultaneously, they accepted an incompe-
tent self, plagued by their inability to concentrate and
retain knowledge or participate fully in certain activ-
ities with their peers.
Invisibility/Visibility
The perceived invisible and visible effects of the
cancer and its treatment underlay much of the sur-
vivors’ struggles with their notions of competency.
All survivors suffered from some invisible cognitive
effects such as short-term memory loss, problems
with spatial processing, and difficulties in reading,
writing, and mathematics. The degree and type of the
difficulty varied, affecting their academic experiences
in different ways.
Whereas mine, he has a good memory. It’s just
the reading and the writing and the math is not
there. (Parent)
For me, personally, concentrating and retaining
knowledge was and still is a huge factor for me.
I have a hard time retaining knowledge. That’s
probably the most difficult thing. My memory is
just shot. (Survivor)
The impact of the illness and treatment also
seemed to result in behavioral issues that emerged,
particularly among survivors who were already in
college or employed. Anger, depression, and a lack of
motivation were identified as being problematic and
very distressful.
He gets a depression . . . deep, deep depression
and it’s because he feels inadequate. (Parent)
Something that I have a hard time with this still
is motivation. I have a hard time motivating
myself . . . if I could, I knew that I could get
away with it, I think I would sleep all day. You
know watch television and not move. (Survivor,
who was juggling 2 different jobs, including his
own business)
Most of the survivors in this study also experi-
enced an array of visible effects. These effects not
only impeded their physical capabilities but also
exposed their cancer experience, evoking an assort-
ment of perceptions from others and themselves.
Some of the physical difficulties included problems
with gait and balance, which affected their ability to
get around and to participate in sporting events with
their peers. Many survivors also experienced hair loss
and because of their smaller physical stature tended
to appear years younger than they were. Some family
members felt that their child’s youthful appearance
may have been a factor in not getting job offers,
despite numerous interviews. For a number of sur-
vivors, their physical appearance meant that they
were a target of ridicule or perceived rejection from
others. Their physical appearance greatly affected
their self-image and self-confidence.
I have like a scar in the back of my head and
stuff like that and you know, I just learned to
forget about it, but others can’t seem to do the
same. (Survivor)
There’s a lot of self-image issues regarding the
. . . you know, because his hair didn’t grow back
after the radiation. He’s not a bad looking kid,
but he thinks he is. (Parent)
Survivors who felt that they looked more “normal”
conceded that fitting in was probably easier for them
than for their peers.
4 Journal of Pediatric Oncology Nursing XX(X); XXXX
Page 4
Finding friends wasn’t too hard because people
just took me like normal. (Survivor)
Yet appearing more “normal” meant that some sur-
vivors were not recognized as potentially needing
additional support and help with their academic
work. These survivors continued to silently fall short
of expectations set unwittingly high by their school
educators.
While the invisible effects were experienced in
varying degrees by all survivors, the added presence
or absence of visible effects further heightened sur-
vivors’ struggles with competence.
Integration/Isolation
When survivors were asked about the positive
aspects of their educational experience, they spoke
mainly about their friendships and social interactions.
One of the main motives identified in their desire to
continue their schooling was to get to know more peo-
ple. Yet for many cancer survivors, their social life was
limited. Some survivors indicated that they had been
regarded as different and were therefore shunned or
teased. A strong yearning to fit in and be normal
reflected the importance of their need for friends.
You know when it comes to extracurricular
activities, it is all about having a social life.
Social life is so important to him. (Sibling)
The kids were very good too, except for some of
the kids. They didn’t really understand what I
was capable of doing and stuff. They kind of
made fun of me. (Survivor)
That’s one of the most hurtful things when they
poke fun at somebody for something like that
[scar on head]. I’m quite concerned about that
sort of thing. (Parent)
Survivor participants spoke optimistically about
being able to fit in better at a college level because
people were more mature and therefore more accept-
ing of differences. Also, they believed that the fact
that there were more students meant that they would
not stand out as much.
Yeah, they [college students] are a lot more
mature. When you were in high school and you
were in public school. Yeah, you had those kids
who, you know, kind of mocked you and
bugged you a bit. It’s not like that anymore.
(Survivor in college program)
Also the fact that there is thousands of people,
not 400 people. So, it’s going to be less like,
“Oh, why is that kid wearing a hat?” It’s every-
one is wearing a hat or 9 out of 10 people or
whatever it is are wearing hats. It’s not like,
point at him because he’s different. Everyone’s
a little different. (Survivor)
The process of treatment, which often involved
long periods of time in the hospital or at home in iso-
lation because of the risk of infection during
chemotherapy, meant that survivors spent a lot of time
alone. Even when they had recovered, some young
people found it difficult to engage with others again.
Because I wasn’t allowed to go outside because
of the chemotherapy, I was getting lonely some-
times. (Survivor)
After radiation I did nothing for 5 years. I just
sort of sat and watched TV. (Survivor)
Feelings of not fitting in also contributed to loneli-
ness and isolation.
For a long time, these kids, like even myself
have felt isolated—that you don’t really fit in
with everyone else. . . . A lot of people I know,
after they come out of something like this, they
tend to stay by themselves. (Survivor)
They sort of stopped because I guess they had
seen M. as the leader all the time and now he
wasn’t. They sort of drifted away. (Parent)
Special Help/No Help
Despite the frustration and lack of support that
characterized survivors’ prior experiences in aca-
demic settings, thoughts of furthering education for
these young people were paramount to both survivors
and their family members. Although survivor partici-
pants revealed differences in the degree of difficulty
they experienced at school both academically and
socially, the challenges they faced were similar.
Throughout these narratives, the paradox of wanting
(In)Competence in Survivors of Childhood Brain Tumors
Journal of Pediatric Oncology Nursing XX(X); XXXX
5
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Boydell et al
special considerations within the classroom yet not
wanting to be different or singled out among their
peers was strongly evident.
The experience of school for all survivor partici-
pants was difficult. Periods of missing school and
dealing with cognitive difficulties and feelings of iso-
lation contributed to a range of problems and frustra-
tions among survivors. With little direction from
medical professionals and educators, most parents
initially enrolled their children back into the regular
school system. The stress of keeping up with their
classmates in an environment that did not understand
or was not equipped to handle their needs proved too
difficult for many young survivors. Some transferred
several times to other schools until they found a spe-
cialized school or program that could provide the
kind of support they needed. Other survivor partici-
pants remained in their regular schools but had extra
tutoring or an educational assistant to aid them in
their learning. One parent home schooled her child.
Grade 9 was like really, really terrible for me.
Because I went from, like, an elementary, like a
public school to a Catholic high school. It was
so terrible, I would be like at the back of the
class and then put like stuff on the board or
whatever and I would have no idea about what
to do. I would just hide from the teacher and
make sure she doesn’t go like . . . “Oh Susan, do
you know the answer to this?” After a while, I
couldn’t take it anymore and I wanted to drop
out. (Survivor)
I go to that school because I need that school
because in normal high schools, I can’t—like I
was lost. (Survivor)
I needed help, like one-on-one help, and they
wouldn’t provide it for me. So my mother
pulled me out and she home schooled me. So, I
graduated from home schooling. (Survivor)
The educators’ lack of understanding about the
participant’s experiences and needs as a cancer sur-
vivor was very frustrating for some survivors.
Expectations were often either too low or too high.
However, in retrospect, some of the survivors and
parents admitted that they had not fully informed the
schools about the illness experience and possible
need for extra help.
They think that we need like special care. We don’t.
We just need a little bit of extra time or explaining.
They think that you have to go to a special school
if you have special needs. (Survivor)
If a person doesn’t know Robert, he will see that
17-year-old, that person will compare him and
they won’t be sympathetic. But all the teachers
know about his condition, so they are very sym-
pathetic to him. (Parent)
The teacher also thinks that because you are a
good student, you don’t need extra time. Some
people always get good grades but need time to
get those grades and teachers don’t like it.
(Survivor)
I was just treated like everyone else. That was a
good thing I think because that way it wasn’t
singling me out and I wasn’t getting any special
treatment and I wasn’t made to look any differ-
ent than anyone else. But at the same time, I
think I probably could have used a lot, a lot
more help than I had. (Survivor)
In addition to needing extra time to complete
assignments or exams as well as more one-on-one
help, survivor participants spoke about their need for
encouragement. Recognizing the pressure survivors
often put on themselves to succeed at school and at
work, parents also stressed the importance of encour-
aging rather than pressuring these young people.
I think I could have used more of that (encour-
agement). Like I would get assignments done
and hand them in, but that was it. I didn’t get a
good job or anything. (Survivor)
Well stress gets me a lot. Like when you know
you’re doing bad in a class, just trying to pass
that class. (Survivor)
Realistic/Unrealistic
All young people in the study revealed that they
were positive about the prospect of academic
advancement. They appeared aware of the challenges
involved and what they would require to facilitate this
important transition. Past accomplishments contributed
to a sense of self-esteem and confidence, better
preparing these young people for further education.
6 Journal of Pediatric Oncology Nursing XX(X); XXXX
Page 6
Even though they said I couldn’t, I was able to
do it. Now, I feel I can graduate from college or
something bigger. Because I was always afraid
you know, that I was always going to fail what-
ever I tried to do . . . so, I have the confidence
that, yeah I can go to school, to college and I
can graduate. (Survivor)
The described advantages of being in school were
2-fold, that is, the social and academic aspects. Yet some
of the survivors also expressed uncertainty and fear
about their ability to succeed socially and academically.
I’m really open-minded to everything. I think if
I went back to school it would be very good for
me. I would make more friends than I used to
have in the past and also learn a lot. (Survivor)
Well, I’m looking forward but right now, it’s the
transition. . . . I’m scared. I don’t know how it’s
going to work out. (Survivor)
Participants
constructed a positive alternative dis-
course. Despite reports of experiencing difficulties
with self-motivation, a pervasive theme throughout
the narratives was the high level of determination
among cancer survivors. In the face of the low expec-
tations that these young participants perceived from
some medical professionals and educators, arose a
strong will to “show them” and prove them wrong.
We were given the worst scenario—dying, crip-
pled—then these children proved them other-
wise. (Grandmother)
I remember my parents going to a Brain Child
meeting and coming home, so, so upset because
they were talking about how a lot of survivors
who had specific types of cancer that he [brother]
did, couldn’t finish high school and that they had
been affected cognitively so that they couldn’t
actually go to college. He got so frustrated. I
remember him getting so upset. He kept saying,
I’m not going to be one of those. I want to be one
of the statistics on the other end that talk about
me—look it can be done. (Sibling of survivor
who has completed a 3-year college program)
If he gets in his mind, he works and works and
works until he gets it. When he puts his mind
that he wants it, there’s no point in deterring and
talking him out of it. (Parent)
Achievements and successes propelled survivors
into feeling more confident and determined to reach
their next objective. Almost all the survivors had spe-
cific career goals and plans on how to achieve them
including becoming a chef, horticulturalist, engineer,
mechanic, broadcaster, industrial designer, and teacher.
I’ve gotten a job. I’m actually on cash right now
and I didn’t think I would be doing as well as I
could. So now I have the confidence that, yeah I
can go to school, to college and I can graduate.
(Survivor)
In other ways I think I can [go to college]
because of all that I accomplished in elementary
school and high school. (Survivor)
Some parents, however, feared that their children’s
dreams were unrealistic. They worried that such
expectations would lead to further disappointments
and discouragement, which sometimes occurred
among some of the survivors. Aiming high also cre-
ated a lot of pressure and stress for survivors. Without
direction and support, parents felt ill equipped about
how to advise their children.
He has a dream of becoming a police officer. He
has a dream of going there but I know it is not
possible. I’m thinking if I tell him that you can’t
be—maybe he will stop going to school or
something. (Parent)
We can’t pull the rug out from under his feet and
say, “You know what? This isn’t a realistic dream
for you,” which is really hard. Somebody else
can tell him, but it’s not good for us to tell him.
(Parent)
He was afraid to tell us [that he failed] . . .
because he was such a perfectionist, and then he
failed. . . . It was devastating. (Parent)
Cancer survivors and their family members
painted a temporal picture that moved from minimal
expectations on the part of medical service providers
and teachers, to the frustration and challenges of
daily life at home and in school, to considerable skills
and achievements. Their stories revealed a group of
young people who amidst struggles with rejection,
fear, and feelings of inadequacy emerged extremely
determined, motivated, and dedicated with clear aspi-
rations for the future.
(In)Competence in Survivors of Childhood Brain Tumors
Journal of Pediatric Oncology Nursing XX(X); XXXX
7
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Boydell et al
Discussion
The use of focus groups and individual interviews
with young cancer survivors and their families
allowed respondents an outlet to express their stories
vis-à-vis the transition to postsecondary education or
employment. As Frank (2005, p. 972) noted, “per-
sonal stories are not to be understood as strictly indi-
vidual. Any person’s story is the site of struggles
permeated by multiple voices.” Consequently, the
personal story generates a sense of the social world
experienced by the individuals who express those
stories (Holstein & Gubrium, 2000).
The variation in how young people who have sur-
vived childhood cancer are viewed by others and the
ways in which childhood cancer survivors view them-
selves, in sociological terms, fits into the theoretical
framework of social construction. That is, individuals
have the ability to construct meaning from their own
perspective. Each group defines a different problem;
they ask different questions, each drawing on their
own framework of meaning to define issues and con-
cerns. This idea, identified by Berger and Luckmann’s
(1966) The Social Construction of Reality, argues that
people construct a personal view of their social world,
which eventually becomes objective and is seen as a
normal perspective on reality. Concepts within this
framework are not necessarily universal, but they can
be influenced by history and related to the society in
which they emerge (Lupton, 1994; Scambler, 2003).
The link between the bodily experience of illness
and self-identity and its relation to the social world
has been examined extensively in the literature
(Charmaz, 1983, 1991a; Corbin, 2003; Morse, 1997)
and, more recently, in the childhood cancer literature
(Woodgate, 2005; Woodgate & McClement, 1997).
According to Charmaz (1983), the experience of
chronic illness creates a heightened awareness and
sensitivity among ill individuals to the actions of oth-
ers in ways that are critical and self-discrediting. For
adolescents with cancer, the meanings they ascribe to
their experiences are rooted in their own perceptions
of the illness as well as their perceptions of how oth-
ers respond to them (Woodgate, 2005). Contrary to the
clinical definitions of cancer as a chronic illness, they
define cancer from their personal and social perspec-
tives and not as a chronic illness (Rechner, 1990).
Much of the extant bioethics medical literature
appears to proceed on the assumption that patients are
inherently competent or incompetent. This assump-
tion is sometimes made explicit and addresses the
issue of competency as a stable individual attribute, a
characteristic in itself with an inherent permanence
(Secker, 1999). Seldom acknowledged or discussed is
the extent to which competence or incompetence may
be largely socially constructed. That is, the notion of
competence/incompetence does not refer to basic
medical, legal, biological, or psychological concepts
that can be used to assist in the identification of some
objectively determinable, fixed property of patients.
Competence or incompetence is not simply a funda-
mental feature of patients but rather is determined in
part by social factors. The notion of competence is
produced in society, based on dominant moral and
sociopolitical values, beliefs, and goals. Society also
has the power to provide or withhold particular
means and opportunities that may be essential to
meeting the standards of competence it sets. Thus, the
main reason for the finding of incompetence may be
social, political, economic, institutional, or situa-
tional rather than individual cognitive or psychologi-
cal. To the extent that a patient’s competence can be
enhanced or undermined by social arrangements,
competence or incompetence is socially constructed.
No longer formal patients, the cancer survivors in
this study struggled with notions of competence in
their social and academic/work realms. For many,
competence was reflected in their desire to be normal
and to be treated as such by their family and friends.
This seeking to return to a normal way of life has
emerged frequently in the literature examining the
experiences of childhood cancer survivors (Grant
et al., 2006; Rechner, 1990; Woodgate, 1999, 2000,
2006). In her longitudinal study on adolescents’ expe-
riences with cancer, Woodgate (2005) found that the
response of others was equally important to adoles-
cents’ sense of self as their own perceptions of their
changing bodies. Being accepted and treated the
same as they were prior to their cancer experience
was vital to these young survivors. Yet for the partic-
ipants in the current study who appeared different
because of the visible effects of the cancer and its
treatment, fitting in and interacting socially was diffi-
cult. Their resistance to this constructed notion of
social incompetence is evident in their hope to be
more accepted and socially active within the diversity
of a college setting. Blending in and moving beyond
the barriers imposed by others’ perceptions meant
8 Journal of Pediatric Oncology Nursing XX(X); XXXX
Page 8
that survivors were free to be socially adept and
competent.
The struggle for normality also emerged in sur-
vivors’ efforts regarding the academic challenges of
school. Despite their desire to perform well and the
recognition that they needed extra help, many sur-
vivors resisted seeking additional support. As a result,
high school was frequently a frustrating and disap-
pointing experience. The tension of maintaining a
sense of academic competency in the face of acknowl-
edged cognitive deficits is illustrated in survivors’
articulated desire to be treated the same as everyone
else but with some special consideration. While the
quest for normalcy in some instances contributed to
poor academic performances, for many participants,
resisting notions of incompetence fueled a drive to suc-
ceed and to “show them,” referring to the health pro-
fessionals, educators, and others who tended to paint a
dismal view of survivors’ future. Similarly, in
Glasson’s study (cited in Woodgate, 1999) study on
adolescents’ experience of going back to school, an
increase in self-motivation to catch up on school work
was borne out of survivors’ yearning to be normal.
Expectations on the part of others, most notably
from parents, clearly have a significant impact on sur-
vivors’ perception of themselves and their struggles
with competence. Consistent with other research,
which indicates that adolescent perceptions of self-
esteem are associated positively with higher parental
expectations for their future, parents in the current
study also recognized the importance of being encour-
aging and optimistic (Woodgate, 1999). Yet the caution
they articulated in not setting up unrealistic or false
expectations is worthy of consideration. In examining
discrepancies between what childhood cancer sur-
vivors would like to achieve in life and what they can
actually do, C. Eiser, Greco, Yance, Horne, and Glaser
(2004) found that greater discrepancies were associ-
ated with lower levels of self-reported quality of life.
C. Eiser et al. countered that the data do not imply that
survivors should lower their expectations but rather
that more attention and creativity should be directed at
identifying and building on their strengths.
Intertwined with notions of competency and social
construction is the concept of agency. According to
S. Schwartz, Cote, and Arnett (2005, p. 207), agency can
refer to “a sense of responsibility for one’s life course,
the belief that one is in control of one’s decisions and
is responsible for their outcomes, and the confidence
that one will be able to overcome obstacles that
impede one’s progress along one’s chosen life
course.” Based on empirical data with university stu-
dents, Cote, as reported by S. Schwartz et al. (2005),
found that measures of agency were the most signifi-
cant predictors of postuniversity success (eg, job sat-
isfaction, progress in personal development).
In this study, the young people’s strive toward com-
petency demonstrates their attempts to exercise their
agency and build a positive self-image. Despite the
challenges they faced, the survivor participants did not
see themselves as powerless. Rather, they sought to
prevail against the constructing forces of victimization
by determining to “show them” what they could do
and achieve. The importance of individual agency in
the construction of a positive self-identity has been
identified in studies focused on other marginalized
groups such as people who are homeless (Cohen &
Wagner, 1992; Wright, 1997). This understanding
invites health professionals to provide opportunities in
which young cancer survivors are supported in setting
and pursuing goals that will foster self-confidence and
empowerment.
This study highlights the tendency of pediatric
oncology professionals, educators, and parents to
define the needs of these young people and position
them as vulnerable individuals unable to represent
themselves and as the
socially deficient other in need
of expert intervention. Crinall (1995) questioned at
what point professional practices reinforce and con-
tribute to exploitative systems of power,
constructing
processes of victimization. This is an important con-
sideration to reflect upon, as service provision is often
embedded in hierarchical organizational contexts.
It remains important to question how social issues
are constructed and how these constructions influ-
ence solutions offered and to acknowledge the contri-
butions that service users’ perspectives, particularly
those of young people, can make to the development
of practice and policy principles. Hence, the stories of
young cancer survivors and their families must be
consistently attended to. As this and other research
has shown, childhood cancer survivors continue to
carry the physical and emotional scars of their illness
and treatment well into their years of emerging adult-
hood (Grant et al., 2006; Woodgate, 2006). Strategies
to support these young people in ways that will culti-
vate and harness their strengths and determination
need to be anticipated and developed.
(In)Competence in Survivors of Childhood Brain Tumors
Journal of Pediatric Oncology Nursing XX(X); XXXX
9
Page 9
Boydell et al
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(In)Competence in Survivors of Childhood Brain Tumors
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    • "School-related challenges were ongoing and dynamic considering there were critical points of transition experienced by survivors and their families (Bruce et al., 2012). Parents had to spend extra time helping their children with their homework (Norberg and Steneby, 2009), with some deciding to home school their child due to their child being bullied or treated as social outcasts (Boydell et al., 2008; Vance et al., 2004; Bruce et al., 2008). Parents sometimes went to the length of advocating for their child in an unfamiliar school system (Vance et al., 2004; Bruce et al., 2008). "
    [Show abstract] [Hide abstract] ABSTRACT: The multiple late-effects experienced by survivors of childhood brain tumors, are not only a source of great distress for survivors, but also for their parents and siblings. The aim of this review is to systematically identify and synthesize qualitative evidence on how survivors of childhood brain tumors and their parents experience life after surviving childhood brain tumors. Based on literature search in seven databases, 10 qualitative studies, published between 2004 and 2014 were included. Surviving a childhood brain tumor was experienced as paradox for survivors and their parents. While parents and survivors celebrated making it through the cancer experience, they nonetheless encountered a world with loss and new challenges. In short, the experience of survival was a bittersweet experience for survivors and their parents. Survivors and their parents experienced change that included living with uncertainty, intensification of the parenting role, a changing social world, a different way of being, and the need for additional help. Results from this synthesis reinforce that surviving a childhood brain tumor should be viewed as a point on a continuum of living with a brain tumor. Psychosocial effects of surviving brain cancer affect the entire family unit. A need for psychosocial support is evident, although development of such supports necessitates a more full understanding of challenges face by the child affected, their parents, and siblings. The limitations noted in this synthesis reinforce that more qualitative research is needed in this subject area. Copyright © 2015 Elsevier Ltd. All rights reserved.
    No preview · Article · Jul 2015 · European journal of oncology nursing: the official journal of European Oncology Nursing Society
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    • "Therefore, we could not interview survivors of other types of cancers such as the common hematological cancer, leukemia. The sample of the qualitative study purposively excluded survivors of brain tumors, who are particularly at risk of poor social outcomes, because of the specific and unique challenges they experience (Boydell et al., 2008). Furthermore, participants were treated during a period when medical treatment was different from that of today, and mortality was higher. "
    Full-text · Article · May 2015 · Revue d Épidémiologie et de Santé Publique
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    • "Therefore, we could not interview survivors of other types of cancers such as the common hematological cancer, leukemia. The sample of the qualitative study purposively excluded survivors of brain tumors, who are particularly at risk of poor social outcomes, because of the specific and unique challenges they experience (Boydell et al., 2008). Furthermore, participants were treated during a period when medical treatment was different from that of today, and mortality was higher. "
    [Show abstract] [Hide abstract] ABSTRACT: With the increase in survival from childhood cancer, research has increasingly focused on the educational and professional achievements of childhood cancer survivors. Yet, if large-scale studies provide an acute description of the current situation of childhood cancer survivors, little is known about their trajectories and the social processes shaping these trajectories. Using a qualitative methodology, drawing from a life course perspective, this study sought to describe the role of childhood cancer and its side effects in educational trajectories, as perceived by the participants. We investigated related processes of social adjustment to cancer, that is to say, choices or decisions that survivors related to the illness in the making of their career plans. Eighty long-term French childhood cancer survivors participating in the Euro2K longitudinal study were interviewed through in-depth, face-to-face interviews undertaken in 2011-2012.There were various types of impact described by respondents of the diagnosis of cancer on their trajectories. These varied according to gender. In women, childhood cancer tended to result in poor educational achievement, or in steering the individual towards a health care or child care occupation. This was justified by a desire to return the support that had been offered to them as patients. In men, however, childhood cancer led to a shift in career plans, because of physical sequelae, or because of concerns about their future health. Paradoxically, this limitation had a positive impact in their occupational achievement, as most of these men disregarded blue-collar jobs and chose more qualified white-collar occupations. Overall, findings suggest that childhood cancer influenced educational trajectories and, thus, socioeconomic status in adulthood, through mechanisms embedded in gender norms. These mechanisms could explain gender inequalities in educational achievement after childhood cancer reported in large-scale cohort studies.
    Full-text · Article · Apr 2015 · Social Science & Medicine
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