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Journal of Pediatric Oncology
http://jpo.sagepub.com/content/23/3/122
The online version of this article can be found at:
DOI: 10.1177/1043454206287396
2006 23: 122Journal of Pediatric Oncology Nursing
Roberta Lynn Woodgate
The Importance of Being There: Perspectives of Social Support by Adolescents with Cancer
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122 Journal of Pediatric Oncology Nursing, Vol 23, No 3 (May-June), 2006: pp 122-134
DOCTYPE = ARTICLE
The Importance of Being There: Perspectives
of Social Support by Adolescents With Cancer
Roberta Lynn Woodgate, PhD, RN
© 2006 by Association of Pediatric Oncology Nurses
DOI: 10.1177/1043454206287396
Adolescents with cancer are confronted with many
challenges. The extent to which they are able to deal
with such challenges appears to be partly contingent on
a positive strong social support system. In this article,
the author describes findings specific to the sources of
social support that 15 adolescents with cancer found to
be most important in getting them through the cancer
experience. Data were collected as part of a longitudinal
qualitative interpretive study and involved individual
interviews, focus group interviews, and participant
observation as the main sources of data. The relationships
that adolescents maintained with their nuclear
families, health care team members, and special friends
were the 3 main supportive relationships in the adolescents’lives.
The act of others “being there” was seen by
the adolescents as the key element of a supportive relationship
and involved 6 main behaviors. Although the
3 key supportive relationships were essential in helping
adolescents get through cancer, these relationships
were at times a source of stress for adolescents.
Key words: adolescents, cancer, supportive relationships,
family
The valuable effects of social support on individual
physical and psychological well-being have been
well recognized within the cancer literature for years.
Wortman (1984), in her seminal paper on social
support and the adult cancer patient, noted that despite
weaknesses in individual studies, the literature is
nonetheless consistent in indicating that social support
may constitute a significant resource in coping with
cancer. The significance of strong social support
systems in children with cancer and their families is
also appreciated (Ell, 1996; Katz & Varni, 1993;
Neville, 1998; Quittner, 1992) and is assumed to affect
their quality of life (Hinds, 1990). For adolescents with
cancer, a strong social support system is especially
important in helping them cope, considering they have
the potential to experience a “dual crisis” in having to
deal with complex normative developmental tasks as
well as cancer-related stressors (Kyngäs et al., 2001;
Zevon, Tebbi, & Stern, 1987).
Part of a larger study that sought to describe how
childhood cancer and its symptom course were
interpreted and experienced by children (4-18 years
of age) and their families (Woodgate, 2001), the aim
of this article is to detail one of the study’s main
categories, the degree and type of social support
from the perspectives of adolescent participants
with cancer.
Roberta Lynn Woodgate, PhD, RN, is an assistant professor in the Faculty
of Nursing at the University of Manitoba, Winnipeg, Canada. She has a
cross-appointment in the Faculty of Medicine in the Department of
Pediatrics and Child Health, University of Manitoba, and a Scientist
appointment with the Manitoba Institute of Child Health. She is the recipient
of a Canadian Cancer Society Research Scientist Award (2004-2010).
Address for correspondence: Roberta Lynn Woodgate, PhD, RN, Assistant
Professor, Child Health and Illness, Faculty of Nursing, Helen Glass
Centre for Nursing, University of Manitoba, R3T 2N2, Winnipeg,
Manitoba, Canada; e-mail: Roberta_Woodgate@umanitoba.ca.
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The Importance of Being There
Journal of Pediatric Oncology Nursing 23(3); 2006 123
Review of the Literature
The Construct of Social Support
Complicating our understanding of the social
support experience in childhood cancer is that social
support is a complex phenomenon whose actual meaning
has not been clarified (Hupcey, 1998). For example,
Caplan defined support as continuing social aggregates
that provide individuals with opportunities for feedback
about themselves and for validations of their expectations
of others (in Wolchik, Beals, & Sandler, 1989).
Cobb defined social support as information leading the
individual to believe that he or she is cared for and
loved and that he or she belongs to a network of communication
and mutual obligation (in Sandler, Miller,
Short, & Wolchik, 1989). Belle (1989) defined social
support as resources that are provided by people within
the context of interpersonal relationships. Although
these definitions vary, they all underline the importance
of supportive interpersonal relationships or networks.
In recognition of the complexity of the phenomenon
of social support, Vaux (1990) suggests that social support
be defined as a metaconstruct with the following
dimensions: (1) support network resources or the set of
relationships through which an individual receives
help in dealing with demands and achieving goals,
(2) supportive behaviors or the specific acts intending
to help someone, and (3) subjective appraisals of these
network resources and behaviors. Presently, what is
known about each of these dimensions in the context
of childhood cancer is in its infancy. This lack of
understanding could be attributed to problems in securing
adequate research tools that assess, in an appropriate
and comprehensive manner, more than one dimension
of social support (Woodgate, 1999).
Social Support in the Adolescent
Cancer Experience
To date, asking adolescents with cancer to identify
their support resources or sources has been the primary
focus. Consistently, research reinforces that family
members, especially mothers, are identified as the
major source of support (Enskär, Carlsson, Golsäter, &
Hamrin, 1997; Fowler-Kerry, 1990; Haluska, Jessee, &
Nagy, 2002; Kazak, Christakis, Alderfer, & Coiro,
1994; Nichols, 1995; Rechner, 1990; Ritchie, 2001;
Stern, Norman, & Zevon, 1993; Weekes, Kagan,
James, & Seboni, 1993). Subjective appraisal of the
support resources is another research area. One study
that compared the perceived sources of social support
on adolescents with cancer to age-matched healthy
adolescents found that both groups reported similar
support sources and satisfaction levels, but adolescents
with cancer perceived parental relationships as more
supportive (Haluska et al., 2002). Supportive behaviors
that adolescents have found to be helpful in getting them
through cancer have also been studied. Behaviors that
adolescents frequently report include having family and
friends stay with them during their clinic appointments
and hospital stays, not being treated differently because
of their cancer, and having their hands held during
painful procedures (Ritchie, 2001; Weekes et al., 1993;
Weekes & Kagan, 1994).Adolescents clearly valued the
support that they received from family and friends.
Although there is an increasing knowledge base
about the type of supports that adolescents with
cancer find to be helpful, there is still much to be
learned from them, including understanding what it is
about social support that adolescents with cancer view
to be important. Because social support is seen to be
an act of interpretation between support givers and
support receivers, qualitative research is deemed valuable
to the study of social support (Jacobson, 1990).
Methods
Design
A longitudinal qualitative research design guided
by the philosophy of interpretive interactionism was
conducted between July 1998 and December 2000 to
address the phenomenon under investigation. This
approach helped to (1) arrive at meaningful interpretations
of the adolescents’ perspectives, (2) support the
view that adolescents are competent reporters of their
own experiences, (3) put adolescents’ views at the
center of analysis, and (4) ensure that the research
worked for the adolescents rather than on them
(Denzin, 1984; Mayall, 1996).
Setting and Participants
The study took place in an inpatient and outpatient
pediatric cancer unit located in a city in western Canada.
Permission to carry out the study was first secured from
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124 Journal of Pediatric Oncology Nursing 23(3); 2006
the Research Ethics Board of the University of
Manitoba. Purposive sampling was used to optimize
describing the full range of the phenomenon and variation
in the data, including type of participants (Morse &
Field, 1995). Families of children of varying ages
(4-18 years of age) with different cancer diagnoses were
invited to participate in the study. In total, 39 families
agreed to participate. Both parental consent and child
assent were obtained from the families.
Of the 39 families participating in the study, 15 had
an adolescent between 12 and 18 years of age. The
mean age of the adolescents was 14 years. Eight of
the adolescents were male, and 7 were female. The
majority of the adolescents were diagnosed with
either leukemia or lymphoma (n = 12), and the other
3 were diagnosed with a solid tumor. All received
chemotherapy. Four of the adolescents had undergone
radiation, 6 had surgery, and 1 adolescent had a bone
marrow transplant. Two had a history of relapse, and
all were in remission at the end of the study. Twelve
of the adolescents had 2 parents, and 14 had at least
1 sibling. Despite attempts to sample adolescents
from diverse cultures, all but 1 was white.
Data Collection
Multiple data collection methods were used to
arrive at a detailed description of the adolescents’
experiences. This included all of the adolescents participating
in open-ended interviews. The open-ended
interview method helped to engage the adolescents in
eliciting detailed responses deemed significant to the
study’s purpose and also afforded the opportunity for
adolescents to focus their responses into areas previously
not anticipated (Morse & Field, 1995). An
interview guide grounded in the pediatric psychosocial
oncology literature was developed to address the
overall purpose of the study and included questions
specific to eliciting adolescents’ perspectives about
their support experiences (eg, adolescents were asked
to talk about those things they found to be helpful and
not helpful to them in dealing with their cancer). The
interviews varied in time between 35 and 120 minutes,
depending on how the adolescents were feeling
and/or how interested they were in being interviewed
at that particular time. Follow-up questions to help
adolescents develop their answers were then asked
and varied depending on their initial responses. Field
notes were made during the interviews. All interviews
were tape-recorded to preserve their authenticity. The
majority of adolescents participated in 3 to 5 interviews.
The first interview for each adolescent took
place soon after the adolescent agreed to be in the
study, with follow-up interviews occurring at various
points in the adolescents’ cancer trajectory. Followup
interviews helped to clarify or build on issues
identified by adolescents in the first interviews.
The data collection method of moderate participant
observation was also used to appreciate the adolescents’
meanings of actions and events. Adolescents
were observed in the inpatient and outpatient units
during various periods and at different points in time.
Moderate participant observation supported a fairly
nondisruptive presence by means of balancing participation
with observation (Prus, 1996; van Manen, 1990).
Observations were recorded in the form of unstructured
field notes. Informal interviewing took place during
periods of observation. Questions flowed from the
immediate context and helped to verify what meanings
the adolescents had assigned to their situations.
Two focus group interviews were scheduled near
the end of the study to help validate emerging themes.
One of the groups involved 4 male adolescents, and
the other involved 5 female adolescents. Each focus
group interview lasted approximately 2 hours and
was audiotaped.
Data Analysis
Data analysis was ongoing and occurred concurrently
with data collection.All interviews and filed notes
were fully transcribed using the Microsoft Word wordprocessing
program. Data were analyzed by the constant
comparative method of data analysis (Morse & Field,
1995; Strauss & Corbin, 1990). Key steps involved
coding or giving meaning to all units of information,
revising codes and/or recoding previously coded data,
and aggregating and clustering codes into theoretical
categories.Asking questions and making memos related
to code notes and data comparisons was part of the
process of coding. Critical to the coding process was
making comparisons within and between data sets.
Operational definitions were written for all categories
and subcategories. A second type of interpretive work,
the development of illness narratives, provided a basis
for understanding how cancer affected the adolescents
by arranging cancer events in temporal order and
relating them to other events in the participants’ lives
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The Importance of Being There
Journal of Pediatric Oncology Nursing 23(3); 2006 125
(Hydén, 1997; Viney & Bousfield, 1991). Narrative
analysis helped confirm the emerging categories.
Results
This study resulted in the development of a substantives
theory entitled “Keeping the Spirit Alive.” This
theory depicts how families of children with cancer
used the core process of keeping their spirits alive in
response to them having to experience the central
problem or core phenomenon of getting through all the
rough spots of the cancer experience. A detailed
description of these 2 core variables and the overall
theory is provided elsewhere (Woodgate & Degner,
2003). Affecting the adolescents’ response of getting
through the cancer experience was the intervening
condition or category identified as the type and degree
of social support present in the adolescents’ lives. The
degree and type of social support was represented by
the following 3 subcategories: (1) supportive relationships,
(2) being there, and (3) consequences of being
there. The next sections describe in detail each subcategory
and attributes of the subcategories (see Table 1).
Supportive Relationships
The first subcategory, supportive relationships,
referred to the relationships formed between the adolescents
and individuals whom the adolescents found to
be supportive. The importance of supportive relationships
to adolescents during the cancer experience was
stressed by all adolescents in the study. One 16-year-old
female adolescent expressed,
Because of family and friends and support. . . . If
I did not have anybody, I would be in the garbage.
The way I reason, the way I see it, is the only
reason I have come this far is because of them.
Essential to defining a relationship as being supportive
were those relationships that helped adolescents
maintain a sense of being in the world and made
them feel connected as well as loved and cared for.
Adolescents identified 3 key supportive relationships:
(1) support from my health care team, (2) support from
my special friend, and (3) support from my family.
Support from my health care team. “Support from my
health care team” refers to the supportive relationship
that adolescents maintained with professional members
(eg, nurses, physicians, therapists) and nonprofessional
members of the health care team (eg, nurses’ aides).
The support from the health care team was so important
to adolescents that some of them referred to the
health care team as their “second family.” The adolescents
had much love and high esteem for the health
care team, as this 16-year-old adolescent reinforced:
Like those nurses are like really great. And
Betty [nurse clinician], if it was not for her I
could not do this. She helps quite a bit. Instead
of being upset and sad, she looks at everything
good, you know? And she shows it to me. . . .
She is really great.
Although all adolescents valued the support that they
received from the health care team as whole, most of
the adolescents had identified one particular team member
whom they found to be especially helpful in getting
them through the cancer experience. Each adolescent
gave different reasons for becoming closer to one
member of the team than other team members
(eg, having a good sense of humor).
Support from my special friend. “Support from my
special friend” refers to that one really special friend
who stood by the adolescent throughout his or her
cancer experience. For about a quarter of the adolescents,
the special friend was one of their peers whom
Table 1. List of Category, Subcategories, and Attributes of
the Subcategories
Category: Degree and type of social support
Subcategory 1: Supportive relationships
Support from my health care team
Support from my “special friend”
Support from my family
Subcategory 2: Being there
Being there to comfort me
Being there to hold my hand
Being there to keep me from feeling lonely
Being there to help me feel like I have a life
Being there to keep me positive
Being there for me despite everything
Subcategory 3: Consequences of “being there”
Consequences associated with the health care team
Consequences associated with “special friends”
Consequences associated with the family
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Woodgate
126 Journal of Pediatric Oncology Nursing 23(3); 2006
they had befriended in the cancer clinic. However, for
most of the adolescents, it was their best friend whom
they knew prior to the cancer experience. Adolescents
really valued those friends who remained their friends
and who treated them in the same way as they did prior
to the cancer diagnosis. Having that one “special”
friend was more important to the adolescents than having
many friends who were not as close or supportive
as that one “special” friend. One adolescent expressed,
I guess it also made me realize, like Kristie
[friend] always came and sat with me when
I needed her to be there. Some people always
sometimes dropped in and said “hi” or phoned
me to ask me how I was doing and there were
some people who just never talked to me after
I got cancer. That could be because they were
really uncomfortable or that they really did not
care enough! Quality over quantity!
Support from my family. “Support from my family”
refers to the supportive relationship that adolescents
maintained with their core family unit (parents
and siblings). Although the supportive relationships
with health care team members and their friends were
key relationships in the lives of adolescents, it was the
relationship that adolescents maintained with their
families that was identified by adolescents as the
most important supportive relationship experienced
throughout the cancer course. Knowing that their
families would always be there for them was what
mattered most to the adolescents. The support that
adolescents received from their families gave them
the strength to continue, as made evident by the
following comment:
I will keep on fighting. I am my mom and dad
combined. Dad and Mom are my total role models
because they have been through so much in
their lives but they are still as strong and probably
stronger then anyone else! If I was to die
I could see it would hurt them.
Being There
The second subcategory of social support is the
phenomenon of “being there.” Relationships that succeeded
to help make adolescents feel connected and
a part of the world were those relationships in which
the individual in the relationship was seen by the
adolescent as “being there” for him or her. When talking
about individuals in their supportive relationships, it
was not uncommon for adolescents to refer to the
phrase “they were there for me.” It was through the
act of “being there” that adolescents experienced a
sense of presence with the individual in the relationship
and made the adolescents realize what really was
important in life.
I think you realize how important family is to
you. Like I guess before it was like the sisters
I was stuck with having, but now I realize they
are really important to me and you know when
I need them they are there for me and when I am
going for something, they will always be there.
Knowing that others were there for them was what
really counted to the adolescents. Overall, the phenomenon
of “being there” made adolescents feel that
they were not alone in having to get through the cancer
experience. One 15½-year-old female adolescent
related,
When I was in the hospital one night with the
total body radiation and I was sick before that
and so it was hard for me to get through it
because you have to be sitting in this room all
by yourself for like 20 minutes. I was scared.
And so what my mom did was to use the intercom
and she read to me over the intercom. Boy,
did that make a big difference!
Adolescents identified many ways that others
could be there for them, but there were 6 ways of
“being there” that were identified as being most
important to the adolescents. The 6 ways were as follows:
(1) being there to comfort me, (2) being there to
hold my hand, (3) being there to keep me from feeling
less lonely, (4) being there to help me feel like
I have a life, (5) being there to keep me positive, and
(6) being there for me despite everything.
Being there to comfort me. The first way of being
there involved the act of being there to comfort the
adolescents when they were not feeling well. It
involved others having a physical presence around
the adolescents and carrying out some type of act that
helped adolescents feel better physically and/or mentally.
Quite often, it involved either a family member
or health care team member carrying out some type
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The Importance of Being There
Journal of Pediatric Oncology Nursing 23(3); 2006 127
of comforting measure for adolescents who were
experiencing discomfort due to their symptoms. For
example, one 12-year-old noted how her family was
there for her when she experienced a stomachache by
commenting,
Mom, Dad, even my like my sister helped . . .
like, whenever my stomach was hurting my
mom rubbed it and then like it made me fall
asleep so, and like kind of forgot about it.
Special friends usually helped to comfort adolescents
when they were not feeling well by trying to
distract them and to get them to try thinking of something
else. Special friends were also noted by adolescents
to be there for them by acting in a more gentle
and quiet physical manner around them when they
were not feeling well. For example, one 13-year-old
noted how his friend played less roughly around him
when he felt sick, and this helped to comfort him.
Being there to hold my hand. This second way of
being there involved the simple act of holding the
adolescent’s hand during a time when the adolescent
was experiencing increased physical or mental stress.
Although it was associated with the act of comforting,
it was so important to adolescents that it deserved to
be identified as another and distinct way for others to
“be there.” All adolescents, regardless of age, valued
having a parent or nurse hold their hand during a
painful procedure.
Special friends also were reported to “be there” for
adolescents by holding their hand. However, adolescents
equated hand-holding by friends metaphorically
during those situations when they needed an
extra boost of courage in doing something related
to their world outside the illness world, such as going
to a shopping mall for the first time after losing all
their hair.
Being there to keep me from feeling less lonely.
The third way of being there involved having a family
member, health care team member, or special friend
physically around the adolescents but not necessarily
carrying out some specific physical act. Just being close
by the adolescent was what was important to adolescents;
that is, the other person did not necessarily have
to say or do anything. What was valued about the physical
presence of the individual was that it helped the
adolescents to feel less lonely in their present situation.
I guess it is because you get so used to sitting by
yourself that you do not want to sit by yourself.
Even if you are not talking to them, you know if
you wanted to turn and comment on something
on the television show, you would have someone
to turn to and say something to. . . . This probably
sounds creepy but being able to hear someone
next to you breathing . . . I mean if you are
sitting by yourself, everything is just completely
silent and everything feels so dead. I do not
know you just feel so completely by yourself.
Adolescents especially felt protected when their
family members were there to watch over them when
they were hospitalized. When family members could
not be there for adolescents, the presence of a health
care team member was welcomed by the adolescents,
as reinforced by this 16-year-old female:
Like I remember one night, I do not know where
my mom was, I think she was driving my dad
home and I could not sleep because she was not
there and stuff like that. And I remember one of
my nurses; she came in and sat with me until
I fell asleep.
The special friend especially kept adolescents from
feeling less lonely during those times when the adolescents
were unable to spend a regular evening out
with their other friends, like going to a movie or
party. Having that special friend stay with them
instead of the friend going out with other friends
meant so much to the adolescents, as one 15½-yearold
related:
Through all of my treatments or whatever, Karen
[her friend] usually came over and . . . when I used
to come back on Fridays and I had just gone to the
operating room and I was still kind of dopey or
whatever, and she always used to come over and
just lay and watch television with me. And she
said she knew we were not going to go out anywhere
or do anything really interesting, she would
just come over and watch television with me.
Being there to help me feel like I have a life. The
fourth way involved others encouraging adolescents
to maintain a life other than the life that evolved
around the cancer and its treatment. For the adolescents,
it was really important for others not to treat
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Woodgate
128 Journal of Pediatric Oncology Nursing 23(3); 2006
them differently or as the sick patient. Adolescents
wanted their family and friends to act “normal”
around them. In helping adolescents feel like they
have a life, it was important for their special friend to
help them keep close ties with their peers and school,
as one 15-year-old adolescent noted:
Like my best friend has been with me through
everything and has always been with me. She
knows that I have a life other than cancer. She
knows!You know she still says “Oh, did you hear
about what happened at school and so we did this
and that, you know.” My friendship with her is
just like before. But with other people I am not
even sure why, they just seem all awkward around
me and do not know what to talk to me about.
It was important for families to help adolescents to
maintain a life with their friends. However, equally
appreciated by adolescents was having their families
help them to maintain a life with their own family. The
adolescents really valued the time spent with their families
such as going out for dinner or going to a movie. In
helping adolescents maintain a life other than the life
that evolved around the cancer and its treatment, it was
important for health care team members to show adolescents
that they were interested in adolescents as persons
and not solely as patients. Health care team
members needed to express an interest in the lives of
adolescents and, when possible, scheduled treatments so
that they did not interfere with events in their lives.
Being there to keep me positive. The fifth way of
being there involved others in the lives of adolescents,
not only maintaining a positive attitude about
the cancer but also being there to help adolescents
maintain a positive attitude. Especially important
to adolescents was maintaining a positive attitude
during the more difficult times, when adolescents
talked about giving up on continuing the heavy cancer
treatment regimens. As one 14½-year-old adolescent
reinforced, it was her family that helped her to continue
on and maintain a fighting attitude:
I think you get your attitude from your family!
Like my dad said, “We are going to do it, we are
going to get through it. You just have to go out
and do it, and be done with it.” I think he is the
one that I got that attitude from.
Adolescents also valued health care team members
who were there to remind them of the importance of
maintaining a positive attitude and getting on with life.
First you know Sandy [nurse clinician], one of
the first things she says is “if you are going to
sit in that bed and say my life is over, so I am
dead, you will be because the chemotherapy
may stop it at that point from coming back but
it will not help you, rehabilitate you, and help
you get better. It is you! It is a lot of times mind
over matter, even if you do not want to you have
to get out of bed and try your best.”
The adolescents really valued those special friends
who helped them to believe and feel that they would
be all right and get through the cancer experience.
Being there for me despite everything. The last
way of being there involved others standing by the
adolescents during those times when the adolescents
felt or acted differently. Adolescents especially
valued parents, siblings, and friends who were patient
with their changing behaviors and moods and who
did not judge them. The adolescents needed to know
and feel that they were still cared for and loved by
others, despite any unusual behaviors or moods on
their part.
Consequences of Being There
Because of the supportive relationships, most adolescents
realized for the first time what it truly meant
to “be there” for others and to have others stand by
despite everything. However, although the 3 key supportive
relationships were essential in helping adolescents
get through cancer, the dynamic nature of these
relationships and the changing context of “being there”
resulted in adolescents experiencing both positive and
negative consequences.
Consequences associated with the health care
team. Positive consequences of health care team
members “being there” for the adolescents include
adolescents developing a special respect for the
health care team members. This respect was
grounded in the adolescents viewing members of the
health care team to be really hardworking individuals
and “very special people, caring people.” Some of the
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adolescents also developed an increased respect for
the health profession in general to the point that they
had plans to pursue some profession in the health care
field. Another positive consequence included the adolescents
gaining more self-confidence because of the
recognition and praise that they received from the
health care team members in relation to their determination
and persistence in dealing with the cancer
treatment regimens.
Adolescents, however, also acknowledged that there
was a negative side to developing close relationships
with members of the health care team. Specifically,
some of the adolescents had a harder time dealing with
the lesser amount of attention that they received from
the health care team members as they became healthier
and required less monitoring. These adolescents
expressed a sense of sadness in feeling that they were
no longer the most important patients. They felt that
the health care team members no longer cared for them
in the same way as they did when they were in the
early stages of their cancer treatment. Although the
adolescents were glad that they were getting better and
did not have to spend as much time in the inpatient and
outpatient cancer clinics, they missed being the center
of attention or, as one 12-year-old female reinforced,
“missed no longer being the star.”
Consequences associated with special friends.
Having friends stand by them during their cancer
treatments made the adolescents not only appreciate
the importance of having good friends in their lives
but also resulted in them feeling more responsible and
caring to their friends, as is made evident by the following
comment of a 16-year-old female adolescent:
But with like my friends, I am very careful when
it comes to my friends and stuff. Then again,
they are really careful when it comes to me.
Just as important as it was to receive support, all
adolescents stressed the importance of the need to
reciprocate their support to their friends who were
always there for them. However, one negative consequence
of having a special friend was that the adolescents
could not always be there for their special
friend during those times when they needed their support.
Even though this usually occurred during the
times when the adolescents were not feeling well, it
did not make it any easier for the adolescents. They
still experienced feelings of guilt for not being able to
be there for their friend. Their feelings became only
more intense when they sensed the frustration that
their special friend was undergoing because of the
adolescents’ lack of support.
Consequences associated with the family.
Understandably, because the family was identified by
the adolescents as the most supportive relationship, it
was the relationship that adolescents talked about most
in terms of positive and negative consequences. On a
positive note, always having their families stand by
them confirmed to adolescents how much their families
really cared for and loved them, as one 15-yearold
female adolescent reinforced:
Well, you kind of knew that your family cared
but, it is just that they never really had a chance
to show you. It kind of gives them a chance to
show you.
Although each adolescent stressed that every adolescent
experiences cancer differently, the one thing that
adolescents found they shared was acquiring a greater
appreciation for their family. One 15-year-old adolescent
related,
Well Ann [adolescent with cancer] and I were
talking about how is cancer the same for us and
we found that first of all it brings you a lot
closer to your family because they are the ones
that are with you, for all of it, for everything like
that. . . . And me and her both agree on it that we
would rather rent a movie and sit home and
watch it with our families, then go out and sit in
someone’s basement with our friends.
Overall, the adolescents felt that having their
family stand by them during difficult times resulted
in the adolescents becoming closer to their family.
This was even the case for those adolescents who
experienced other family problems prior to and after
cancer.
Despite the importance that “being there” had in
family relationships to the adolescents with cancer, it
also caused periods of increased stress and strain for
the adolescents. Sometimes, the closeness to family
members, especially parents, became too much for
them, as one adolescent reinforced:
The Importance of Being There
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Woodgate
At times it kind of got overwhelming. When I
just wanted everyone to leave me alone, it was
like “Go away!” And now it still seems like my
mom is always worried about me. I just feel like
telling her, “Go away and leave me alone. I can
take care of myself.”
Sometimes, the adolescents just wanted to be
left alone but still have the support of their parents
by “being there” in mind and spirit by providing
psychosocial-emotional support but not necessarily
having a physical presence around them. However,
most parents felt that their being there was only valuable
if they were actually “doing” something instead
of “just being.”
Although adolescents wanted their families to be
there for them, this was sometimes at the expense of
spending less time with their friends. At times, the
adolescents wanted to spend more time with their
friends and/or were torn between wanting to be with
their families and wanting to be with their friends.
One 16-year-old female adolescent expressed,
Like I do not mind spending time with my family,
in fact I love spending time with my family.
Like that is what I have got to do is spend more
time with my family. The part that makes me
sad is not being able to spend as much time with
my friends.
The increased support that adolescents received
from their families also resulted in adolescents at
times experiencing increased feelings of guilt for all
the extra burdens they perceived their families had
experienced because of the cancer diagnosis. Most
often, they felt responsible for increased disruption
their illness had on individual family members and on
the family unit as a whole. They expressed guilt that
their families were doing so much for them.
Adolescents especially expressed concern that
their siblings missed out on a lot of things because of
all the time the family had to direct in managing the
illness. Also, although the adolescents recognized
why their brothers or sisters sometimes felt left out at
times, adolescents expressed frustration not knowing
how they could “be there” for them. Adolescents also
recognized the suffering that the family members
experienced because of the need to “be there” for
them, as this 15-year-old adolescent reinforces:
It is terrible going through it, but I can see it
being more terrible, not more terrible, but really
terrible to be part of the family who has to
watch somebody go through it cause like you
know you feel so bad, like there is just no way
you can help them. It’s just that you feel really
helpless not being able to do anything as a family
member.
Discussion
Findings from this work reinforce previous studies
that stress the importance of having a strong support
system in helping adolescents cope with cancer
(Haluska et al., 2002; Ishibashi, 2001; Kyngäs et al.,
2001; Neville, 1998; Ritchie, 2001). As previously
reported, adolescents value the support they receive
from health care team members (Hedström, Skolin,
& von Essen, 2004), friends (Manne & Miller, 1998;
Ritchie, 2001), and especially the support that comes
from their families (Haluska et al., 2002; Harris &
Zakowski, 2003; Kyngäs et al., 2001; Neville, 1998;
Ritchie, 2001; Trask et al., 2003). However, this
study adds to our understanding of the importance
that the phenomenon of “being there” has in the support
experiences of adolescents with cancer. To date,
the phenomenon of “being there” has received minimal
attention in the pediatric oncology literature.
Most of what is known about it is derived from the
perspective of someone other than the child. For
example, Romaniuk and Kristjanson (1995) revealed
that parents identified being supportive to their
children by “just being there.” However, “just being
there” referred solely to the parents having a physical
presence. In this present study, “being there,” as
experienced by adolescents with cancer, involved
more than just a physical present but also a psychosocial-
emotional presence within a supportive
relationship.
Other references to the phenomenon of “being there”
originate mainly within the general nursing literature in
relation to nursing presence and the different ways that
nurses can be there for their patients (Doona, Haggerty,
& Chase, 1997; Osterman & Schwartz-Barcott, 1996).
Nursing presence is conceptualized as an intersubjective
encounter involving one individual giving himself
or herself to that other person and is viewed as essential
to personalizing nursing care and maintaining the
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The Importance of Being There
Journal of Pediatric Oncology Nursing 23(3); 2006 131
sacredness of human suffering (Doona et al., 1997).
This conceptualization of nursing presence is congruent
with the adolescents’ perspectives of those relationships
that they found to be most supportive. The importance
of conceptualizing social support within the
framework of “being there” may serve to be more valuable
with respect to helping adolescents with cancer
sustain connections to those individuals most important
in their lives.
Despite the importance that supportive relationships
and the supportive behavior of “being there” had on
adolescents getting though cancer, the adolescents
nonetheless experienced periods when the support was
a source of stress for them. With respect to supportive
relationships involving health care team members, adolescents
expressed feeling a sense of loss near the end
of their treatment regimen. Although it was the support
they received from the health care team members that
helped to facilitate a therapeutic relationship, the downside
of developing a close relationship was that adolescents
experienced another loss or even feelings of
abandonment when ending their close relationship with
the team. Further research examining the transition
experiences of adolescents with cancer is needed with
attention to identifying key supportive behaviors that
adolescents value at particular points in time of the
cancer trajectory. Although none of the adolescents
transitioned from pediatric to adult health care
providers during the course of this study, this is a priority
issue in the health care of youth with chronic conditions
such as cancer that requires further understanding
with respect to how nurses can best facilitate transitions
(Reiss, Gibson, & Walker, 2005).
Adolescents had related a number of stressors with
respect to their supportive relationships involving
family and friends. This included adolescents experiencing
feelings of guilt with respect to family members
always having to “be there” for them at the
expense of other family members and the family unit
as a whole. In addition, adolescents experienced guilt
and frustration in not always knowing how to “be
there” for others, especially when it came to their siblings
and their friends. Further investigation of adolescents’
perceptions of what the roles of friends and
especially siblings should be in their cancer care and
how health care professionals and parents can best
support these roles is warranted. More needs to be
known about healthy and ill siblings’ perspectives of
what it means to “be there” within the context of
childhood cancer.
There was also a point of discrepancy between the
central role of parents for support and the role of
stress inherent in that parent-child constellation.
Although adolescents viewed the support from their
parents as extremely important, the adolescents did at
times struggle wanting to be with their parents yet at
the same time also be with their friends. With all the
additional challenges that adolescents with cancer
must face, it is not surprising that they may have difficulty
in managing all their key relationships. The
struggles that adolescents had in managing supportive
relationships, coupled with their associated feelings
of guilt and frustration, indicate the need for
offering guidance in helping adolescents manage key
supportive relationships.
Last, the finding that adolescents experienced an
increased closeness and desire to be with their families
may be perceived to be a maladaptive behavior,
considering that adolescence is a stage where the adolescent
should be in a period of transition and transformation
in the parent-child relationship and should
be experimenting with disengagement from family
(Haluska et al., 2002). Indeed, there is the concern
that adolescents may have difficulty establishing independence
in young adulthood (Nichols, 1995; Ressler,
Cash, McNeill, Joy, & Rosoff, 2003). However, for
the adolescents in this study, developing an increased
closeness to families was not seen as a loss of independence
but more as an appreciation of what their
families did for them. Although adolescents wanted
their families to “be there” for them, the adolescents
also wanted to “be there” for their families, which
suggests awareness for increasing interdependence
between family members and not increasing dependence
on family members. However, further research
is needed that will help determine the impact supportive
relationships have on the lives of adolescents
with cancer as they transition from adolescence to
adulthood. The way in which adolescents and their
families manage family closeness and disengagement
during the childhood cancer trajectory may be central
to future psychological and social adjustment, considering
that the relationship between adolescents
and their parents is important both as an outcome in
its own right and as a precursor to adult functioning
(Banner, Mackie, & Hill, 1996).
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132 Journal of Pediatric Oncology Nursing 23(3); 2006
Limitations
There are limitations of this study. Foremost is
that the findings are derived from a small number of
adolescents and, therefore, future research is required
to confirm the category of social support and its
subcategories and attributes. Lack of cultural diversity
in the sample is another limitation that warrants future
work involving adolescents from different cultures.
Recommendations for Clinical Practice
Although the study’s findings require further confirmation
before they can be generalized to other adolescents
with cancer, the knowledge gleaned from this
study may help to guide nurses in their assessment and
application of interventions directed at promoting positive
social support experiences in adolescents with
cancer. Specifically, it may be useful to focus more
attention on how significant relationships in adolescents
can be strengthened considering the phenomenon
of “being there” was seen by the adolescents as a way
to maintain connections with their families, friends,
and other significant individuals. In determining what
are the most appropriate support resources to offer
adolescents, nurses need to take into account what
resources will best strengthen key relationships in the
adolescents’ lives. Considering that peer relations are
of central importance to adolescents, nurses may assist
adolescents by suggesting strategies to them and their
parents that will help adolescents nurture their relationships
with friends. For example, having adolescents
develop their own weekly activity schedule that
would incorporate specific times set aside for their
parents as well as their friends may help to ensure that
adolescents can be with those individuals whom they
most want to be with. Nurses also need to teach adolescents
and their families that “being there” does not
always have to involve the individual carrying out or
“doing” some specific act of activity—“being there” in
mind and spirit by providing psychosocial-emotional
support at times may be more valuable than the act of
physically doing something. Individual and group
counseling that provides adolescents the opportunity to
discuss their feelings about their encounters with positive
and negative supportive relationships may also be
helpful for those adolescents who experience increased
challenges related to relationships. Last, adolescents’
feelings of abandonment from nurses and other health
professionals reinforce the need for more careful planning
for transitioning adolescents throughout the
cancer trajectory. Nurses can assist adolescents by
preparing adolescents for decreasing support by the
health care team as well as plan provision of this
support accordingly.
Conclusions
In conclusion, the act of others “being there” was
seen by the adolescents as the key element of a supportive
relationship. Although the 3 key supportive
relationships in the lives of the adolescents were essential
in helping adolescents get through cancer, these
relationships were at time a source of stress for adolescents.
Further research is required that adds to the key
ways that others can “be there” for adolescents, with
attention to capturing the similarities and differences
of adolescents with diverse cancer diagnoses and illness
trajectories.
Acknowledgments
The author is supported by a Canadian Cancer
Society (CCS) Research ScientistAward and a Manitoba
Health Research Council Establishment Award. The
author would like to thank all the adolescents for sharing
their experiences with her.
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