‘It made me think a little different’
a qualitative study of young adult cancer survivors’ experiences
of cognitive therapy in cancer rehabilitation.
May Aasebø Hauken,RN, cand.polit, PhD
Center for Crisis
Psychology, Bergen, Norway
Linda Viken, Physiotherapist, MSci
Red Cross Haugland
Rehabilitation Center, Norway
Hauken MA & Viken L. (2015)
‘It made me think a little different’ a qualitative study of
young adult cancer survivors’ experiences of cognitive therapy in cancer rehabilitation.
International Journal of Psychosocial Rehabilitation. Vol 20 (1) 27-44
Center for Crisis Psychology, Fortunen 7, 5013 Bergen,
e-mail address: firstname.lastname@example.org
adult cancer survivors (YACS) have increased risk for psychosocial
late-effects. Cognitive therapy (CT) aims to enhance coping in
survivorship, but research of CT interventions and how YACS experience
these lacks. This study’s aim was to explore YACS’ experiences of CT in
a rehabilitation program. A phenomenological-hermeneutical design was
used, including semi-structured interviews of 17 YACS who completed a
Two main themes and three corresponding
subthemes emerged: The first theme, «CT as a tool», was elaborated by
the subthemes «education and practicing», «follow-up» and
«internalization». The second theme, «the perceived usefulness of CT»
was clarified by the three subthemes «changed thought patterns»,
«insight and acceptance» and «handling a new life-situation».
participants experienced CT as a useful tool in their rehabilitation
process that changed their thought patterns and helped them getting
insight and acceptance as an important basis to handle their new
Keywords: Young adult cancer survivors, cognitive therapy, cancer rehabilitation, qualitative method
adult cancer survivors (YACS) are a small and understudied group of
survivors, with specific challenges related to their vulnerable period
of life, and their increased risk for morbidity and long- term effects
(Albritton et al., 2006; Institute of Medicine, 2013). There is a
research gap in survivorship-care for YACS, especially related to
rehabilitation (Hall et al., 2012; Institute of Medicine, 2013).
Cognitive therapy (CT) is seen as a promising intervention for
enhancing coping and quality of life in survivorship (Juvet et al.,
2009; Osborn, Demoncada, & Feuerstein, 2006), but we have no
knowledge of how YACS survivors experience CT in cancer rehabilitation.
in young adulthood (18-35 years) is rare (Albritton, Barr, &
Bleyer, 2009; Cancer Registry of Norway, 2014), where the cancer types,
the genetic, biological and physiological characteristics are unique
(Bleyer & Barr, 2009; Institute of Medicine, 2013). The treatment
is often aggressive, multi- modal and long lasting (Albritton et al.,
2009; Bleyer & Barr, 2009). For YACS, being in a vulnerable period
of life (Buchmann & Kriesi, 2011), cancer adds a tremendous burden
and life disruption (Albritton et al., 2006). Cancer in YACS also
includes high risks of severe late-effects, where some are life
threatening as cancer recurrence, subsequent cancers, and chronical
diseases (Brearley et al., 2011; Woodward, Jessop, Glaser, & Stark,
2011). Other late-effects compromise health and well- being in a long
term (Woodward et al., 2011). These range from physical promlems such
as pain, lymphedema, infertility and fatigue (Harrington, Hansen,
Moskowitz, Todd, & Feuerstein, 2010; Institute of Medicine, 2013),
phsycosocial problems as anxiety, depression, fear of recurrence and
impaired self-esteem (Albritton et al., 2006; Zebrack, 2011),
impairments in social functioning (Hall et al., 2012; Zebrack, 2011),
as well as risk of educational delay and financial problems (Brearley
et al., 2011; Parsons et al., 2012). Despite these impairments that
seriously may jeopardises YACS’s ability to move into well-functioning
adulthood (Sansom-Daly et al., 2012), they report inadequate follow-
ups and rehabilitation interventions (Brearley et al., 2011; Hall et
al., 2012; Keegan et al., 2012).
Studies of rehabilitation
interventions for YACS lacks (Johansen, 2007; Juvet et al., 2009), but
the two most evident effective elements in cancer rehabilitation for
adults are physical activity (Speck, Courneya, Masse, Duval, &
Schmitz, 2010) and different psychosocial interventions (Faller et al.,
2013; Hersch, Juraskova, Price, & Mullan, 2009; Juvet et al., 2009;
Osborn et al., 2006). For the latter, CT is highlighted as an important
intervention, showing positive effects on coping, empowerment,
quality of life, depression, anxiety and fear of recurrence (Faller et
al., 2013; Fors et al., 2011; Hersch et al., 2009; Juvet et al., 2009;
Lebel et al., 2014; Osborn et al., 2006), as well as fatigue (Eichler
et al., 2015; Gielissen, Verhagen, Witjes, & Bleijenberg, 2006). In
general, the evidence-base of CT is very strong to a wide range of
psychological problems (Beck, 2005; Hofmann, Asnaani, Vonk, Sawyer,
& Fang, 2012), but the interventions vary greatly with respect to
psychological strategies and technics, intervention content and
duration. In cancer rehabilitation, CT interventions typically include
education, focusing of unhelpful thoughts or behaviours as well as
coping skills training (Faller et al., 2013; Hersch et al., 2009; Juvet
et al., 2009; Osborn et al., 2006). The majority of these studies are
quantitative, including only brief decriptions of the interventions,
and it is not evident how these interventions should be designed (Fors
et al., 2011). We have not found any studies eloborating how CT is
experienced by cancer survivors, neither any studies of CT including
YACS, indicating a research gap. In line with this, Sansom-Daly et al.
(2012) state that CT is a promising, but mainly untested intervention
that may equip YACS with coping skills to successfully manage their
cognitive therapy (CT), often used synonymously with cognitive
behavioral therapy (CBT), refers to a family of interventions that
combine a variety of cognitive, behavioral, and emotion- focused
techniques (A.Beck, 2005; Hofmann et al., 2012).
CT is based on
learning- and cognitive psychology, relating on the cognitive model
explaining how thoughts, emotions and bodily reactions mutually
interacts (A. Beck, 2005; J. Beck, 2006). This model, also called the
cognitive diamond, explains that how an individual perceives and
interprets a given situation determines the feelings and behaviors
associated with the event (Figure 1).
behaviors are influenced and determined by how an individual structure
his or hers world through cognitions stored in memory as schemes,
developed from prior experiences (A. Beck, 2005; J. Beck, 2006). These
schemes are activated in special situations or states of mind, and will
affect emotions, behavior and psychological activation. Maladaptive
cognitions may thus contribute to the maintenance of emotional distress
and behavioral problems. In contrast, problems can be reduced, or
solved, by consciously being aware of these mutual relationships (A.
Beck, 2005; J. Beck, 2006; Hofmann et al., 2012).
involves a short time, structured and present-oriented training, aiming
to teach individuals to identify and moderate their negative,
automatically thoughts (NAT) and maladaptive behaviors, and thus reduce
emotional stress (Arendt & Rosenberg, 2012; Hofmann et al., 2012).
This presupposes that the individual learn to detect and be conscious
of his/hers negative, automatically thoughts (NAT), to explore and
questioning misinterpretations, destructive behavior and assumptions,
and then find realistic and alternative reevaluations, followed by
acting as this reevaluation is true.
of this study is to explore YACS’ experiences of CT in a rehabilitation
program after finishing cancer treatment. More specifically, we
elaborated the research question: «What experiences do YACS have in
using CT in a rehabilitation program? »
study is a part of a larger study of rehabilitation of YACS (Hauken,
2014). Based on the present study’s aim, we conducted a
phenomenological - hermeneutical research design (Creswell, 2007 ).
design aims to explore the meaning of the lived experiences of
individuals about a phenomenon (phenomenology), here YACS’ experiences
of CT in cancer rehabilitation, and the researcher’s interpretations
(hermeneutics) in order to gain new insight and understanding of a
phenomenon (Creswell, 2007 ; Malterud, 2011).
were invited to join the study by different websites and healthcare
professionals in hospitals and in primary healthcare in Norway (Hauken,
2014). The eligibility criteria were a) YACS aged 18- 35 years, b)
finished cancer treatment within the last 5 years, and c) all cancer
diagnoses. An oncologist or general practitioner verified the YACS’s
rehabilitation need and referred them to the study. The final sample
included 17 informants fulfilling the 6-month rehabilitation program.
Table 1 outlines the background variables, diagnoses and cancer
Table 1: Demographic and Medical Presentation of Study Population
Working or Study Full Tim/part
Full Sick Leave
Type of cancer
Head & neck
Months since diagnose
Type of treatment
Only surgery or
Months of treatment
Month since treatment
rehabilitation program was structured around three weeks of residential
rehabilitation with one- week follow-up after three and six months, and
based on six elements: 1) individual goal-setting, 2) physical activity
3) individually follow-up, 4) peer-support, 5) psycho-education based
on CT and 6) a next of kin-weekend. The intervention is described in
detail elsewhere (Hauken, 2014). Here, we will only focus on the
psycho-education based on CT. The psycho-education aimed to increase
the participants’ knowledge of survivorship-issues, and to give them
tools to cope with their survivorship challenges (Faller et al., 2013;
Fors et al., 2011; Luknes & McFarlane, 2004).
participated in seven 90 minutes sessions of psycho-education during
their primary stay, covering topics that were particularly relevant to
them. Each session included an introduction, a teaching, training and
discussion-section, followed by summing up and homework. CT was used
consistently throughout all sessions as a method to discover and to
cope with negative thoughts, emotions and maladaptive behaviors (Arendt
& Rosenberg, 2012; J. Beck, 2006), exemplified by the YACS’s own
experiences. The 'five-columns-scheme' was used as a practical tool for
detecting and revising negative thoughts, emotions and behaviors
(Arendt & Rosenberg, 2012) (Figure 2).
YACS also practiced CT by writing their own challenges in the scheme as
homework between the sessions. For each topic, they received
Table 2 shows the specific content for each session, and homework and literature.
Table 2: Organization and content of the psychoeducation
Illustrate & present:
Who am I?
What am I god at?
short term & long-term
Introduction to Cognitive Therapy (CT), Wilhemsen: ”Boss in your own
life”, Chapter 1-3
Basis of Cognitive Therapy
Intro: Summing up from session 1 & homework
Teaching & discussion: Intro to CT, The Cognitive Diamond& ABC tool
Use ABC on one of the main topics and identify thoughts and attitudes
Wilhemsen: ”Boss in your own life”, Chapter 10
Education and Work
Intro: Summing up from session 2 & homework
Teaching & Discussion: Education and Work related to cancer, rights & possibilities
Use ABC related to own situation regarded study/work
Norwegian Cancer Society: “Rights for patients and relatives”
Thoughts and Emotions
Intro: Summing up from session 3 & homework
Teaching & discussion: Coping of physical and psychosocial late effects & use of CT
Use ABC related to own situation regarded coping/negative thoughts and
Wilhemsen: ”Boss in your own life”, Chapter 10
Exercise and Physical Activity
Intro: Summing up from session 4 & homework
Teaching & discussion: Physical activity & fatigue after cancer treatment. Benefit of
physical activity ,how & what to exercise (stepwise)
Use ABC related to own situation regarded to physical activity
Norwegian Cancer Society:
“Physical Activity After Cancer Treatment”
Me and my Network
Intro: Summing up from session 5 & homework
Teaching & discussion: Network. Illustrate& present: «Who are in your network?”
Cohabitation and sexuality
related to cancer
Use ABC related to own situation regarded network/sexuality
Norwegian Cancer Society:
“Cancer and Sexuality”
The Way Ahead
Intro: Summing up from session 6 & homework
Teaching & discussion: Summing up on theme 1 – 6. What learnt? What to bring with you?
achievement – short time
on re- stay
second author, an experienced physiotherapist, specialized in CT, led
the psycho-education. In addition, specialists in the different topics
conducted the lectures. At the follow-up visits, the participants got
one 90 minutes session using CT each week, focusing on their
experienced challenges at home. Altogether, the structured
psycho-education and CT counted for approximately 15 hours.
first author collected all data by in-depth interviews at the end of
the rehabilitation program. A semi-structured interview guide with
open-ended questions was developed to ensure consistency related to the
YACS’ experiences of CT in the rehabilitation program (Creswell, 2007
). The main question in the guideline was: “Can you please tell me how
you have experienced using CT in this rehabilitation program?”
Follow-up questions were related to the different elements of the
content and duration of CT, if and how the YACS had used CT, as well as
their total experience. The interviews lasted for 45- 70 minutes, and
were digitally recorded and transcribed by the authors.
Text Condensation (STC), a four-step cross-case analyses, was used to
analyze the data (Malterud, 2012). However, analyses of qualitative
data is not a straight forward process, but engage the researchers in
processes moving in analytical (hermeneutical) circles including
several facets of analyses (Creswell, 2007 ). Both authors analyzed and
coded the transcribed data separately to enhance validity, and then
discussed and performed the rest of the analyses together (Creswell,
2007 ; Malterud, 2012).
Following the steps in STC, we first
read the interviews to obtain a general impression. The general
impression revealed that the YACS emphasized different facets of using
CT. Second, we re-read the interviews and extracted units of meaning.
We used NVivo 9 software package to code and sort data. In this
process, we extracted six codes. Third, these codes were condensed into
groups and subgroups during an analytic circle between the identified
codes, the transcribed interviews and discussions. We concluded with
two main units of meaning or themes: “CT as a tool” and “The perceived
usefulness of CT”. Further analyses revealed that the two meaning units
had three subgroups each. Finally, we validated the analyses by
comparing the findings against the interviews to ensure that we had
captured the informants’ expressed and intended meanings. All
interpretations reached consensus. We summarized by using direct
statements. Table 3 outlines the analyses process.
Table 3: Overview of the STC analyzes process
a total impression
the contents of individual meaning units
a) The authors read the transcribed interviews separately
b) Discussed the
total impression to consensus
a) The authors coded the data separately
b) Discussed the
codes to consensus within the codes
a) The authors analyzed the contents separately
b) Several discussions to consensus
b) The authors discussed the findings against the
c) Each author found direct statements to elucidate
units of meaning and discussed to consensus
Identified meaning units:
CT used consciously and
unconsciously Different elements:
- process over time
- practical use/effect
1. CT as a tool
2. The perceived
usefulness of CT Subthemes:
-changed thought patterns
-insight and acceptance
-handling a new life
Summarized findings and presenting direct
statements within the abstracted contents
Used CT/not used CT
Use of CT/applications
Changed thought patterns
Identified meaning units
** Source: Number of informants talking about the code
(N = 17)
*** References: Number of quotes related to the code
Western Norway Regional Committee of Research and Ethics, and The
Norwegian Social Science Data Services (NSD) approved the study. We
followed their guidelines throughout the study. The YACS got written
and verbatim information about the study, and all participants gave
The aim of this study
was to explore how YACS’ experienced CT in a rehabilitation program.
The analysis reviled two main-themes: «CT as a tool» and «The perceived
usefulness of CT». Both themes had several facets, and three sub themes
emerged as important elements within each theme.
Main theme 1: «CT as a tool»
YACS experienced that CT was a useful tool in their rehabilitation
process, exemplified by these quotes: «In fact, it is a very good tool.
Yes, at least it has learnt me a lot. And I will continue to use it.”
(P 19), and «I think it has been a tool. I dare not think about it if I
had not been here…» (P 7). Even those few who did not see CT as a
useful tool for themselves, still acknowledged it as a suitably tool
for others. However, the YACS highlighted that you cannot use a tool
without learning how to use it. The analyses revealed that «CT as a
tool» was dependent and elaborated by the three subthemes «education
and practicing», «follow-up» and «internalization» which described
important elements of this learning process.
“Education and practicing”
majority underlined that the use of CT as a tool was dependent of
education and practicing to understand how it worked: «Because you get
a tool…and you have to learn how to use it. This requires practicing.”
(P 6). The basic knowledge of the cognitive diamond, and how
negative automatic thoughts (NAT), emotions, bodily reactions and
behavior were connected, was very important: “It helped a lot… And to
have the facts, how it works and to have the knowledge…I have realized
that knowledge is good and can help me a lot on my way to a life…” (P
Additionally, the participants underlined that using their
own and others “real life” examples and write these in the «five-
columns scheme» during the sessions, was an important way to
acknowledge the relevance of CT into their own life situation. The
scheme was experienced as a practical tool in the learning process,
helping them to grasp the structure of how to use CT. However, several
participants found it difficult to formulate and write their problems
on their own as part of their homework: «It is most just thoughts ....
I have tried to write it down, but [I] do not get it formulated so....
« (P 20) and «To write it down, then I just felt a bit lame» (P 13).
a part of the learning process, the participants also got readings
related to the actual topic as homework, but the YACS experienced these
differently. Some expressed that the readings filled out the education
and practical training in the sessions in a good manner, while others
had trouble in concentrating and called for less and more specified
literature related to their situation: «Related to the book, then… I
think a lot of us read it, but reading page up and page down…I think it
do not give the right understanding. …..Shorter and easier perhaps…» (P
Summing up, learning to use CT seem to be dependent of an
introduction of the basic elements in CT, how the cognitive diamond
work, as well as an introduction of the “five-column scheme”.
practicing CT by using the YACS’ own challenges, as examples seem to be
important. The initial practicing by writing their own challenges at
home as well as comprehensive readings seemed to be more challenging.
majority experienced that learning to use CT was a process in need of
time and follow-up. The YACS stated that the knowledge had to be
internalized, where training and focus over time was essential: «...It
has to be followed-up over time if you shall learn to use CT. You have
to have some time to let it sink in» (P 4). In contrast, a few
participants did not like this focus over time because they found it
difficult to “open up” and be confronted with their own challenges: «I
did not want to …dwell a lot with it… and puh…go through those
[difficult thoughts]” (P 8). Still, these participants acknowledged
that this was necessary to be able to cope with their present
challenges: «I found it very useful to be forced to…, yes, to deal with
it myself. To address issues and work constructively. » (P 8)
YACS had only one session of CT on each of their two re-stays, focusing
on their experiences at home. These challenges were guided on by using
the “five-column scheme”: «I used my problem as an example in CT, so
then I got to think of it in a different way» (P 13). However, several
informants called for more CT sessions at the re-stays: «You need some
time, even if it is very simple. It is not as if you need many hours to
understand what it is. You just need practice and maybe more time on
the re- stays…I would like to have even more focus on this way of
thinking. Not just focus, but more follow- up” (P 13).
participants found it difficult to share their problems openly in the
group, especially related to sexuality and fertility problems, and thus
needed more individual follow-up.
Summing up, learning to use CT
as a tool seem to be a process over time in need of continuously
repetition and professional follow-up.
emerged as the third subtheme in using CT as a tool, describing how the
participants eventually internalized CT in different ways. The majority
worked with CT in line with the program by first writing down actual
examples, before they eventually freed themselves from the scheme. At
the end of the program, most of the informants expressed that they had
internalized CT and used it more or less automatically: «Now I do not
write, I wrote in the beginning, but now I think. To say it in a simple
way, I try to think alternatively” (P 2) and «I use it, have
internalized it. I have practiced on myself, inner training I guess» (P
Some participants expressed that they had CT back in their
minds, but did not use it consciously. In contrast, some YACS used CT
consciously and still wrote down their challenges: «Mmmmm, I write too
….on the scheme, because at a certain point I discovered that I really
thought negatively about myself, that I did not COPE…» (P 17).
up, the majority of the participants had learned to use CT, and still
used it, at the end of the rehabilitation program, even if they had
internalized it at different levels. However, the degree of
internalization of CT seemed to be connected to which, and the degree
of, survivorship challenges they experienced.
Main theme 2: «The perceived usefulness of CT»
«The perceived usefulness of CT» emerged as the second main theme. In
general, all the YACS expressed that CT was useful in their
rehabilitation process. They described several aspects of this
usefulness, elaborated in the three subthemes: «changed thought
patterns», «insight and acceptance» and «handling a new life condition».
«Changed thought patterns»
majority of the participants expressed that CT had changed their way of
thinking, by being able to discover and be aware of their own NAT: «At
least, now I take myself in thinking wrong….Yes, automatic thoughts
that comes, and then I take myself …» (P 13). The most frequent
mentioned NAT were related to fatigue, sexuality and fertility issues,
follow-up, and cancer recurrence. The YACS underlined that CT not
necessarily was an easy way to solve their challenges, because some
problems were very realistic as for example physical alterations,
fertility problems and risks for cancer recurrence. But identifying NAT
still seemed to be a prerequisite to be able to change their thought
pattern and handle the situation in a more appropriate way: «I think
that I have learned [to use] CT and that has lifted me up from…..I was
quite down when I came in January dealing with my grief [being
infertile]. I feel that I have got a lot of help from it…at least up to
certain level». (P 3), and «Now, I can recognize them [NAT], but I have
to work a lot more with them…..» (P17). This work was especially
related to reevaluation of NAT, and finding alternative
interpretations. Through this process, several participants told that
their levels of anxiety, concern and even physical symptoms were eased:
«I used it when I was going to the follow-up… The difference is that
you in a way can try to…. You can in a way turn your thoughts…. That
you…Why are you so nervous and….to think a little bit more….That I try
to not worry about things I cannot do anything with» (P9).
«Insight and acceptance»
YACS expressed an increased insight and acceptance of their own
situation through the CT and psychoeducation. This was important in
order to process what they had gone through during the treatment: «Yes,
it must have helped while instead of trying to repress the whole
situation; I have rather tried to accept it and just…let it be» (P 11).
By being more consciousness of their own thought patterns, some YACS
discovered that they had “placed a lid over” their present situation,
and that CT and the increased insight made room for «open the lid» -
even if this was difficult: «Yes, I do not think the lid is as closed
anymore. However, it is difficult, because I cry a lot more than I did
before.” (P I7).
The YACS expressed that they were «normalized»
through the psychoeducation, using CT and sharing their own experiences
and challenges with others. This «normalization» also contributed to an
increased insight and acceptance of their present situation: «To be
able to process these thoughts and feelings while being here….That’s
when you have had the time thinking properly. The thoughts still are
there afterwards, but to be reassured that you are not alone thinking
like that…» (I 19). Through this process, several participants
expressed that they had regained some if their former security and
self-esteem, even if this had been a long and demanding process for
some: «I now manage to have the right focus and to avoid negative
thoughts... And gradually, yes, you just work steadily with the stuff
and reminding that you shall reach the goal, and then you manage…..Yes,
it is simply the self-esteem. Because, the negative and the bad stuff
in your head then in a way becomes weaker and weaker» (P 5).
«Handling a new life situation»
using CT, and being able to detect NAT and the increased insight and
acceptance, «handling a new life situation» emerged as the third
subtheme of how the YACS used CT. For most participants, the cancer
treatment had caused extensive changes in their present life-situation.
Especially, fatigue led to an extensive decrease in their capacity to
participate in different areas of life. To cope with and accept this
situation, handling the fatigue was crucial, where CT seemed to be an
important tool: «CT has helped me to realize that my fatigue is not
that un-normal» (P8). By understanding that it was notrealistic to have
the same levels of activity as before, several participants expressed
that CT was a useful technic to correct their own requirements and to
discover their own coping capabilities. «I have learned that I have to
listen to my body… and (sighs)… and not set too high standards for
myself, but it takes time…and THAT is something I have learned during
this rehabilitation….[ I have] LEARNED a lot of myself…..and got more
self-secure while I can SEE that I can cope….» (P 19).
the YACS, it was very important to be able to participate in
work/studies after a long sick leave. Several used CT to be realistic
and adjust their plans in accordance to their new life situation. Here,
follow-up and guidance seemed to be essential as well: «Yes, that
someone…. pointed out my direction, and that I in fact ought to scale
down my work and have a greater focus on myself and not that
conscience... That was the most important part» (P 12).
everyday life also included restarting «normal» activities as for
example their social life, but several participants experienced anxiety
and NAT in this process. Here, CT seemed to help them to reduce their
anxiety level and to handle different everyday situations: «I have not
as much anxiety.
Mmmm…I strived a lot with negative thoughts…or I didn’t know how to handle situations» (P 18).
up, the YACS found CT useful in several ways, where detecting NAT and
changes in thought patterns were especially important. Together with
the psychoeducation, and the discussions with the other YACS, it seems
that CT helped them to get insight and acceptance of their present
situation, and thus handle their new life-situation in a more
constructive way than before.
purpose of this study was to explore YACS’ experiences of CT in cancer
rehabilitation. The findings show that the participants experienced CT
as a useful tool, dependent of education, practicing and follow-up
before it could be internalized. Additionally, the YACS perceived that
CT was useful in their rehabilitation process, as it changed their
thought patterns, helped them to get insight and acceptance of their
present situation, and thus handle their new life-situation. This is
one of the first studies of a CT intervention targeting YACS, and in
our knowledge, the first study to explore the learning process of CT
and the perceived usefulness for YACS.
Using CT needs education, practicing and professional follow-up
first important message is that the YACS experienced and acknowledged
CT as an important tool in their rehabilitation process. This is in
line with Sansom-Daly et al’s (2012) assumption that CT may equip YACS
with coping skills to handle their survivorship issues, as well as
studies of older cancer survivors where CT has shown positive effects
of several survivorship challenges (Faller et al., 2013; Gielissen et
al., 2006; Osborn et al., 2006). This is also in line with the theory
of CT to promote self- help and being a tool that individuals can use
in challenging situations (A. Beck, 2005; J Beck, 2006).
found no other studies on how cancer survivors learn to use CT, and our
findings give important knowledge into this process. The YACS expressed
that the education and practice along with repetitions and follow-up
were crucial elements in internalizing and using CT. Especially, the
knowledge to understand the cognitive diamond and the connections
between thoughts, feelings, behavior and body was crucial. Supporting
this, J. Beck (2006) states that it is by understanding these
connections, that the individual is able to solve or reduce their
problems. Likewise, Luknes and McFarlane (2004) state that knowledge is
essential to cope with one’s own situation.
The results revealed
that education in itself was not sufficient to learn to use CT. The
YACS highlighted that practicing and using their own examples were
essential in the learning process, as this helped them to acknowledge
the relevance of CT into their situation. Accordingly, Osborn et al
(2006) and Sansom-Daley et al (2012) found that targeting specific
problems in such interventions more likely bring positive outcomes.
Using their own examples, the YACS also expressed that the five- column
scheme was a practical tool and important to understand how CT worked.
A clear goal in using the five column-scheme is to detect negative
thoughts and feelings and to clarify the connection between these
(Arendt & Rosenberg, 2012; J. Beck, 2006).
literature (Arendt & Rosenberg, 2012), the YACS got homework
between the sessions to stimulate the learning process. However,
several participants found both the writings and readings difficult.
This may be due to overload, based on their fatigue and subsequent
difficulties in concentrating as described in other studies (Campos,
Hassan, Riechelmann, & Del Giglio, 2011; Smith et al., 2013). The
readings also seemed to be too comprehensive and not enough tailored to
their needs. These results indicate that it is not easy to learn CT by
yourself, and that homework should be initiated gradually, not be too
comprehensive, and more directly tailored to the YACS’ situation.
participants also highlighted that learning CT was a process over time
in need of professional follow-up. This is in line with other studies
indicating that CT interventions have to involve more than 6 sessions
and last for more than 3 months to achieve positive outcomes (Faller et
al., 2013; Juvet et al., 2009; Osborn et al., 2006; Sansom-Daly et al.,
2012). However, the participants need for follow-up seemed to vary.
Some found that the follow-up in the program were sufficient, while
others called for more follow-up, - especially at the re-stays. The
YACS need for follow-up seemed to be connected to the degree and
privacy of their challenges. Some participants felt not comfortable
sharing their challenges within the group, but preferred to discuss
them with a therapist in privacy. In line with this, the literature
underlines the importance of addressing cancer survivors’ individual
needs as these are multidimensional and may vary greatly (Brearley et
al., 2011; Hall et al., 2012; Institute of Medicine, 2013). However,
the literature also illuminate that group based interventions are
important in providing positive effects on psychological health and
coping, as it promotes social support and positive impact of cancer
survivors knowledge about their illness (Austvoll-Dahlgren, Nøstberg,
Stensbekk, & Vist, 2011). These results highlights that the program
perhaps should have included a few more structured CT sessions on the
re-stays, but that the combination of the group sessions and offers of
individual follow-up seems to be important.
Even if the results
from the subthemes “training” and “follow-up” indicate some areas for
improvements, the results show that the majority “internalized” CT as
tool. However, the degree of internalization varied from using it “by
the book”, to internalized it in their ordinary way of thinking, while
other just bared CT in their minds. This indicates that the majority
got enough knowledge and practice to use CT as a tool in their
rehabilitation process. In line with these results, previous research
has shown that education and training in using coping tools are
important and useful elements in rehabilitation (Luknes &
McFarlane, 2004). These results are also in line with theory of CT,
stated to be a tool to increase the individuals’ understanding and
handling their own situation (Arendt & Rosenberg, 2012; A.Beck,
2005; J. Beck, 2006).
The perceived usefulness of CT
second important message from this study is that the YACS experienced
that CT had been useful in several ways in their rehabilitation process.
the participants expressed that learning to use CT had changed their
though patterns. Here, they expressed that the most important element
was to be aware of and to recognize their own negative thoughts (NAT).
This result is consistent with theory of CT, pointing out that to
discover and be conscious of negative thoughts as a vital element in
changing thought patterns and thereby cope with challenging situations
(A. Beck, 2005; J. Beck, 2006). This may be special important for YACS
in order to cope with survivorship, as they have limited
life-experiences and are fronting an unsecure future with potential
health risks (Buchmann & Kriesi, 2011; Institute of Medicine,
2013). By discovering their own NAT, the participants expressed CT was
a way to rethink and change NAT, and thereby be better able to handle
their present challenges. This result support theory of CT, stating
that maladaptive cognitions may contribute to maintenance of emotional
distress and behavioral problems, while problems can be reduced or
solved by consciously being aware of these mutual relationships (Arendt
& Rosenberg, 2012; A. Beck, 2005). The YACS especially experienced
that CT was useful related to fatigue, fertility problems, anxiety,
follow-ups and fear of recurrence. These are common problems reported
by YACS, all with potential seriously to jeopardize their health and
wellbeing (Hall et al., 2012; Institute of Medicine, 2013; Woodward et
al., 2011). In line with our results for YACS, previous research of
older cancer survivors have demonstrated to be efficient for similar
problems (Eichler et al., 2015; Faller et al., 2013; Gielissen et al.,
2006). Other researchers support this, for example Lebel et. al. (2014)
who found that group-based CT decreased cancer survivors’ fear of
recurrence. However, the YACS stated that CT did not change their “real
life” challenges as for example infertility or fear of recurrence, but
helped them to cope and come to turn with these in a better way. In
line with this, CT is about realistic and appropriate thinking, and not
a way of “positive thinking”, as unrealistic thinking may reduce the
individual’s ability to cope with the actual problem (Arendt &
Rosenberg, 2012; J. Beck, 2006). In contrast, CT aims to seek
alternative thoughts and solutions on perceived and actual challenges
(Arendt & Rosenberg, 2012).
Second, the YACS experienced
that the psychoeducation equipped them with an insight and acceptance
of their present situation. As for most CT intervention for cancer
survivors (Faller et al., 2013; Hersch et al., 2009; Juvet et al.,
2009), this study included education in both theory of CT and issues
specially relevant for YACS, focusing of unhelpful thoughts or
behaviours as well as coping skills training (Faller et al., 2013;
Hersch et al., 2009; Juvet et al., 2009; Osborn et al., 2006). The YACS
expressed that using CT in this process, “forced” them to reflect over
different issues. By being concious about the connections in the
cognitive model, made room for an insight and acceptance of their
present situation. The individual’s experiences of being able to affect
and change their own NAT and thereby cope with their own challenges, is
a basic goal in CT (A. Beck, 2005; J. Beck, 2006). In particular, a
normalization of their present situation, feelings and thoughts, seemed
to be important.
Since the challenges of cancer survivorship in
general are unknown, other studies highlights that discussions with
other survivor-peers are important in processing experiences and
gaining understanding, as well as legitimization and normalizing of
their situation (Hansen & Tiornhoj- Thomsen, 2007; Mattson,
Demshar, & Daly, 2013). However, as the YACS’ challanges could be
very sensitive, severe as well as quite realistic, this demonstrate the
importance of experienced and knowledgable professionals to facilitate
the session. In line with this, several researchers state that positive
effects of CT are dependent on skilled professionals who are able to
address cancer survivors multidimensional needs (Faller et al., 2013;
Hofmann et al., 2012; Osborn et al., 2006).
Third, the results
indicate that the YACS experienced that CT changed their thought
pattern that provided an increased insight and acceptance of their
present situation, and was thus an important tool in handling their new
life situation. Previous research has shown that cancer often represent
a serious life disruption, and that YACS are not well prepared to
survivorship, lacking information, follow-up and rehabilitation
interventions (Albritton et al., 2006; Hauken, Larsen, & Holsen,
2013; Institute of Medicine, 2013). YACS ask for tools to handle their
life situation (Albritton et al., 2006; Institute of Medicine, 2013),
and in line with research of older cancer survivors (Hofmann et al.,
2012; Juvet et al., 2009; Osborn et al., 2006), it seems that the YACS
experienced that CT represented such a tool. In particular, CT seemed
to help them to normalize their life, for example related to anxiety
and self-esteem, but also in making realistic judgements in how to
return to work and studies, based on their reduced capacity. Here,
several YACS experienced CT especially useful in their reality
orientation, and being able to cope with the discomfort they
experienced by having to adjust and change their own demands and goals.
CT builds upon that individuals structure their world through
cognitions based on previous conceptions and experiences stored in
their mind, explaining why new challenges can be difficult to handle.
By using CT, the goal is to understand and see these connections in
order to reduce the stress.(J. Beck, 2006).
Even if the results
gives new and important knowledge of the learning process of CT and how
the YACS used CT in multiple ways, this study has some limitations.
Because of its qualitative design, it includes a relatively small
sample from which findings cannot be generalized to the broader
population of young adult cancer survivors (Creswell, 2007 ).
Enrollment in this study was biased toward self-selection into the
rehabilitation program, and with an underrepresentation of men and the
youngest age group (18-23 years). A significant strength is, however,
the enrollment of a diverse population of informants across the
country, with varying backgrounds, life circumstances, and cancer
diagnoses, age at diagnosis, cancer treatment, and duration of
survivorship. Despite these limitations, the common themes were
consistent, suggesting that we captured a valid sample of the
experiences of using CT in a rehabilitation program directed to YACS
that may help direct both future research and clinical practice.
Implications clinical practice and recommendations for further research
results indicate that CT can be an important tool for YACS to handle
unmet needs and survivorship challenges. However, being able to use CT
seems to be dependent of education by professionals, where
understanding of the cognitive diamond, use of the five-column scheme,
relate CT to the YACS’ own examples, as well as follow-up over time
seem to be important factors in the learning process. Group-based
education, discussions and follow-up may provide normalization, but
based on the degree and sensitivity of the problems, individually
sessions may also be necessary.
Further research is necessary, both related to larger RCT studies examining the effects of using CT in
rehabilitation of YACS, as well as exploring the content of CT to optimize and develop CT intervention for YACS further.
study reveals important information about the unique experiences of how
YACS experience CT in a rehabilitation program, an issue that has not
been explored before. Most importantly, the findings indicate that the
YACS experienced CT as a useful tool in their rehabilitation process.
This was, however, dependent of adequate training where a combination
of education, practicing, connecting CT to YACS’s own challenges, as
well as professional follow-up where important factors before CT could
be internalized. Additionally, the YACS found CT useful in their
rehabilitation process, as it changed their thought patterns and helped
them to get insight and acceptance of their present life situation, as
well as handling their new life-situation. Even if these results cannot
be generalized, they suggest that CT could be an important tool for
YACS to handle important survivorship challenges, and further research
is highly warranted.
Acknowledgement, financial disclosure and conflict of interest
authors thank the study respondents for participants for resilient
participating and sharing their profoundly experiences. Thanks to Red
Cross Haugland Rehabilitation Centre (RCHRC) employees for running the
program so carefully according to the protocol; especially Kari Fismen
for coordinating the project. Profound thanks to PhD Torill Larsen and
PhD Ingrid Holsen at Hemil/University of Bergen, and MD/specialist in
rehabilitation medicine Eirik Fismen at RCHRC for supervision. Thanks
to Haugland International Research Centre for profoundly support. The
research was generously supported by grants from Eckbo's Lagat and The
Norwegian Cancer Society. The authors have no funding or conflicts of
interest to disclose. Both authors have participated in in the
planning, design, analysis, interpretation, writing, revising, and
approval of the manuscript.
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