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Cancer Investigation
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Cancer Survivorship and Identity among Long-Term
Survivors
Gary T. Deimling a; Karen F. Bowman a; Louis J. Wagner a
a
Cancer Survivor Research Program, Department of Sociology, Case Western
Reserve University, Cleveland, Ohio, USA

First Published on: 18 October 2007

To cite this Article: Deimling, Gary T., Bowman, Karen F. and Wagner, Louis J.
(2007) 'Cancer Survivorship and Identity among Long-Term Survivors', Cancer
Investigation, 25:8, 758 — 765
To link to this article: DOI: 10.1080/07357900600896323
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Cancer Investigation, 25:758–765, 2007

ISSN: 0735-7907 print / 1532-4192 online
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DOI: 10.1080/07357900600896323

ORIGINAL ARTICLE
Causation and Prevention

Cancer Survivorship and Identity among

Long-Term Survivors
Gary T. Deimling, Ph.D., Karen F. Bowman, Ph.D., and Louis J. Wagner, M.A.

Cancer Survivor Research Program, Department of Sociology, Case Western Reserve University, Cleveland, Ohio, USA

ABSTRACT
This article examines the concept of survivorship and the adoption of the “survivor identity”
by those who have been treated for cancer. First, we review recent and growing theoretical
and empirical literatures on cancer and identity and identity transformation. With that review as
background, we present our own research findings from 2 separate studies on survivorship and
identity. Our data suggest that most older adults who have survived cancer for at least 5 years,
identify as cancer survivors and/or as ex-patients rather than as victims or patients. Most also
view being a survivor as an important part of who they are, do not see themselves as less whole,
and are not overly concerned about how others view them. To the degree that a survivor orien-
tation is associated with better mental health outcomes and encourages health promotion and
appropriate symptom monitoring, it can reinforce the effects of the quality medical care provided
by clinical staff. The support of clinicians encouraging this orientation, where it is appropriate,
may further enhance the quality of life of individuals who living with a history of cancer.

INTRODUCTION
This article examines the concept of survivorship and the
adoption of the “survivor identity” by those who have been
treated for cancer. First, we review recent and growing theo-
retical and empirical literatures on cancer and identity. With
that review as background, we present our own research find-
ings from 2 separate studies. The first is a previously published
study on identity and survivorship and the second is an ongoing
study of the quality of life of older adult, long-term cancer sur-
vivors. While both studies provide extensive quantitative data on
aspects of identity and related constructs, the ongoing study also
provides narrative information from survivors on the factors that
engendered identification as a “survivor.” Together the data from
both of these studies hopefully shed light on how identification
as a cancer survivor is related to positive aspects of identity, such
Keywords: Cancer survivorship, Identity, Long-term survivorship
This research was funded in part by grants from the National
Cancer Institute (2R01-CA-78975 and R03-CA-091577).
Correspondence to:
Gary T. Deimling, Ph.D.
Department of Sociology
Case Western Reserve University
10900 Euclid Ave.
Cleveland, OH 44106-7124.
as self-esteem and mastery and how they are related to negative
outcomes such as stigma and psychological distress. These find-
ings are discussed within the context of identity theory, which
provides a framework for understanding the process of becom-
ing a cancer survivor and its implications for the quality of life
of those diagnosed and treated for this disease.
The emergence of the concept of
“survivorship”
The concept of “survivorship” is a relatively new orienta-
tion for those individuals who have had cancer and their family
members. It is also a relatively new focus for clinicians who treat
these individuals and the scientists who study them. In the past,
the conceptualization and language of survivorship may have
seemed to be inappropriate when cancer survival rates were poor
and the “ethos” of cancer was that it is a “death sentence.” With
earlier diagnosis and better treatment, which have culminated in
improved survival rates for most cancers, a focus on survivor-
ship has become a more realistic orientation. However, because
of the relative recency of these changes, and the fact that social
norms, attitudes and beliefs often lag behind scientific and med-
ical advances, the shift toward a survivorship orientation is only
now beginning to predominate.
An important part of this shift in orientation has been a trans-
formation of the language and labels used to identify those who

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have had cancer. Terms such as “cancer victim” or “cancer pa-
tient,” which were the traditional labels used to denote some-
one with this diagnosis, have been all but replaced by the term
“cancer survivor.” This label is now applied not only to those
who have lived for an extended period of time after treatment,
but also includes those newly diagnosed with cancer, those who
are in treatment, and those who have completed treatment and
are in remission. This change in language and orientation has
been adopted and promoted by organizations such as the Ameri-
can Cancer Society (ACS) and the National Coalition of Cancer
Survivors (NCCS). The National Cancer Institute’s (NCI) Office
of Cancer Survivorship defines a survivor as anyone who has
survived even one day after diagnosis (1). A somewhat more
restrictive definition still found in the literature classifies sur-
vivors as “those apparently free of cancer after treatment” (2).
Taken together, these definitions of survivorship encompass a
range of individuals beginning with those recently diagnosed to
those experiencing recurrence or another cancer.
Long-term survivorship
Most research in psychooncology has, and continues to fo-
cus on the immediate and short-term effects of cancer, primarily
at diagnosis, during treatment, or during the first years after
treatment (3). Therefore, much of what we know about the psy-
chosocial impact of cancer is from research on the earlier stages
of survival. Bloom indicates that one reason for the relatively lit-
tle attention to the quality of life of long-term cancer survivors
is due to recent improvements in survival rates (4). However,
research does document that cancer survivors continue to ex-
perience health problems, psychological distress, and social life
disruption even decades after diagnosis and initial treatment (4).
As a result, there has been a growing interest in long-term sur-
vivors as they age.
It has been suggested that survivorship can be divided into
three temporal stages: acute, which includes treatment and the
first year afterwards; extended, which includes the period from
the first through the third years after treatment when recurrence
is most likely; and permanent, which extends from the third year
throughout the remainder of life (4). The Office of Cancer Sur-
vivorship at NCI, which was established in the late 1990s (5),
has defined long-term survivorship as beginning 5 years after
diagnosis. The NCI’s use of the 5-year mark is consistent with
the way survival statistics traditionally have been reported as
“5-year survival” rates. It also is consistent with the view com-
monly held by the general public that those who have survived
for 5 years have a relatively high probability of permanent sur-
vival or “cure.”
Of course, professionals working in oncology, and most pa-
tients, know that no specific time frame is indicative of a “cure”
from cancer or a guarantee of “permanent” survival, as there
is considerable variation in the period where recurrence likely
is dependent on cancer type and tumor characteristics. Further,
since many forms of cancer are chronic, yet-highly-survivable,
the definition of successful treatment has shifted toward maxi-
mizing the quality of life of all individuals who have been diag-
nosed with cancer for as long as they are alive.
Survivorship and Identity
Most of those who have had cancer also are aware that long-
term survival of one type of cancer does not ensure a future
free from cancer. They recognize that after one cancer has been
“survived” or “cured,” there is the possibility, if not the increased
probability, of another type of cancer. In our research, 10 per-
cent of the long-term survivors had survived a prior, different
cancer, and 17 percent had another type of cancer after being in
remission for the cancer that was the focus of our study. Other
research has found that 6–11 percent of all cancers are second
cancers (5). Thus, even with the optimism generated by suc-
cessful treatment and extended survival, and the corresponding
focus on survivorship, the reality is that a future free form cancer
can never be assumed.
Linking survivorship and identity
With the increasing number of cancer survivors in the general
population and the media focus on “celebrity” survivors, a focus
has emerged on the meaning of cancer and cancer survival. Little
and colleagues (2) describe how survivorship and identity are
both part of this new “discourse” on cancer as an illness. Once
“shrouded in social silence,” (p. 170) stories of cancer as an ill-
ness now have a place in our culture. They suggest that those
diagnosed with cancer can now “expect some degree of accep-
tance and understanding” and “that surviving cancer produces
changes in personal identity” (p. 170). The link between survival
and identity is further elaborated upon by Zebrack (6), who as-
serts that the cancer experience may “result in the integration of a
new, and perhaps permanent identity” (p. 238) for the individual.
The general public’s adoption of the orientation and language
of survivorship has implications for the way survivors view
themselves. Social theorist Charles Horton Cooley (7) pointed
to the fact that the individual’s sense of self is formed in the
“looking glass” that society provides. His colleague, George
Herbert Mead (8), further specified how this occurs with the in-
dividual amalgamating those reflected views of society through
the formation of the “generalized other.” As society in general
has shifted its view of cancer from that of a death sentence to a
survivable, life-threatening illness, individuals diagnosed with
this illness are provided with a new way of viewing themselves
and their future.
Identity theory has emerged as a useful framework in under-
standing the process of adopting illness-related identities and
the implications that these identities have for the self (9). The
focus of identity theory, as it was originally developed, is on sta-
bility and change in identity over the life course and the relative
importance that individuals attach to specific identities (10–13).
Significant life-event stressors, such as a life-threatening illness,
may result in changes in the relative importance of specific iden-
tities, referred to as the identity salience hierarchy. Changes in
the salience of specific identities, in turn, can alter aspects of
one’s self concept. Specific identities that have been central to
the individual’s sense of who they are (e.g., career, professional,
or family identities) may diminish salience in the face of these
illness stressors and may be replaced by illness-related identities.
Cancer is one form of life-threatening illness that has the
potential to alter the salience of specific identities, and replace
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primary identities with those related to the illness. Zebrack (6)
quotes a cancer survivor who says, “There was cancer on the
one hand and everything else in my life on the other . . . the fact
that I was a patient with cancer . . . outweighed the rest of my
life . . . it’s never not there” (p. 238). Giles and Johnston (14),
recognizing the potential of cancer to impact core identities,
indicate that the loss of identity experienced by cancer survivors
may be similar to that of dementia patients.
One way that cancer, especially sex-specific cancers such as
prostate and breast cancer, can affect core elements of the self is
through gender identity. For men, prostate cancer, “challenges
the way they experience their masculinity” (15). Thorne and
Murray (16) point out that women diagnosed with breast cancer
are presented with, “a confusing array of ideologies,” and that the
resulting impact on the gender-related social construction of this
disease may impact how they make decisions about treatment
options.
Identity theory posits that another way that an individual’s
sense of self is altered by major life events such as cancer is
through impaired role performance. Medical sociologist Arthur
Frank’s (17) autobiographical account of surviving both a heart
attack and cancer discusses how illness can damage one’s sense
of self through the strain placed on important roles and the as-
sociated self blame. The disabling effects of cancer treatment,
if not the disease itself, can have a major impact on how well an
individual performs roles that are central to his or her identity,
such as family roles (e.g., spousal intimacy, child/parent care) or
work performance. Thus, one of the major challenges faced by
those diagnosed with cancer is, “the work of living with cancer”
(18) (283).
The identity-relevant aspects of cancer discussed above are
those that pose significant challenges for the individual with
this illness. While cancer can be viewed as an event that assaults
prior perceptions of self and may impair role performance, it al-
ternatively can be viewed as an opportunity for personal growth
and improved well being (19) and can motivate reintegration of
the self. Terms such as self-transformation (19) and reformula-
tion of identity (20) also have been used to describe the cancer
experience. This process is exemplified by the comments of the
survivor Zebrack (6) quoted above who goes on to say, “for a
long time now, maybe four or five years, cancer has felt like it’s
been part of a quilt . . . one of those patches is cancer” (p. 238).
This comment suggests with the passage of time, the cancer ex-
perience can be integrated into larger life experiences. At this
point, illness and patient-related identities may yield to feelings
of kinship with those who have survived cancer and have since
gone on to lead relatively normal and healthy lives.
Adopting the survivor identity
Adoption of the survivor identity may be an important step in
the process of identity transformation or reconstruction. It can
provide alternative identities to replace those defined by illness
or those threatened or lost to illness. As such, it has the potential
for a number of positive consequences. Research has shown that
cancer survivors who make “a positive transformation” have
higher self-esteem and well-being than those who have not had
760 G. T. Deimling et al.
cancer (19). Defining oneself as a survivor, either in the limited
context of cancer or more broadly, may be a positive orientation
that is transferable to other illness or life event stressors. The
survivor identity may contribute to successful aging through
the development of coping strategies that can be used to adapt to
other normative stressors of aging, or help to place other stressors
in perspective.
Another way that identity theory is relevant to cancer sur-
vivorship is that it suggests that highly salient identities demand
a corresponding commitment to specific behaviors related to that
identity. For example, the adoption of the survivor identity may
foster pragmatic health beliefs and behaviors that can contribute
to healthy lifestyles and overall wellness (21). These may in-
clude important health protective behaviors such as compliance
with medical care recommendations, symptom monitoring, and
general health maintenance.
The survivor identity also may come into play in the area of
maintenance of valued roles and activities. During active treat-
ment, cancer patients often experience a loss of, or strain in
important roles and activities, including work, family, hobbies,
and recreation. For long-term survivors, the ability to return to
effective and enjoyable participation in these valued roles and
activities may be identity enhancing and represent an important
aspect of the survivor’s quality of life. This may be especially
important for older adults who have faced other role losses that
are traditionally associated with aging.
Finally, another area in which the adoption of the survivor
identity may have important implications is the psychological
distress that survivors experience. Specific forms of distress that
may be linked to identity are cancer-related health worries, anx-
iety, and depression. Research has shown the persistence and
importance of cancer-related worries (22) and an empirical link
between cancer-related health worries and anxiety and depres-
sion (23). Viewing oneself as a survivor may buffer the individual
from a preoccupation with cancer-related worries and, thus, play
a role in reducing anxiety and depression.
From the above literature, it is clear that there is a growing
interest in expanding conceptualizations of the ways that cancer
affects important aspects of identity and how these, in turn, may
affect the quality of life of survivors. While empirical investiga-
tion is just beginning to emerge in this area, it is clearly a fruitful
area for future research.
Our research on survivorship
With the above as background, the remainder of this article re-
ports research results on identity-relevant aspects of survivorship
derived from 2 of our studies. The first was a National Institute
on Aging (NIA) funded Pepper Center pilot study conducted
in 1994. It had a relatively small (N = 50), community-based
convenience sample of older adults. Respondents experienced a
range of cancers and had survived for a period of from 1 to 40
years at the time of interview, with 60 percent having survived
less than 5 years (24). This will be referred to as our “early
study” in the discussion and tables that follow.
The second is a larger (N = 321), ongoing longitudinal study
funded by the National Cancer Institute that will ultimately
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Table 1. Personal characteristics Table 2. Cancer/treatment characteristics

Early studya Ongoing studyb Early studya Ongoing studyb

N % N % N % N %
Age Age at diagnosis
<60 8 16.0 5 1.6 16–20 5 10.0 31 9.7
60–64 6 12.0 45 14.0 21+ 7 14.0 19 5.9
65–74 16 32.0 145 45.2 Unknown 0 0.0 3 0.9
75+ 20 40.0 126 39.3 Cancer stage at diagnosis
Gender Type of cancer
Female 43 86.0 190 59.2 In situ N/A N/A 21 6.5
Male 7 14.0 131 40.8 Breast 18 36.0 133 41.4
Race Local N/A N/A 182 56.7
Black/African-American 15 30.0 121 37.7 Colorectal 9 18.0 96 29.9
White/Caucasian 34 68.0 200 62.3 Regional N/A N/A 89 27.7
Marital status Prostate 0 0.0 92 28.7
Married 13 26.0 179 55.8 Distal N/A N/A 6 1.9
Widowed 17 34.0 83 25.8 Other 23 46.0 0 0.0
Divorced 11 22.0 34 10.6 Not available N/A N/A 23 7.2
Separated 2 4.0 2 0.6 Symptoms attributed to current
Never married 7 14.0 22 6.9 Cancer or treatment
Unknown 0 0.0 1 0.3 <50 14 28.0 33 10.3
Education 51–60 11 22.0 104 32.4
0–11 years N/A N/A 59 18.4 0 N/A N/A 200 62.3
12 years N/A N/A 74 23.1 61–70 10 20.0 126 39.3
13–16 years N/A N/A 124 38.6 1 N/A N/A 58 18.1
17+ years N/A N/A 62 19.3 71–80 14 28.0 48 15.0
Unknown N/A N/A 2 0.6 2 N/A N/A 33 10.3
80+ 1 2.0 7 2.2
a Data collected in 1994 from NIA Claude D. Pepper Center Grant. 3 N/A N/A 30 9.3
b Data collected from 1998 to present from NIH 2R01-CA-78975. Unknown 0 0.0 3 0.9
Total number of treatment types
Years since diagnosis
0 N/A N/A 2 0.6
collect 6 waves of data over a 10-year period (1998–2008). The 0–5 22 44.0 53 16.5
sample was randomly selected from the tumor registry at the 1 N/A N/A 168 52.4
Ireland Cancer Center (ICC) at University Hospitals Health Sys- 6–10 11 22.0 144 44.9
2 N/A N/A 100 31.2
tem (UHHS) in Cleveland, Ohio (23, 25). It includes survivors 11–15 5 10.0 71 22.1
of breast, colorectal, or prostate cancer who were at least 60 3 N/A N/A 42 13.1
years of age at the time of the interview. In contrast to our early 4 N/A N/A 4 1.2
study, respondents in the longitudinal study had been diagnosed Unknown N/A N/A 5 1.5
a minimum of 5 years at study enrollment (see Tables 1 and 2 Treatment types
Surgery only 24 46.0 141 43.9
for descriptive information on the samples). Surgery and radiation only 8 16.0 39 12.1
Cross-sectional data are reported here from the study’s first Surgery and chemotherapy only 7 14.0 31 9.7
wave of interviews. While that data is primarily quantitative Surgery, chemotherapy, 6 12.0 16 5.0
in nature, we also have narrative information volunteered by and radiation
our respondents, which we present to provide context to the Surgery, hormone, and other N/A N/A 45 14.0
Other combined therapies 5 10.0 49 14.0
quantitative data. The data reported from this later study will be
referred to as our “ongoing study.” a Data collected in 1994 from NIA Claude D. Pepper Center Grant.
b Data collected from 1998 to present from NIH 2R01-CA-78975.
Identification as a survivor
One of the first questions of interest in our research was the survivors. Sixty percent of those in our early study indicated
degree that individuals viewed themselves as cancer survivors that they considered themselves to be an ex-patient, compared
(Figure 1). Given the emergence of the language and orientation to 42 percent in our ongoing study. Twenty-two percent of the
of survivorship, this was our starting point. In both of our study’s respondents in our early study felt that they were still a patient,
we asked, “At this point in time, do you consider yourself to be: a compared to only 13 percent in the ongoing study, reflecting the
cancer patient, an ex-cancer patient, a cancer victim or a cancer longer average time since diagnosis. Finally, about 30 percent
survivor?” Respondents could endorse any, all or none of these indicated that they consider themselves to be a cancer victim
choices. In our early study, 90 percent of respondents identified in our early study, compare to only 13 percent in our ongoing
as a survivor. This compares closely to the 86 percent of those research. This may reflect changes that have taken place in the
in our ongoing study who considered themselves to be cancer portrayal of cancer during the period between the 2 studies.

Survivorship and Identity 761

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Figure 1. Survivorship identity.
Because respondents could endorse any of the possible iden-
tity labels, the categories were not mutually exclusive. In the
early study 26 percent identified themselves as both victim and
survivor. In our ongoing study this was reduced to 11 percent, in
part because fewer respondents endorsed the victim label. How-
ever, the fact that both identities were endorsed suggests the
ambivalence and uncertainty that this disease creates in some
individuals.
Those respondents who identified as survivors were asked
when they adopted this identity. In our early study 60 percent
indicated that they adopted this orientation by the time treatment
had ended, compared with 40 percent in the ongoing study. The
remainder adopted this identity later in the illness experience.
In our early study 10 percent adopted this identity during the
period 2–4 years after treatment and an additional 14 percent
at or after the 5-year anniversary. In our ongoing study some
respondents adopted the survivor orientation as early as from
6 months to one year after treatment (4 percent and 8 percent,
respectively). In the ongoing study the importance of the 5-year
anniversary is clear, with one-fifth of respondents indicating that
this was the time period when they felt that they were a survivor.
An additional 4.6 percent adopted the identity at the 10-year
anniversary. Overall, it appears that most individuals adopted
the survivor identity relatively early in the illness experience,
and in most cases before the 5-year anniversary.
Factors that encourage identification
as a survivor
In our ongoing research, we recorded the responses of a num-
ber of respondents who volunteered information on what trig-
gered their feelings of being a survivor. This narrative informa-
tion serves to illuminate the quantitative data that is the bulk of
the interview content.
One pattern of responses uncovered in the narrative data was
the role that a reduction or cessation of cancer symptoms or
762 G. T. Deimling et al.
treatment effects played in identifying as a survivor. Survivors
indicated they felt like a survivor, “When I didn’t have the symp-
toms any more,” or, “I’m not sick or disabled . . . some people
[with cancer] can’t do anything, I’m not like that.”
For others, adoption of the survivor identity was linked to
their generally optimistic personal orientation. One survivor
commented, “I’ve been a survivor all my life, some day that
will fail me . . . the nurse said you’ll make it because of your
attitude.” Another said, “When I got home from the hospital
I thought, ‘why me,’ and then I thought, ‘why not me,’ and I
haven’t thought about it [survival] since.” For some, their opti-
mism was related to their religious faith. As several survivors
said, “I knew God had brought me through this . . . God allowed
me to [survive]” or, “I asked the Lord to help me deal with this.”
For still others, it was clear that their survivor orientation
was associated with results of tests or treatment success. One
survivor noted, “When they decided to give me radiation . . . it
was like I had a tooth ache and they pulled it out . . . they were so
happy.” Others said, “The moment they told me they got it all,”
or, “That it hadn’t spread . . . hadn’t pierced my intestine.” Still
another noted, that he felt he was a survivor when he “awoke
from surgery and was alive.”
It is important to note that clinical staff played a role in gen-
erating a survivor orientation for some, either by providing spe-
cific information or by instilling confidence in their abilities.
Survivors made comments such as, “I’m sure my doctors did a
good job,” and, “My physician was very optimistic, [and I] felt
the doctor was committed,” or, “[I had] very good doctors.”
Social scientists recognize that the process of participating
in a research study has an effect on a respondent’s outlook and
we have had a sense that this occurred in some cases. About 80
percent of survivors indicated that our interview was the first
time that some one asked them about their illness experience, or
was willing to listen at length and let them “tell their story.” Frank
(26) suggests that a chance to formulate and express an illness
narrative is essential to healing for those who have endured a
serious illness.
It is important to note that we were careful throughout the
research process not to refer to our respondents as “survivors”
when we talked with them during our screening calls, in the
literature we provided them, or during the interview itself. How-
ever, it was inevitable that being asked to participate in this type
of project would affect how many thought about their cancer ex-
perience. One respondent indicated that she began to identify as
a survivor “When they asked me to take part in this [research].”
Importance of survivorship
As noted in the introduction, identity theory suggests that in-
dividuals place identities in a hierarchy that reflects the salience
of each identity they adopt. In our research we wanted to see
how important identifying as a survivor was to participants (see
Figure 2). To assess this, respondents in both the early and ongo-
ing studies were asked the extent to which they agreed with the
statement, “Being a cancer survivor is an important part of who I
am.” Approximately four-fifths of respondents in the early study
and two-thirds in the ongoing study indicated that they agreed
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Figure 2. Cancer impact on identity.
or strongly agreed with the statement. This would appear to in-
dicate that this identity was important for how they have come
to view themselves since their diagnosis.
How survivors feel that they are viewed
by others
In our ongoing study we asked a number of questions about
how survivors perceived that they are viewed by others. Given
the common perceptions that cancer is a stigmatizing illness,
and that stigma is linked to identity and self, several questions
that reflect stigma were asked. Only a relatively small propor-
tion of survivors, about one in 10, agreed with the statements,
“I sometimes feel I am not a whole person,” or that, “I am con-
cerned how others view me.” This suggests that most older-adult,
long-term survivors do not feel stigmatized by their cancer his-
tory and only a few are concerned about the perceptions of others.
However, when we asked about their propensity to disclose their
cancer history to friends, nearly 6 out of 10 indicated that they
had not told others they had had cancer.
Factors associated with survivor identification
In both of our studies, we have correlational data that indicate
which factors are associated with adoption of the survivor iden-
tity, the timing of that adoption as well as other identity issues
and aspects of psychological distress. The complete correlation
matrix from the earlier study is available in Deimling, Kahana,
and Schumacher (24), and the correlation matrix for the ongo-
ing study is available upon request. A number of the statistically
significant associations are reported below with Pearson’s r co-
efficients and related p-values provided. Given the statistical
power that our sample size provides, some of the coefficients
that achieve statistically significance are quite small. This needs
to be kept in mind in interpreting their substantive importance.
With regard to measurement, the survivor identity measures
presented here were created by us specifically for our early study
and also have been used in the ongoing study. The measures that
are examined as correlates of these identity-related factors, for
Survivorship and Identity
the most part, are well established and validated scales reported
elsewhere in the psychooncology literature as well as our prior
publications (23–25, 27). In the early study (24) coping was
measured adapted from Carver et al. (28), which has 3 dimen-
sions: affective, instrumental, and escapist coping. Mastery was
measured using Pearlin’s scale that taps global levels of personal
efficacy (29). The Rosenberg measure was used in both studies
to assess self-esteem (30). Two measures of psychological dis-
tress were used in the early study, anxiety and depression. These
were derived from the SCL-90 (31).
In the ongoing study trait optimism was measured using the
Life Orientation Test (LOT) (32). The Profile of Mood States
(POMS) (33) was used to operationalize 2 dimensions of psy-
chological distress, anxiety and hostility. Depression was mea-
sured using the CES-D (34).
Turning first to our early study, the correlational data showed
that those who identified as a survivor were more likely to cope
with the illness using instrumental strategies (r = .26, p < .05).
This suggests a link between identifying as a survivor and taking
an active approach to dealing with this illness. That research also
found that the timing of adopting the survivor identity was as-
sociated with the level of distress reported. Those who adopted
the survivor identity relatively early in the course of the ill-
ness demonstrated significantly lower levels of anxiety (r = .41,
p < .01) and depression (r = .47, p < .01) at the time of our in-
terview. Early adoption of the survivor identity was also signif-
icantly associated with higher levels of self-esteem (r = −.30,
p < .01).
Our ongoing study has taken a more comprehensive look at
the factors correlated with survivorship and distress outcomes.
We found that African Americans were more likely to report con-
cerns of not being a whole person (r = .15, p < .01) and that they
were more concerned with how others view them since having
cancer when compared to Whites (r = .27, p < .01). However,
these concerns apparently do not translate into lower levels of
self-esteem than Whites (r = −.03, NS).
Optimism, a trait-like dispositional characteristic (28), dis-
plays the most consistent relationship with the identity-related
factors. Respondents with higher levels of optimism were less
likely to view themselves as a victim (r = −.17, p < .01), less
likely to view themselves as a patient (r = −.13, p < .05), and
more likely to view themselves as an ex-patient (r = .14, p < .05).
This indicates that optimism can be linked empirically to sur-
vivors placing the cancer experience in perspective and mov-
ing on. More optimistic survivors also were less likely to view
themselves as “not a whole person” (r = −.19, p < .01) and less
likely to be concerned about “how others view them” (r = −.18,
p < .01). While the magnitude of these associations is quite mod-
est, taken together they suggest that an individual’s response to
cancer is at least partly linked to his/her personality or trait-like
characteristics.
A number of cancer/treatment characteristics were associated
with identity-related factors. First, compared to those who had
breast or colorectal cancer, those who had prostate cancer were
less likely to identify as survivors (r = −.22, p < .01). Having
more types of treatment was weakly associated with adopting the
763
Downloaded By: [Canadian Research Knowledge Network] At: 02:00 12 May 2008
survivor identity (r = .13, p < .05). Having had chemotherapy
was weakly related to adopting the survivor identity (r = .11,
p < .05) while having radiation therapy was weakly linked to
not adopting the survivor identity (r = −.13, p < .05).
Symptoms experienced by respondents, both those that oc-
curred during treatment and current symptoms attributed to
cancer or its treatment were correlated with a number of the
identity-related factors. First, respondents who experienced a
greater number of symptoms during treatment were more likely
to identify with being a cancer patient (r = .25, p = <.01). Sec-
ond, those who currently had more cancer-related symptoms
were less likely to identify as survivors (r = −.20, p < .01), more
likely to identify as patients (r = .25, p < .01), and more likely
to feel that they are not a “whole person” (r = .14, p < .05).
From this, it is clear that ongoing cancer-linked symptoms have
a continuing impact on survivors’ sense of self.
The associations found among the identity-related character-
istics provide insight into the ways different aspects of identity
are interrelated, and how more general measures of identity,
such as self-esteem, are correlated with cancer specific identity-
related outcomes. First, respondents with lower levels of self-
esteem were more likely to report feeling that they are not a
“whole person” (r = −.28, p < .01), and being concerned with
how others view them (r = −.19, p < .01). Second, survivors
who continue to identify as patients were less likely to feel they
are not a “whole person” (r = .17, p < .01) and more likely to
identify as a survivor later in the illness experience (r = .17,
p < .01). Those who took longer to adopt the survivor identity
were more likely to view themselves as “not a whole person”
(r = .20, p < .01).
There also are several statistically significant associations
between identity factors and distress. Lower self-esteem was a
relatively strong correlate of higher levels of anxiety (r = −.28,
p < .01), hostility (r = −.15, p < .05), and depression (r = −.39,
p < .01). Further, those who identified as cancer victims demon-
strated higher levels of hostility (r = −.13, p < .05) and those
who continued to identify themselves as patients reported higher
levels of hostility (r = .17, p < .01) and depression (r = .14,
p < .05).
DISCUSSION AND CLINICAL
IMPLICATIONS
As Bloom (4) notes, many, if not most, long-term survivors of
cancer not only survive, but also thrive. Our previous research
provides additional support for this, demonstrating that most
long-term survivors do not report high levels of physical impair-
ment or pathological levels of psychological distress (23, 25).
At the same time, it is important to note that our prior research
shows that a relatively small proportion of survivors do report
serious health and psychosocial problems that are linked either
to the cancer itself or the effects of treatment. Their current
health not withstanding, most older adults who have survived
cancer for at least 5 years, identify as cancer survivors and/or
764 G. T. Deimling et al.
as ex-patients rather than as victims or patients. Most also view
being a survivor as an important part of who they are, do not see
themselves as less whole, and are not overly concerned about
how others view them. In other analysis of our data (not shown),
even those who have had a recurrence or a second cancer share
these positive endorsements of survivorship.
This fact that most individuals in our research voice a strong
survivorship orientation may be, at least in part, a result of the
positive and optimistic orientation portrayed in the popular me-
dia as a result of the work of organizations such as the National
Coalition of Cancer Survivorship, The Lance Armstrong Foun-
dation, the American Cancer Society, and the Office of Cancer
Survivorship at NCI. Comments made by our respondents sug-
gest that the media has played a role in disseminating this
orientation.
It is clear from our research and that of others, that how an
individual copes with cancer is linked, at least in part, to more
trait-like dispositions such as optimism and self-esteem (27, 34).
To the degree that these factors are enduring traits, they may be
less amenable to clinical intervention. However, when the prog-
nosis an individual receives suggests that survival is a realistic
outcome, clinical staff can work with cancer patients undergoing
treatment and those receiving follow-up testing to encourage a
survivorship orientation. The survivorship orientation may help
to promote healthy lifestyles that may, in turn reduce the odds of
recurrence or the occurrence of other cancers. The survivorship
orientation also may encourage symptom monitoring that may
enhance early detection and diagnosis of either a recurrence or
new cancer.
This article largely has focused on the positive aspects of
survivorship. However, it is important to recognize that there
are several potential problems that may be associated with an
overemphasis on survivorship. Individuals with advanced can-
cers or those whose cure or long-term survival is unlikely may
become alienated by the display of the survival orientation by
other patients or clinical staff. Even among those who are likely
to survive cancer, the expectations created by the survivorship
orientation risks creating a “blaming the victim” situation where
individuals feel overly responsible for their own survival. This
may become especially problematic for individuals who experi-
ence a recurrence, which reduces the probability of permanent
survivorship. Some individuals may then feel that treatment fail-
ure, if it occurs, is somehow “their fault.”
These exceptions aside, our research and that of others we
reviewed suggests that the emerging discourse of survivorship
has already had an impact on the way that those diagnosed
with and treated for cancer view themselves and their future. To
the degree that a survivor orientation is associated with better
mental health outcomes and encourages health promotion and
appropriate symptom monitoring, it can reinforce the effects of
the quality medical care provided by clinical staff. The support
of clinicians encouraging this orientation, where it is appropri-
ate, may further enhance the quality of life of individuals who
living with a history of cancer.
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Blackwell Science, LtdOxford, UKEJCCEuropean Journal of Cancer Care0961-5423Blackwell Publishing Ltd, 2004133227237Original ArticleReflections on serious illness as spiritual journeyMCGRATH

Original article

Reflections on serious illness as spiritual journey by

survivors of haematological malignancies
P. MCGRATH, bsoc, wk, ma, phd, research fellow, Centre for Social Science Research, School of Nursing and
Health, Central Queensland University, Rockhampton, Australia

MCGRATH P. (2004) European Journal of Cancer Care 13, 227–237

Reflections on serious illness as spiritual journey by survivors of haematological malignancies

Although still in its infancy, research on spirituality is attracting increasing attention in health care. There
are ongoing calls within the literature for research directed specifically toward clarifying what people mean
by the word ‘spiritual’ and how they express this dimension in their lives. The findings presented in this
article respond to that call by presenting findings from a recent qualitative study on meaning-making in
relation to serious illness conducted with survivors of haematological malignancies. The findings indicate
that the language of a secular spiritual journey, rather than a conventional religious or theological conceptual
framework, was used for meaning-making by the survivors interviewed. Such results affirm the recent
definitional move away from conflating religion with spirituality, while pointing to the richness, complexity,
and contradiction that individuals bring to their meaning-making. The findings provide important insights
on the interpretation of spirituality for a group of individuals surviving the confrontation with death caused
by a life-threatening illness.

Keywords: spirituality, psychosocial, death and dying, haematology, survivors.

Research on spirituality is still marginalized in a health conceptual clarity has been sought on the definition of the
care system that is informed primarily by the positivist, two terms (Elkins et al. 1988; Zinnbauer et al. 1997).
biomedical paradigm (McGrath 1999). However, over the Although it is extensively acknowledged that spirituality
last few decades there has been an increasing interest in is a broader notion that embraces the individual’s quest
the topic among health professionals, particularly those for existential meaning, which is not necessarily inclusive
who specialize in trauma, grief and death and dying of religion, the definition of the term is still in flux (Hod-
(Mahoney & Graci 1999). The following discussion will der & Turley 1989; Mahoney & Graci 1999; Emblen 1992;
make a contribution to furthering the upsurge of interest Cawley 1997). Metaphorically speaking, this is an area of
in research on spirituality by presenting findings from a research where the cart has always been placed before the
recent qualitative study on meaning-making in relation to horse, because of the inherent contradiction of requiring
serious illness conducted with survivors of haematologi- definitional clarity for methodological rigour prior to an
cal malignancies. understanding of notion of spirituality itself. Conse-
Historically the notion of spirituality has been conflated quently, there are ongoing calls within the literature for
with religion and it has only been in recent years that research directed specifically toward clarifying what peo-
ple mean by the word ‘spiritual’ and how they express this
dimension in their lives (Mahoney & Graci 1999;
Correspondence address: Pam McGrath, Research Fellow, Centre for
Social Science Research, School of Nursing and Health, Central McGrath 2001a). The findings presented in this article
Queensland University, Rockhampton, Qld 4702, Australia (e-mail: respond to that call and indicate that the language of a
pam_mcgrath@bigpond.com).
secular spiritual journey, rather than a conventional reli-
Accepted 28 August 2003 gious or theological conceptual framework, was used for
European Journal of Cancer Care, 2004, 13, 227–237 meaning-making by the survivors interviewed. The find-

© 2004 Blackwell Publishing Ltd

MCGRATH
ings affirm the recent definitional move away from con-
flating religion with spirituality, while pointing to the
richness, complexity, and contradiction that individuals
bring to their meaning-making. The findings provide
important insights on the interpretation of spirituality for
a group of individuals surviving the confrontation with
death caused by a life-threatening illness.
THE RE SE A RC H
The research project represents the first time that substan-
tial funds have been provided by a major Australian cancer
research organization for work on spirituality. The study,
funded by the Queensland Cancer Fund for 2 years exam-
ines the relevance of the notion of spirituality and spiri-
tual pain for hospice patients (Arm A) and their carers
(Arm B), and the health professionals who look after them
(Arm C), as well as cancer survivors (Arm D) and patients
undergoing curative care in a hospital setting (Arm E). The
findings reported in this paper are presented from the arm
of the research that explores aspects of spirituality in rela-
tion to survivors (Arm D).
The participants in this arm of the study were enrolled
through the support worker at the Leukaemia Foundation
of Queensland (LFQ). Prospective participants were con-
tacted and told of the study and invited to participate in
an interview. All of the participants contacted agreed to
participate (n = 12), giving a participation rate of 100%.
Participants were informed of their ethical rights (such as
informed consent, confidentiality, right to withdraw)
before agreeing to participate and a written consent was
obtained prior to the interview. The university ethics
committee has approved the study and the ethics com-
mittee has ratified project descriptions and consent
forms.
Target population
All of the participants have been diagnosed with a haema-
tological malignancy, which are cancers of the blood and
blood forming tissues such as the leukaemias, lymphomas
and myelomas (McGrath 2001b). Patients in these diag-
nostic groups face a potentially life-threatening condition
and undergo risky, aggressive, invasive treatment proto-
cols, including bone marrow transplantation, total body
irradiation and high dose chemotherapy, that extend over
lengthy periods of time (McGrath 2000). Consequently,
this group of survivor would have experienced a potential
confrontation with death both at the point of diagnosis of
their life-threatening condition and subsequently during
their risky high-tech treatments.
228 © 2004 Blackwell Publishing Ltd, European Journal of Cancer Care, 13, 227–237
Most of the participants were men (n = 8), with less than
half being women (n = 4) and suffered from a range of hae-
matological malignancies including chronic myeloid leu-
kaemia (n = 5), acute lymphoblastic leukaemia (n = 2),
acute myeloid leukaemia (n = 2), multiple myeloma
(n = 1), non-hodgkin’s lymphoma (n = 1) and Ewings sar-
coma (n = 1). The ages of the participants ranged from 25
to 60 (25–29, n = 3; 35–39, n = 2; 40, n = 3; 50–55, n = 3; 60,
n = 1). For most of the participants it had been from 3 to
8 years since they had been diagnosed (3 years, n = 1;
4 years, n = 1; 5 years, n = 3; 7 years, n = 3; 8 years, n = 2),
although for two participants the time since diagnosis was
much longer (12 years, n = 1; 15 years, n = 1). The majority
have undergone at least one bone marrow transplantation
(n = 8), and all have experienced extensive chemotherapy
and radiotherapy. More than half of the participants had
undergone 5 years or more post-treatment (5 years, n = 3;
6 years, n = 2; 9 years, n = 1; 10 years, n = 1), an important
point in time that signals cure in oncology terms. How-
ever, five of the participants were still under the 5-year
post-treatment (1 years, n = 1; 3 years, n = 2; 4 years,
n = 2).
Methodology
The meaning survivors are making from their illness
experience has been documented through qualitative
research using an open-ended interview with each partic-
ipant. The interviews were conducted by a psychosocial
researcher with a counselling background, a track record
in spirituality research, and experience for many years
working with families coping with a member with a hae-
matological malignancy. The time and location of the
interviews were of the participants’ choosing. The partic-
ipants were encouraged to tell their story from the point of
prediagnostic symptomatology up to the present with the
opening prompt question: ‘Could you tell me of your expe-
rience, in your own words and in your own way, from the
time you became aware that you were ill? How has that
changed how you see the world and what you believe is
important?’
The interviews were audio-recorded and transcribed
verbatim. The language texts were then entered into the
NUDIST computer program and analysed thematically. A
phenomenological approach was taken to the recording
and analysis of the data. All of the participants’ comments
were coded into free nodes, which were then organized
under thematic headings. The coding was established by
an experienced qualitative researcher. A second investiga-
tor for the project reviewed and validated the coding.
There was complete agreement on the coding and emer-

gent themes. There were 75 free nodes created for the full
analysis of the survivors’ transcripts, of which the 12
directly related to the topic, ‘Illness as Spiritual Journey’,
are presented here.
As inductive, phenomenological, qualitative work, the
reporting of findings is based on a commitment to the par-
ticipants’ point of view with the researcher playing the
role of co-participant in the discovery and understanding
of what the realities are of the phenomena studied (Streu-
bert & Carpenter 1995; Crombie 1996; Greenhalgh & Tay-
lor 1997; Holloway 1997). Thus, a narrative account
dominates, with a clear separation between the presenta-
tion of the exact words of the participants in the findings
section and the interpretation in the discussion section
(Grbich 1999). For economy of presentation the selected
nodes have been organized under categories that, when
juxtaposed, build an outline of the issues (Marshall &
Rossman 1995; Coffey & Atkinson 1996).
FIN D IN G S
Caveats to the following discussion
One important caveat to the following discussion is that
the present medium for expressing the insights provided
by the participants in the research is that of the written/
spoken word. This is limited, for as one participant noted,
‘there is so much that happens during a transplant that
you can’t even put into words’.
All of the participants spoke of their experience with
the illness and its treatment using the language of a spir-
itual journey that had direct consequences for their per-
sonal development and the meaning they are making out
of life. However, the description of the spiritual journey
was set in the context of clear statements by most of the
participants that they were not religious and did not nec-
essarily have a belief in a God or an after-life. Thus, there
was within the text a ‘non-religious contradiction’ where
individuals were making references to feeling protected,
being chosen and a finding sense and purpose in life, but
without acknowledging a belief in a higher being or reli-
gion. The data with regards to the contradiction is com-
plex and fully explored elsewhere (McGrath 2001c, 2002),
but needs to be acknowledged in the beginning of the pre-
sentation of the data on the spiritual journey in order that
the fullness of the secular nature of the statements can be
appreciated. Typical examples of the ‘non-religious con-
tradiction’ include,
I did pray when I was going through the transplant.
But I didn’t know whom I prayed to. But I did pray.
(And did it give you comfort?) Not really.
© 2004 Blackwell Publishing Ltd, European Journal of Cancer Care, 13, 227–237
Reflections on serious illness as spiritual journey
Because my white cell count was so high, some-
thing should have happened. So I was being looked
after. (Is that a notion of being looked after by a God
or from a religious point of view or not?) No, not
really, not really.
Confrontation with death forces one to explore life
A significant factor seen as instigating the ‘journey’ is the
confrontation with death that eventuates from being diag-
nosed with a life-threatening condition. The survivor is
made acutely aware of the fragility of life and their own
mortality, with the consequence that they are challenged
to think closely about the meaning and purpose of their life.
I guess to a certain extent you are no longer bullet-
proof. You realize your mortality.
I guess going through the leukaemia and facing your
mortality, I think you are forced to sort out for your-
self what you believe and you go through ‘why?’ and
that forces you to work out what you really do
believe.
I guess it’s also a lot more realistic too. I don’t sort
of live in a dream world and I guess I am very much
aware now of things that can happen.
The confrontation with such fragility is not only from
the illness but also from other patients they meet during
visits to the hospital,
I was sitting in the waiting room and this figure
walked in and I thought he looked familiar (it turned
out to be old friend) we got talking . . . they buried
him in early January and that was a bit of a shock to
me because he was getting better and then all of a
sudden.
Where the survivor had a meaningful framework, prior
to the diagnosis, that was based on an appreciation of the
finality of life and a strong sense that life has reason and
purpose, then the confrontation affirmed these beliefs and
facilitated the transition to survivorship.
(You already had a framework for making meaning
that wasn’t affected by the illness?) Yeah, yeah, well
as I said I’ve always felt that we’re all put here for a
reason. To do something for somebody . . . I did have
a framework. Well I guess it focuses you more, having
the illness and the threat. When you’re diagnosed
you’ve got the threat of death – an early death – the
question mark is when.
For others the meaning-making develops over time
around the following notions.
229
MCGRATH
Everything happens for a reason
A spiritual notion of causation that surfaced in the con-
frontation with death is the idea that everything in life
happens to the individual for a reason,
Everything happens for a reason . . . yeah I am a big
believer in that.
There’s something I’m here to do, because the
amount of death I’ve seen in the last 5 years should
probably have made me different or harder but it
hasn’t and I do believe there is a reason. . . . every-
thing happens for a reason but whether that is spiri-
tuality I don’t know.
Chosen/saved for a reason
Based on the idea of spiritual causation, for some of the
participants the confrontation with death became associ-
ated with a sense of being ‘chosen’ to undertake the illness
journey,
I guess I did decide that it . . . there is definitely a
power there and then in my case . . . I chose that it
was God. But I do believe that everyone, not every-
one, but people believe that there is a power to be, or
something, and in my case, I decided that there was
a God and he chose me, I guess to go through this and
the way it happened I believe I was meant to survive
because of the way it happened.
I don’t know what it is but I do believe I’ve been
saved for a reason because my odds were against me,
an unrelated transplant, I mean they were against me.
The sense of being chosen was not only reflected in
the opportunity to live and embrace the spiritual jour-
ney of illness, but was also expressed as being chosen to
die,
I did struggle a lot with the second transplant, with
this idea of um, maybe I’m meant to die. See it failed,
its failed the transplant failed maybe the universe
wants me to die.
The sense of being chosen was accompanied by a sense
of being protected and that things would work out favour-
ably in the end. This was noted as a feeling or awareness
rather than an intellectual thought,
I just had this, I don’t know, this awareness or this
something come over me. No, its going to be really
tough, it’s going to be really hard and it’s going to
probably be worse than I could every imagine, but
yeah, I think it is going to be alright. Yeah, and I think
230 © 2004 Blackwell Publishing Ltd, European Journal of Cancer Care, 13, 227–237
something ultimately good is going to come out of
this. I don’t know. . . .
Because in my own mind I wasn’t going to die. Not
at that stage because I was getting treatment and at
that stage the side effects hadn’t kicked in.
Some of the participants could relate a vignette of a par-
ticular point in time when the feeling of being chosen and
protected came over them,
It was a moment, because I was diagnosed and then
we drove to the hospital . . . the relatives came . . .
they were preparing me for the bone marrow biopsy
and my brother came into see me, before they put me
under we both just cried and hugged and it was at that
moment that feeling came over me, ‘it is going to be
alright’. And that is what I remember at that time.
A journey for ever
As the spiritual journey is based on a life-threatening ill-
ness and is thus not time-limited, it consequently extends
for the full life of the patient. As the following participant
states, the challenge is then how the individual chooses to
deal with the journey,
It’s forever, I think. You know, sometimes I’ll say,
when is this ever going to go away? And we both
agree, it’s never (laughs). You know its always going
to be there. It’s just how we choose to see it, and
handle it and deal with it, yeah.
Spirituality appeals
Participants indicated that a spiritual approach to the
illness/treatment experience was helpful and provided a
way of viewing the experience as a new and positive life
phase,
(Spirituality) probably appeals to me more ‘cause
um . . . like you can remember how things are when
your life is good and you feel energized and when you,
when you’re coming out of an illness or a just a period
when you’re really weak . . . you kind of have this
feeling that everything’s going to be okay. But at the
same time it is a struggle you are kicked around a lot.
But it (spiritual feeling) is reassuring that its like
you’re starting over again, I suppose.
Too scary for there not to be a spiritual journey
One participant spoke about the fear associated with the
illness and treatment and the consequent spiritual com-

fort that is gained for conceptualizing the illness experi-
ence as a spiritual journey,
It think the plan has already been mapped out and I
think that helped take the enormity of it away. To
believe that it was almost in someone else’s hands, to
a degree. Because if you believe that you’re totally on
your own, oh, its too much. It is bigger than me it is
bigger than me so you almost have to hand it over.
Other participants reinforced the idea that the emotion
of fear accompanies the journey,
for some reason that evening I took on all the nega-
tives. I just took every negative and I decided that
night that I was going to die . . . I started crying and I
was a huge mess. I freaked out majorly and wanted to
postpone the transplant.
I fear death of course. I said I don’t know if I am
going to die, I’ve been told what I’ve got and my odds
are not great, but I mean of course I’m going to fear
death . . . I think my biggest fear is that something
will happen to my family more than to me.
Oooh, I was just frightened of dying . . . it was just
the fear of dying. It is that uncertainty thing . . . it is
the process of dying and knowing that you are dying.
Need to do the journey
Participants indicated that, although the journey was
uninvited and unwelcomed, there were very positive out-
comes that they would not have experienced if they had
not been forced to undertake the spiritual journey. There
was a sense in which the insights and life experience pro-
vided by the spiritual journey informed who they are at
this point in time and thus would be determinant of their
future direction and achievements,
All this exploring I’ve been doing its something I
didn’t do prior to getting too ill. So its all you know
. . . change yeah . . . a different period of my life.
I don’t believe I needed to go through it . . . there
would have been a way for me to gain the information
that I’ve got than having to go through that. But at
the same time I guess to really actually think the way
I do now, I needed to go through that. And the other
thing it comes down too is that anything that happens
to me for now on, that’s like good, I had to, I believe
that the only way that would have happened to me is
having gone through my past.
Like I don’t believe that I would have got to the
same point if I hadn’t been sick so . . . when I get to
that positiveness, when I get to that which I know I
© 2004 Blackwell Publishing Ltd, European Journal of Cancer Care, 13, 227–237
Reflections on serious illness as spiritual journey
eventually will, like say I meet someone that I really
like, then the only way that would have happened is
to have been wherever I am at the time or to have
gone through everything.
Seeing the illness/treatment as a challenge
Participants used the word ‘challenge’ as a key concept in
their thinking about the illness and treatment experience,
I was thinking deep down I knew that I was going to
beat it and I saw it as a bit of a challenge.
It was like a challenge and I was going to beat it,
cause that how I’d sort of grown up in life. And when
the doctor told me that it was a bigger risk to have
the transplant than not to have the transplant I opted
to go for the transplant cause it was a challenge.
Need to take responsibility for the journey
An important aspect of seeing the illness as spiritual jour-
ney was the need for the individual to take responsibility
for contributing in some way to the cause of the illness.
you can’t . . . I don’t want to blame anyone for my
illness . . . so it is just a big kick in the bum for me
to sort things out and get healthy. There’s no use
blaming anyone. So yeah it is my responsibility
. . . probably due to my lifestyle and my decisions, so
therefore its my responsibility to change.
The pressure and the stress was coming in again
and the late hours were coming in and I was managing
my own staff and it was a huge office . . . and my
manager said he could see it happening again.
This is echoed in the consequent need to take respon-
sibility for embracing the spiritual journey and making
the personal changes necessary to ensure a successful out-
come. For these participants a key ingredient in the spir-
itual journey is the process of ‘owning’ the problem rather
than delegating responsibility to other people or other
factors,
Mum was like perfect. She was there the whole
time . . . it got to one point where she was there all
the time and it was getting too much for me and I
actually told her I want to do it myself. That was I
think the point where everything changed for me.
That is where I sort of went right . . . I can’t actually
give an exact date but I can remember . . . and I just
said, mum I have to do this myself now. I have to. I
think that was, to me, really the turning point for
everything.
231
MCGRATH
Making sense of the illness
As the participants reflected on their own contribution to
the illness, they provided many explanations or theories
as to what they believed the cause and effects to be,
I could look back on my past, over the past few years
and sort of, it made sense to me, why I got sick, things
I was doing and my lifestyle and so therefore I had a
chance for me to change.
I just drove my body too hard. Everything I did . . . I
did at 100%. Like I exercised hard and I was always
doing things. Not resting enough, think.
For me I had a bit of difficulty expressing myself
and I sort of . . . I think I repressed a few things and
well that mind–body connection. See I think it was a
combination of sort of emotional stuff and pushing
my body that lead to the breakdown in my health.
Strategies used by individuals
The spiritual strategies that the participants indicated
that they were using to cope with the illness were directly
related to their theories of illness causation,
You are forced to slow down, forced to . . .
I worked on it, for ah, initially I was very expressive
and I had a few problems with some of the drugs but
I tried to get all the stuff out and at the time I was
quite sick but I felt as though I needed to release all
this stuff. So it was a good thing.
Yeah, it was a few, there were a few relationship
type things but generally it was all mixed up, a lot of
stuff. And when that cleared, when things got a bit
calmer, yeah, it was, it was a lot better for me (laughs).
I didn’t explain it very well.
Such strategies were not always successful because of
the disease progression, but this did not detract from the
individual’s faith in the importance of the spiritual activ-
ity and direction,
I did do a fair bit last year when I was in between
chemotherapy or in between hospital stays, I sup-
pose, I tried to do a lot of soul searching. I suppose.
Went to the mountains, and went to Buddhist
retreats and did photography and meditated and
spoke to religious people and all this sort of thing.
And I was doing pretty well, I was doing, I was get-
ting back in interest in exercise. Cycling and doing
weights and a bit of surfing. I was starting to feel
good. But then I relapsed and there was another 3 or
4 months in hospital and then it was like ahhh it was
232 © 2004 Blackwell Publishing Ltd, European Journal of Cancer Care, 13, 227–237
time to have a transplant . . . I just thought the dis-
ease was pretty established like when we found it.
And therefore there was going to be a lot of work to
kind of beat it.
Proud of how handled the journey
Although participants perceived that they did not have a
choice about entering the difficult and challenging illness
journey, they expressed feelings of pride in their ability to
deal with the uninvited spiritual journey,
Mmm, very proud (of coping) (laughs). Yeah, Yeah.
I coped really well with not being able to have my
own child . . . Well I’m running my own business now
that years ago I would never have thought that I’d be.
With someone who is newly diagnosed, I just love
the fact that they can look at me and say ‘wow, look
at her, she is really leading a normal life . . . look at
what she’s doing. And that sort of thing.
I think there is a sense of having faced up to a
pretty big task. It’s probably satisfaction . . . it’s not
pride in any way. It is sort of like well I didn’t ask for
this. But it is sort of like well this has been thrown
up and we’ve gotten through it. You know we’ve han-
dled it.
You still feel normal . . . you don’t come out feeling
like you’ve beaten the world, you come the other side
having coped and feeling satisfied with that.
Lucky to have journey
There was a sense in which participants not only felt ‘cho-
sen’ but in some way ‘fortunate’ to be given the opportu-
nity to undertake the spiritual journey of illness,
Absolutely. I sort of describe it almost as a gift, you
know. Like (my partner) and I have talked about this,
we think we’re lucky in a way, it is so weird. Like
you think back to the horrors and you wouldn’t think
that you were lucky because of what you went
through and the fact that we can’t have children, but
we think we’re lucky because we’ve, um, I believe
I’ve really found a happiness, here. That is transport-
able. That it’s not a happiness that you get from
extrinsic. . . .
(And do you think you would have got to that
space if you hadn’t had this journey?) Probably not,
no, I don’t think so. I think I might have been slightly
heading there. I had the potential but this just really
concreted it. I guess. Made it strong. Really get
strong.

A changed person
Participants spoke in detail of the positive changes to
their sense of personhood that resulted from having been
forced to undertake the spiritual journey as a result of
their serious illness. The full details of these changes are
explored elsewhere and include an increased sense of con-
fidence, less dependence on the approval of others, a
greater ability to give priority to own needs, less judge-
mental of others, and less concerned about superficial
values.
BALA N C IN G TH E P I CT UR E
Although participants used the language of a spiritual
journey in much that they talked about while describing
their experience with serious illness, this was not the
complete story. Throughout the discussions there were
many references to doubts and uncertainty, and cynicism
was an important factor impacting on their spiritual
framework.
Cynical at times
A caveat to the notion of viewing the illness as a spiritual
journey is the idea that the survivors did lapse from this
framework at times, particularly in troubled times of pain
and serious symptoms,
I don’t feel, I must admit . . . that feeling (spiritual
feeling that everything will turn out okay) does
escape me still at times.
Sometimes you do feel stronger in that belief than
others. Sometimes it is, oh there mustn’t be (a tran-
scendent being in control) who would do this? No
one would do this to somebody else. Yes, some-
times when you’re going through the most painful, I
guess.
You do have your real cynical moments.
Pain and difficult symptoms affect meaning-making
An important factor that survivors of a haematological
malignancy have to deal with is the fact that the treat-
ment can be worse than the disease. Individuals diagnosed
with a haematological malignancy are often faced with
high dose chemotherapy, total body irradiation, bone mar-
row or peripheral stem cell transplantation. These are
invasive, aggressive, often painful, and risky procedures
that are accompanied by severe side effects. Spiritually the
individual can be challenged to make sense of the aggres-
siveness of the treatment,
© 2004 Blackwell Publishing Ltd, European Journal of Cancer Care, 13, 227–237
Reflections on serious illness as spiritual journey
I would think, ‘no one would do this to somebody
else!’ when you are going through the most painful.
One consequence of this is that the meaning the indi-
vidual is making from the illness journey can vary depend-
ing on what they are coping with in terms of the
treatment or the disease,
It depends how I would have been feeling I guess on
that day.
If the pain or physical distress is severe enough it can
cause the individual to loose a sense of meaning in life,
There was a time when I was really sick, about 6, 5,
6 months ago when yeah I was sort of losing
. . . losing faith . . . I just felt as though everything
was a bit too much and I lost sight of the big picture
there for a while.
All the treatment has knocked me around a bit, so
therefore, it’s a bit, ahh, yeah, I’m starting again at a
lower level.
Examples of physical distress that was significant
enough to alter meaning were Graft Versus Host Disease
(GVHD), treatment related anorexia, and low blood
counts,
The GVHD is pretty full on . . . I didn’t realize it
would hit me so hard it was not a happy time.
It was probably depression but I was really weak I
could hardly work I was really thin couldn’t eat. It
was just like I couldn’t do anything. I was just in this
room. So all the high doses of cortico-steroids . . . I
was on heaps of different drugs so my thinking was a
bit clouded there for a while.
Going through the trauma of the transplant you
were . . . yeh, you look at death, I guess more closely
(laughs). Because you can feel so down. Down in pain,
um, waiting for your blood counts to improve, so that
because that is an indication you may get better. But
um, I don’t’ know if I ever got that down I was sorry
that it happened. I always was always waiting for the
next day to see that my blood counts had improved.
At times of severe physical distress individuals were not
able to effectively process or respond to significant exis-
tential issues as can be seen by the following vignette of a
most inappropriately timed personal note,
She (girlfriend) gave me a note that basically said
that she couldn’t handle any more and was breaking
up . . . I read it an went huuuuh. I was on mor-
phine, pethidine, whatever they could feed me
cause I was pretty much had all be cut up. and
233
MCGRATH

actually they had me on a epidural and they had it could really do without all this . . . death didn’t seem
too high and so they’d actually cut me below where a fearful thing to be frightened of.
the epidural worked. So I was in like this severe
It was noted that the situation of severe physical
amount of pain on top of it. I actually got to the
deterioration would not only lead to contemplation of
point where they were giving me injections every
death but would also be conducive to seeking religious
sort of 15 min and I didn’t sleep for 3 days or some-
consultation,
thing like that.
(Talking of religious people) depends how sick I am.
A positive outlook is insufficient to ensure that the
How you were feeling. If you thought, oh I am not
individual is able to go on and achieve meaningful activ-
going to get through the day – I suppose you’d want
ities or put existential plans into action, the physical body
to speak to someone like that . . . mmmm.
must also be willing,
Even memories of the pain and difficulty associated
It is like I’ve got all these ideas and I want to do a lot
with treatment can affect later core meaningful activities.
of things but my body just keeps saying no or its
Here one survivor talks about not pursuing fertility treat-
saying hang on, slow down a bit . . . you have got to
ment because of memories of treatment trauma despite
listen with it and work with it and then slowly slowly
the spiritual pain she is experiencing over infertility,
improve.
I went into that room and spoke to him (a patient)
One participant spoke in detail of the feeling state that
and the nurse was there struggling trying to find his
replaces the sense of meaningful connection with life
vein and he would grimace sometimes with the pain
when the physical symptoms become too distressing,
on his face. And I though ‘I can’t do this again’ . . . I
Things were not making sense and I felt disjointed just couldn’t hack it . . . it used to always take three
and I felt as though I was right out on the edge and nurses to find a vein for me . . . I left crying all the
everything was really weird and I was thinking that I way home and I thought God is trying to tell me
might not be able to get back, but like your body is something here. I’m not going through that again.
pretty amazing. With a bit of time, things get better.
The reverse is also reported, and that is that lack of
(It is almost hard work at times trying to keep the
symptoms and physical wellness promotes a positive out-
rational, I am making sense of this’ going?) yeah, it
look for the survivor,
was just like a detachment feeling. Like things really
weren’t real. And after that I started to feel good, feeling well for
the first time in sort of 12 months.
Another described how experiencing the physical dis-
I got through it fairly easily and a lot of people
tress without support can lead to contemplation of the
didn’t even know I was sick.
desire to die,

During the first transplant I was still very ill and felt
shocking. But I’d been in hospital for a couple of The achievement and the anticlimax
weeks and I think I’d gotten to that point where you
The danger to the meaning-making does not just occur
feel isolated and separate . . . you look out the win-
at critical times of pain and severe symptoms, it can
dow and there is another world going by. And you sort
also set in after the positive feeling of completing treat-
of like, well, your life is now in hospital. And I was
ment has passed. As will be discussed in later articles,
feeling shocking and I said to her, I think I can under-
the full significance of the illness spiritual journey is
stand how . . . I wasn’t in pain or anything, but you
not appreciated or realized until well past the treatment
can sort of understand that people can accept dying.
stage. During treatment the focus is purely on survival
You’re not well you are sort of disconnected from
and other existential issues are put on hold. Thus, there
everything and my family weren’t there . . . maybe if
is a crises point post-treatment where the challenge of
they were there I wouldn’t have been contemplating
survival lessens and the survivor must reframe their
all this. I didn’t have a death wish or anything. I
meaning-making of the illness journey, as one partici-
wasn’t saying to myself . . . but I was sort of saying ‘I
pant explains,
can understand. Cause just your sense of separation,
your sense of, It’s alright! Goes . . . I feel so ill that it’s Because long after the transplant, years down the
going to be a release . . . I could do without this. I track, I had trouble coping because you have the feel-

234 © 2004 Blackwell Publishing Ltd, European Journal of Cancer Care, 13, 227–237
 Reflections on serious illness as spiritual journey

ing that you have climbed the highest mountain in ago . . . I mean looking at your job, promotions and
the world and there’s nothing left to conquer. income . . . but it ain’t going to be.

In spite of positives could have done without

the experience
Although participants reported a sense of gratitude for the
journey there was also the notion that there could have
been easier ways of achieving the same results and a def-
inite sense that some of the survivors could have done
without the journey, for example,
I like the result I don’t like the reason. With the
positives, I mean I could have done without this. You
know, we’re sort of forgetting about what could have
been and you have got to.
I mean we could be in our second house . . . but you
could have been killed in a car accident 10 years
DI SCUSSI ON
As summarized in Fig. 1, the participants reported that
the confrontation with death caused through being diag-
nosed with a life-threatening illness and facing risky,
invasive treatments, heightens their sense of the fragility
of life and presents them with the challenge of finding a
framework for making sense of the experience. The chal-
lenge is underpinned by a sense of fear, lack of choice and
a desire to live. Finding meaning in the experience by
using the existential framework of ‘Illness as Spiritual
Journey’ is seen as providing an important comfort-zone:
as it helps to make sense of a difficult life situation,
through a protective rationale that affirms and supports

LIFE-
THREATENING
DIAGNOSIS

CONFRONTATION WITH
DEATH
MEANING-MAKING
(Spirituality)
Spiritual Pain Spiritual Comfort
(tension)
Fragility of life
Fear
Lack of choice but to face challenge
Eros – wish to live
Need to make sense of life situation

Spiritual Pain Spiritual Comfort

'Life has no 'Illness as Journey'
meaning' (Affirms meaning-
(Challenges making: protective,
meaning- positive, helps)
making) Everything happens
Cynicism for a reason
Pain and Chosen/saved for a
difficult reason
symptoms A challenge
and side Need to take
effects responsibility for
affect journey
meaning- Making sense of the
making illness
Anticlimax Pride in how handled
No choice – the illness journey
could have Positive outcomes
done Personal growth
without Lucky to have the
challenge journey
Suicidal
ideation

Figure 1. Spiritual comfort –

illness as journey.

© 2004 Blackwell Publishing Ltd, European Journal of Cancer Care, 13, 227–237 235
MCGRATH
the individual’s struggle. The term ‘spiritual comfort’ has
been given to this aspect of meaning-making. Key
notions in the framework assist the individual to cope
with the illness, such as the belief that everything hap-
pens for a reason, the sense of being chosen, the need to
take personal responsibility for the journey and seeing
the process as a challenge. Through such a framework
the illness experience can be viewed in positive terms
such as pride in dealing with the situation and an assess-
ment of outcomes in terms of personal growth and a pri-
oritizing of values now considered significant. Through
such a framework individuals can come to feel fortunate
in having been forced to undertake the ‘journey’ despite
its difficulties. Also participants indicate that such a
view of their illness provides a different ‘lens’ with which
to evaluate outcomes, which allows them to see a wide
range of positives in what could otherwise be seen as a
very negative experience.
However, as Fig. 1 also summarizes, the privileging of
this construction of the illness narrative is only part of the
story. Participants indicate that they do not adhere to this
framework all of the time and there are considerable times
of cynicism and doubt. Excessive and unrelieved pain, dis-
tressing physical symptoms and being asked to endure
unacceptably aggressive and invasive treatment interven-
tions, are all significant factors that challenge the positive
meaning-making of individuals. For the purposes of this
analysis such challenges to meaning-making, and the dis-
comfort it causes, has been labelled ‘spiritual pain’. The
individual’s struggle with the illness experience also
incorporates a struggle with the tension between the spir-
itual pain of meaninglessness and spiritual comfort of the
set of beliefs included in the existential framework of ‘ill-
ness as spiritual journey’.
Spiritual frameworks for making sense of serious ill-
ness is obviously an area where dichotomous, linear
logic has scant relevance. Although the participants
made clear statements that they were not religious
(McGrath 2002) they spoke of their secular, existential
framework in spiritual terms that echoed religious
notions of a protective transcendent being/power, a
meaningful universe and the choice of a moral pathway
that leads to positive spiritual outcomes. Clearly there
is a difference between religion and the spiritual narra-
tive of this group of survivors, but the language of differ-
ence is not dichotomous, embraces contradiction, and at
times, mixed metaphors. However, there is a strong
commonality in the participants’ statements indicating
a shared spiritual framework and accompanying lan-
guage that has a comforting, positive value for the survi-
vors. The insights on this framework go some way to
236 © 2004 Blackwell Publishing Ltd, European Journal of Cancer Care, 13, 227–237
enriching our understanding of the notion of spiritual-
ity for survivors of serious illness.
CONCLUSI ON
It is exciting to be in the position to report findings on
research in relation to spirituality that has been funded by
a leading medical research organization. The initial
results of the study indicate that developing spiritual
frameworks is an important aspect of the illness experi-
ence for survivors. By so generously sharing their reflec-
tions on their ‘illness journey’ this group of survivors have
contributed to our understanding of what the notion of
spirituality means to those who have to face the challenge
of coping with a serious, life-threatening illness. It is the
hope and expectation that the findings will be part of the
ongoing process of active listening through research,
where the insights of those touched by illness and dying
help us to understand the nature and significance of spir-
ituality in health care.
ACK NOWLEDGEMENT S
I would like to thank Ms Emma McGrath, BA, LLB (Hons),
AMusA, LMus, for her work as research assistant for this
project and Mrs Elaine Phillips for transcribing the audio
tapes.
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© 2004 Lippincott Williams & Wilkins, Inc., Philadelphia

Lena Persson, PhD, RNT

Ingalill Rahm Hallberg, PhD

Lived Experience of Survivors of

Leukemia or Malignant Lymphoma
K E Y W O R D S Individuals (n = 18) in remission from acute leukemia or highly malignant
Acute leukemia lymphoma were asked to narrate their lived experience of falling ill, of being under
Cancer survivors treatment, and life following this event. The transcribed texts were analyzed from a
Lived experience phenomenological-hermeneutic perspective, expanded by their medical and social
Malignant lymphoma history as related in interviews. The analysis revealed 3 themes: (I) Believed in life,
Nursing fought for it and came through stronger; (II) Life went on, adapted and found a
Quality of life balance in the new life; (III) Life was over, felt out of control and lost belief in life.
Participants in the first 2 groups viewed their quality of life as improved and stated
that the struggle had been meaningful and that the experience had made them
grow, as a person, related to the experience of gaining new insight or strength.
The third group of survivors viewed their quality of life as worse. They found no
meaning in their experience and evaluated the situation with bitterness. Thus the
core of living through having acute leukemia or highly malignant lymphoma
seemed to be to find meaning with it and the profound crisis it meant to them. To
help people retell their experiences may be one way of processing this life-
threatening disease and treatment and may be one way to developing a sense of
meaning and to regain balance in life.

T
here is a lack of knowledge, from the patients’ perspec-
tive, of how people who have had acute leukemia (AL)
or highly malignant lymphoma (HML) experience the
process of falling ill, of being under treatment, and their life
following this event. One way to explore these experiences is
by having patients talk about them once they have gone
through them. Telling stories is one of the significant ways in
which people construct and express meaning. Thus, their nar-
rations may constitute a source for an increased understanding
of their experience.1 The knowledge derived from such

From the Department of Health Sciences, Kristianstad University,
Kristianstad, Sweden (Dr Persson); and the Department of Nursing, Lund
University, Lund, Sweden (Dr Hallberg).
This study was supported by grants from the County Council of
Kristianstad, Sweden, and from George Danielsson’s Research Fund for
Hematological Diseases.
Corresponding author: Lena Persson, PhD, RNT, Department of Health
Sciences, Kristianstad University, SE-291 88 Kristianstad, Sweden (e-mail:
Lena.Persson@staff.hkr.se).
Reprints: Lena Persson, PhD, RNT, Department of Health Sciences,
Kristianstad University, SE-291 88 Kristianstad, Sweden.
Accepted for publication March 10, 2004.

Lived Experience of Survivors of Leukemia or Malignant Lymphoma Cancer Nursing™, Vol. 27, No. 4, 2004 ■ 303
narrations can, in turn, provide an important basis for delin-
eating nursing care that will support the patients through the
disease and the treatment.
People suffering from AL or HML are under great stress
induced by the discovery that they have a life-threatening dis-
ease. The disease and its treatment lead to physical problems,
such as energy loss and nutritional problems, which add to the
psychosocial burden.2 Although aggressive treatment programs
may be successful, severe side effects are common, including
gastrointestinal problems, infections, and alteration of body
image and pain. There may also be changes in interpersonal
relationships, resulting from the disease, treatment program,
and side effects.3 It may be difficult to verbalize these experi-
ences while under treatment because of the uncertain outcome
and all the physical problems that have to be faced and
endured to survive.4 When in remission, the patient probably
has a different perspective and a distance to the experiences,
making it easier to examine them in depth. According to
Mishler,1 casting an experience into a narrative form is the
most fundamental way for a human being to make sense of it.
Knowledge derived from such stories can provide ideas for how
to ease the patient’s burden during the disease and treatment as
well as process it afterwards.
In an earlier study, AL and HML patients were found to
have a reduced quality of life dating from the start of the treat-
ment and lasting throughout the first 2 years. Role and social
functioning were the psychosocial areas most affected, while
fatigue, dyspnoea, and sleep disturbances were the most severe
physical problems experienced. People who relapsed during
the 2 years already had, at the start of treatment, a significantly
reduced quality of life regarding most functional aspects and a
higher level for most symptoms compared to those who did
not relapse.5 Long-lasting psychosocial dysfunctioning has
been reported, with energy loss, an increased divorce rate,
infertility, less interest in sexual activities, and problems in
returning to work.6,7 A greater appreciation of life,6,8 exempli-
fied by positive changes in activities, priorities, and relation-
ships9 has, however, also been reported.
In addition, there may be consequences that are under-
standable from a family perspective rather than from the
patient’s perspective alone. A study including the spouses of
people who have had AL or HML emphasized the interdepen-
dency between spouses and their ill partner.10 Three different
family types were identified: (a) the couple acting as a unit, (b)
the couple acting independently and on equal terms, and (c)
the couple acting separately with the spouse subordinated. The
family type and the spouse’s personal resources affected how
the crisis was handled and whether or not the spouse came to
terms with the entire experience. Contentment was related to
spouses included in family type a or b, who had the power to
ask for what they wanted, took control over the situation, and
used their social network and healthcare staff to meet their
needs. Discontentment was related to spouses without this
resource, included in family type a or c, and they failed to take
control.10 The family structure and the parties’ ability to take
control over the situation may also have an impact on the dis-
eased person.
304 ■ Cancer Nursing™, Vol. 27, No. 4, 2004
Falling ill and undergoing treatment for AL or HML may
well be understood in crisis theory. A crisis is defined as occur-
ring “when a person faces an obstacle to important life goals
that is insurmountable through the utilization of customary
methods of problem solving. A period of disorganization
ensues, a period of upset, during which many different
abortive attempts at solution are made”.11 Caplan11 identified
4 phases in a crisis: impact, disorganization, recovery, and reor-
ganization. Although the model is depicted linearly, patients
can fluctuate between stages. The imbalance between the
ability to meet daily living requirements due to compromised
functional health status caused by having a life-threatening
disease and its treatment may take such proportions that it puts
the patients and their family in a crisis situation.
A narrative approach is one way, for the people involved, of
creating and giving meaning to a crisis. Narratives have been
used not only to articulate suffering but also to give the sufferer
a voice with which to articulate the illness experience.12,13
Hyden12 highlighted 5 different uses that can be made of ill-
ness narrative: to transform illness events and construct a
world of illness; to reconstruct one’s life history in the event of
a chronic illness; to explain and understand the illness; as a
form of strategic interaction to assert or project one’s identity;
to transform illness from an individual into a collective phe-
nomenon. No earlier prior research have been found in which
narrations have been used to investigate the life situation for
people who have had AL or HML, even though this may be
one way to develop new insights about these patients’ experi-
ence. Understanding the meaning of such an experience may
be helpful in outlining prevention and intervention strategies
for effective and individualized nursing care to help the sick
person through the disease and treatment and to come to
terms with the entire experience once he/she has survived. It
may serve the purpose of understanding the experience for the
person as well as for others and to transform illness from an
individual into a collective phenomenon.12
 Aim
The aim of this study was to uncover the meaning of lived
experience of falling ill with AL or HML, of being under
treatment, and of life following this event.
 Methods
Sample
The sample for this study was drawn from patients currently
in remission from AL or HML (n  65) at the hematological
section of the Department of Medical Care at a central hospi-
tal in southern Sweden, between January, 1989 and September
1993. Fifty-four of these individuals had responded to an ear-
lier questionnaire that ended with an invitation to participate
in an interview (2). Of the 54, 19 people volunteered for the
interview, 18 met the study criterion of having been treated
with chemotherapy and constitute the sample in this study.
Persson & Hallberg
Participants’ mean age was 57.7 (SD  15.6). The sample was
almost evenly split between men (n  8) and women (n 
10). Four of them had the diagnosis AL and 14 had the diag-
nosis HML. The interviews were performed during 1995.
Data Collection
Narrative interviews were chosen to achieve descriptions of the
lifeworld of the participants in order to interpret the meaning
of the phenomenon “being survivor of leukemia or malignant
lymphoma”.1 The interview explored the respondents’ experi-
ences concerning their life prior to the diagnosis and during
the treatment and their present life. The interview also assessed
their available support and alterations in daily activities. The
interview began with the following introduction: “I would like
you to please narrate your experience of falling ill, being in
treatment, and recovering. You can start the story where you
want. You are free to talk about it in whatever way you choose.
I’ll go back and ask you more specific questions in the areas
where I want to know more.” Thus, the respondents were
invited to tell their story in a narrative way from when it began
until the time of the interview. This open-ended introduction
was given to encourage them to narrate freely their personal
thoughts, feelings, and perceptions about their experiences.
The interviews were conducted in the respondent’s home or in
the authors’ office and varied in length between 60 and 150
minutes, were tape-recorded, and were transcribed verbatim.
Analysis
The analysis was inspired by a phenomenological hermeneutic
method developed by Norberg and Lindseth14–16 The method
seeks to uncover the meaning of the lived experience.17 The
method was applied as a stepwise analysis assumed to lead to a
deeper understanding of the texts. The interpretation process
includes 3 phases (1) a naive reading to gain a first under-
standing, (2) followed by structural analyses aimed at explain-
ing the texts, and finally, (3) interpretation of the texts as a
whole. The interpretation of the text was seen as phases in a
dialectic process, moving from understanding to explanation
and from explanation to comprehension.17
The first step in the analysis was a naive reading, aimed at
acquiring a sense of the meaning of the texts as a whole, which
in turn provides ideas for the next phase, the structural analysis.
In the naive reading the impression was that the stories showed
great variation. Some of the respondents narrated their stories as
if the experience had given them a more positive view of life.
They talked about their experiences of the disease and treatment
as a burdensome period, which had given them a new insight
into the meaning of life and had changed them positively. Other
respondents’ stories were imbued with a negative attitude to life,
as if the struggle against the disease was not worth the price.
The naive reading was followed by a discussion between the
researchers of what constituted the core of the text, and how
the subsequent structural analyses should be focused. In this
phase, the text was examined in terms of distinct entities. The
text was divided into meaning units of 1 or several sentences,
with similar meaning in relation to the aim of the study. Each
meaning unit was condensed and abstracted to give a formu-
lated meaning concerning to the meaning of the participants’
lived experiences. The areas that emerged from the text were
the meaning of the lived experience physically/practically,
psychosocially, and existentially. Thus in the first structural
analysis, each of these areas was analyzed for their meaning and
from a time perspective, ie, initially when the symptoms first
emerged to when the diagnosis was given, during the period of
treatment, and through to their current situation (Table 1).

Table 1 • Themes That Emerged During the First Structural Analysis

When the Symptoms
First Emerged to the
Meaning of Life Time of Diagnosis
Life in a physical/ Increasing tiredness and
practical meaning infections
Life in a psychosocial Misgivings were justified
meaning Keeping things inside oneself
Like a bolt from the blue
Life in an existential Sensed a threat of death
meaning Understood the threat of death
but did not worry
Understood the threat of death
and life was turned upside
down
During the Period of
Treatment
The body broke down
Felt rather well
Lost control
The body felt unreal
Looked for strategies
Struggled and gained
control
Insulated themselves from
afflictions
Trapped and helpless
Lost control over their
feelings and reactions
Worked to live
Believed in life
A higher power gave strength
The future was unpredictable
Believed that life was over
In Their Current Life
Accepted remaining difficulties
Disappointed at not being restored
to health
Tougher and stronger
Positive changes in lifestyle
Turned in on themselves, hid their
feelings and felt powerless
A negative self-image and loss of
control over feelings
Given a new lease of life
Scared of the future
Bitter about life

Lived Experience of Survivors of Leukemia or Malignant Lymphoma Cancer Nursing™, Vol. 27, No. 4, 2004 ■ 305
 A structural analysis can focus on only one aspect at a time,
and the result of the first analysis determines the focus of those
that follow. Thus, several structural analyses may be performed
and their focuses cannot be predetermined. In this analysis, it
was decided to conduct a second structural analysis, as the first
structural analysis indicated that the narrations comprised the
subthemes identified, but that the pattern varied distinctly.
The difference seemed to be in the valuing of the experiences
retrospectively and in how the entire experience had influ-
enced current life. Three different ways of evaluating the expe-
rience were identified: (a) evaluating the experience as a
strengthening experience, (b) adapting to it, and (c) viewing
the experience with bitterness. The variation in their stories
stood out and was therefore important to make visible. The
interviews were read again and sorted into these 3 groups,
depending on how the interviewees spoke about the entire
experience. The first author and the oncology nurse did this
sorting independently of one another. Each interview was then
analyzed in relation to the subthemes. The analysis was
expanded by chronologically reconstructing the medical and
social history as told by the patient and extracted from the
interview.18 This was done because meanings are believed to be
contextually grounded.1 A scheme reflecting the content in the
subthemes was constructed for each interview. These schemes
were then compared for similarities and differences, and 3
themes emerged. The reconstruction from each interview was
incorporated into the interpretation in the second structural
analysis and the interpreted whole.
Finally, in the analysis process, the naive reading and the
structural analyses were subsumed into an interpreted whole.
This deeper comprehension of the texts was achieved by tak-
ing the naive understanding together with the themes and sub-
themes into consideration.
 Results
Ultimately, the 3 themes that emerged were the following:
(I) Believed in life, fought for it and came through stronger;
(II) Life goes on, adapted and found a balance in the new life;
and (III) Life was over, felt out of control and lost belief in life.
Believed in Life, Fought For it and Came
Through Stronger
When these people (n  5, 2 male and 3 female) became ill
(2 AL, 3 HML), they were in the process of starting a family
and working for an income. They were in an active phase of
their lives and focused on the future. This group was the
youngest, with an average age of 40.4 (SD 13.1). They lived
in stable relationships (Table 2).
INITIALLY
The time from when the symptoms first emerged to when the
diagnosis was given meant in a physical/practical sense increas-
ing tiredness and infections. The diagnosis assured them of the
reason for the complaints they had experienced for up to 1 year
306 ■ Cancer Nursing™, Vol. 27, No. 4, 2004
before diagnosis. In a psychosocial sense it meant that their
misgivings were justified. The difficulties they experienced were
explained and the suspicion that something was wrong was
confirmed. Not knowing had been worse than being given the
diagnosis because they experienced some relief in knowing that
now something would happen. Some of them where totally
unprepared and experienced the diagnosis like a bolt out of the
blue and were shocked when it was given. Existentially they
sensed a threat of death, which meant that they suspected that
their condition was caused by something serious, possibly life
threatening. This fear was met with a lack of affirmation by
people around them because the patient did not look sick.
Those who were totally unprepared for the diagnosis lost their
footing for a short time and found themselves in a chaotic sit-
uation. They understood the threat of death and life was turned
upside down. They stood face to face with death and they had
no strategies for dealing with the situation.
DURING TREATMENT
During the period of treatment, their body broke down and
their general physical condition deteriorated drastically. They
lost all energy and enthusiasm, occasionally they lost control,
both physically and psychologically. During those periods they
were unable to sustain a normal life. The difficulties took over
and dominated their everyday lives. For some, this happened
to such an extent that they had experiences of unreality with
psychotic influences, their body felt unreal. In a psychosocial
sense they looked for strategies, struggled, and regained control.
They focused on survival and fought against the illness and the
negative consequences of the treatment. They sought possibil-
ities, tested boundaries, and took control over their own situa-
tion. In this process, they received support from their relatives
and their social network and took the help they felt they
needed. Some of them lost control over their feelings and reac-
tions, meaning that they were afraid of going mad. Time lost
its meaning and they experienced gaps in their memory. They
also described difficulties in concentrating and mood swings
beyond their control. In an existential sense they believed in life
and worked to live. They decided to get through and survive.
They worked out strategies to cope with the difficulties and
fought against their illness. Belief in life meant trying to live as
usual, not thinking about death. Life itself contained a force
that helped them through the difficulties.
CURRENT LIFE
In their current life they were still physically impaired, but
accepted the remaining difficulties and saw them as something
they could live with. This meant that they adapted their lives
to the new situation or found strategies for combating it. At
the time of the interview, all participants in this group had
occupations, some full-time, others in combination with dis-
ability benefits. Even the youngest survivor had now formed a
family and had children. In a psychosocial sense they felt
tougher and stronger, meaning that after their illness they acted
more independently and thought more about themselves.
They dared to do more and were not afraid to try new things.
Persson & Hallberg
 Table 2 • Quotations From the Interviews Describing the Interviewees’ Meaning of Life Initially When the Symptom First Emerged to the Diagnosis was
Given, During the Period of Treatment, and in Their Current Situation
Believed in Life, Fought for it and Came Through Stronger
Meaning of Life Physical/Practical
Initially Increasing tiredness, infections
“…I was terribly tired. I could go on
sleeping even when I’d already slept for
12 hours. I found it hard to breath
…coughed and coughed… it wheezed
and rattled”
During treatment The body broke down
“I felt sick and had no appetite, physically
exhausted, my physical condition
deteriorated drastically. I lost 20 kilos in 6
weeks”
Lost control
“.. I began to feel fuddled, I wasn’t so clear
Lived Experience of Survivors of Leukemia or Malignant Lymphoma
about things, I had problems with my bal-
ance, when I carried on with the medicine I
got more and more things wrong with me”
The body felt unreal
“I found that trance-like period very difficult,
it was as if you were conscious but didn’t
have the will or energy to do anything” “the
body isn’t my own body, I’ll soon be insane”
In their current life Accepted remaining difficulties
“I still get infected easily, avoid people
with colds ... so I can’t have my old job
back. I’ve started to look for a new job,
starting a fresh”
Cancer Nursing™, Vol. 27, No. 4, 2004 ■ 307
Psychosocial
Misgivings were justified
“I suspected all along that it was serious, but no
one believed me. So I drew a sigh of relief that
someone actually cared about me … finally
someone believed me and would help me”
Like a bolt out of the blue
“you did not know anything. We sat in there and
waited … and then the doctor came in and prac-
tically threw it in our faces that it was leukemia.”
Looked for strategies, struggled and gained control
“I really had something to fight for … I never
gave up no matter how hard it was. If I manage
this I’ll manage the next lot. But of course it was
difficult sometimes”
Lost control over their feelings and reactions
“I lay on my bed and was completely gone, don’t
ask me if I ate or anything”
Tougher and stronger
“I think more about myself, I’ve become tougher”
“perhaps I’ve become more daring—perhaps in
the wrong way”
Positive changes in lifestyle
“I didn’t appreciate things as much before as I do now”
Existential
Sensed a threat of death
“The not knowing and waiting was hard, but deep
inside I had a feeling, I kept my fingers crossed”
Understood the threat of death and life was turned
upside down
“just think how fast things can happen, you
think you’ve got a stomach flu and suddenly it’s
a fatal illness”
Believed in life
“being ill was still living in a way. You lived
anyway. I have never doubted for a second that I
would manage it”
Worked to live
“well you had 50% chance of surviving, it wasn’t
no chance any longer, so I chose the 50 % which
was for survival”
Given a new lease of life
“I’ve got a new day and I’m not going to sleep it
away, a feeling like that”
“I’ve fallen in love with life today. Each spring I
can’t hold the tears back, they stream from my
eyes out of gratitude for life”
This meant a personal growth during their illness and a posi-
tive change in lifestyle. They appreciated little things in life like
taking a walk in the sun. They had become stronger as human
beings, and felt they had increased their ability to value life
itself. Relationships within the families had been strengthened.
In an existential sense they saw themselves as winners and felt
that they had been given a new lease of life, of which they tried
to make the most. They had left their illness behind them and
reported no anxiety about getting it back.
Life Goes on, Adapted and Found a
Balance in the New Life
This group (n  6, 3 male and 3 female) constituted the highest
average age, 68.2 years (SD  9.4), all with the diagnosis HML.
They were at the end of their professionally active lives. They
lived in well-functioning social communities where children and
grandchildren were an important part of their lives (Table 3).
INITIALLY
At the beginning of their illness they had had various com-
plaints (increasing tiredness, infections) for which they sought
medical attention. The diagnosis meant that their misgivings
were justified. In an existential sense they understood the threat
of death but did not worry. They were not afraid of death but
they wanted to fight for survival. At the same time they knew
that life would not last forever.
DURING TREATMENT
During the period of treatment, most of them had physical
and psychological complaints that worsened throughout the
treatment (the body broke down). Some of them felt rather well,
meaning that they experienced the difficulties in a way that
they found acceptable. This meant that they did not feel that
the difficulties they encountered had a particularly dramatic
effect on their lives. In a psychosocial sense, they looked for
strategies, struggled, and gained control. Their strategies for han-
dling the problem were not to give too much energy to the ill-
ness and its consequences. They insulated themselves from afflic-
tions, which signified that they would not admit anyone, but
kept everyone else and the illness away from themselves. Some
of them felt trapped and helpless, meaning that they had no
influence over the events, were in fact victims who passively
went along with the development. In an existential sense the
future was unpredictable. The future felt insecure, they were
tossed about between the certainty of survival and the fear of
not having enough energy. But, at the same time, they believed
in life, that life itself gave them support through an inner force.
Those who were spiritual believers said that a higher power gave
them the strength to deal with their difficulties. It was not they
who were responsible for their survival but a higher power,
which governed their lives and gave them support.
CURRENT LIFE
In their current lives they accepted the remaining difficulties,
such as not being able to handle stressful situations. They
308 ■ Cancer Nursing™, Vol. 27, No. 4, 2004
adapted their lives to the new situation. In a psychosocial
sense, they experienced positive changes in lifestyle, meaning
that they accepted and felt grateful for the new situation. In an
existential sense, they experienced that life goes on, meaning
that life took its own course and they were prepared for the
end. They had a rich life behind them, which was the focus of
their current situation. They were satisfied with their lives and
felt grateful for the time they still had, but at the same time
were prepared for the end, as a result of old age rather than
their illness. The narratives were positive and entailed an
acceptance of life as it was.
Life Was Over, Felt out of Control and
Lost Belief in Life
This group of survivors (n  7, 3 male and 4 female) were liv-
ing active lives at the time they developed the illness (2 AL, 3
HML), but were approaching retirement, having an average
age of 61.0 (SD  11.3). They had planned ahead for an adult
life after the children had left home. They were married and
lived in socially stable relations (Table 4).
INITIALLY
In the initial stage of the illness they had experienced various
complaints, for which they had sought medical advice (increas-
ing tiredness, infections). When they got the diagnosis they kept
their feelings inside themselves. They were used to being strong
people and did not show others their worry. In an existential
sense, they understood the threat of death and life was turned
upside down. They found themselves in a chaotic situation.
They had not previously sensed the seriousness in their condi-
tion and were totally unprepared and the diagnosis made them
lose their footing for a short time. They stood face to face with
death and had no strategies for dealing with the situation.
DURING TREATMENT
The treatment meant great physical and psychological stress
(the body broke down). They tried to maintain their usual lives
regarding work and acquaintances. They had only a short
amount of sick leave and started work again soon after treat-
ment. In a psychosocial sense, during treatment they insulated
themselves from afflictions, meaning that they tried to be strong
and not admit they needed any help. They tried to keep every-
one else and the illness away from them. They safeguarded
their independence and did not want any help. They shifted
between looking for strategies to fight and insulating them-
selves from difficulties. Some of them felt trapped and helpless
and that they had no influence over events. They had little self-
confidence and often felt ashamed of themselves and their sit-
uation. Sometimes they lost control over their feelings and reac-
tions and were afraid of going mad. Time lost its meaning and
they experienced gaps in their memory. They felt like victims
who passively went along with developments. In an existential
sense, they believed that life was over. They did not believe that
they would manage to cope with the pressures that they were
Persson & Hallberg
 Table 3 • Quotations From the Interviews Describing the Interviewees’ Meaning of Life Initially When the Symptom First Emerged to the Diagnosis was
Given, During the Period of Treatment, and in Their Current Situation
Life Goes on, Adapted and Found a Balance in the New Life

Meaning of Life Physical/Practical Psychosocial Existential

Initially Increasing tiredness, infections
“I got a heavy cold with a temperature and
had to go to bed … after two weeks I was
so tired and dizzy that I not longer had the
energy to go down stairs or prepare food”
During treatment The body broke down
“I lost 12 kilo in 3 weeks … I couldn’t get
anything down… it stuck in my throat …
it was swollen… so I had to eat gruel”
Felt rather well
“they said some people reacted to the
injection, but I didn’t”
Misgivings were justified
“Not knowing was worse, the fear was with me
all the time. It was a relief, a relief that
something would happen.”
Looked for strategies, struggled and gained control
“I tried to do as much as I could myself … and
it went quit well … I got special utensils to eat
with, with a large handle”
Insulated themselves from afflictions
“I didn’t have the energy to tell people about it, I
drank a couple of whiskies and had a cigarette. I
Understood the threat of death but did not worry
“knew it was serious, it had gone so far, but it
didn’t have to mean I would die”
The future was unpredictable
“we know that sometime we will be parted, but
we don’t know who will go first so, of course, it’s
difficult”
Believed in life
“I’ve got most things in life, if I died it’s OK, I’m
not afraid of it”

Lived Experience of Survivors of Leukemia or Malignant Lymphoma

“I didn’t feel bad at all, except for a little
pain in the tumors, but it didn’t bother me”
In their current life Accepted remaining difficulties
“now I have come to grips with the situa-
tion and found my own rhythm”
was sort of in a fog, it sort of calmed things down”
Trapped and helpless
“I can’t do anything myself, I’m bound hand and
foot”
“there were periods when I was really down and
cried for myself ”
Positive changes in lifestyle
“you become more humble with every day that
passes”
“I see everything more positively”
A higher power gave strength
“I believe there is a God, and I believe there is
something after this, otherwise everything would
be rather meaningless, if there was nothing after
death”
Life goes on
“we know nothing about tomorrow, it’s difficult
to plan ahead, one just has to make the best of
the situation today”
“life goes on, everyone has his time, You can’t
change it you just have to put up with it”

Cancer Nursing™, Vol. 27, No. 4, 2004 ■ 309

 Table 4 • Quotations From the Interviews Describing the Interviewees’ Meaning of Life
Life Was Over, Felt Out of Control and Lost Belief in Life
Meaning of Life Physical/Practical
Initially Increasing tiredness, infections
“I got awful colds, I had to stay in bed …
I felt tired and had headaches … I just got
more and more tired.”
“I was so tired I could barely stand up.”
310 ■ Cancer Nursing™, Vol. 27, No. 4, 2004
During treatment The body broke down
“I was so thin and miserable. I had always
kept in good shape and now all my skin
hung off me. I couldn’t bear it”
In their current life Disappointed at not being restored to health
“the tiredness is still there, I can’t manage
as much either physically or intellectual, I
don’t have the energy or will to stand up
to stress”
Persson & Hallberg
Psychosocial
Keeping things inside oneself
“I felt very alone, it hurt me both physically and
psychologically. When I saw my husband cry I
went all cold inside, and instead I was the one
giving comfort.”
Insulated themselves from afflictions
“I did everything to suppress this, with every
second, every hour that passed; I pushed it away
from me, wouldn’t have anything to do with it or
be reasonable”
Trapped and helpless
“I knew I was in a trap and couldn’t get out”
“I felt so small, my self-confidence was low, I
didn’t like that”
Lost control over their feelings and reactions
“it felt as if I had some alien thing in my body, it
was as if my nerves were sick, as if there was a
demon inside me”
“ I was certainly crazy”
A negative self-image and loss of control over feelings
“when I’m under stress everything knots up, I
lose my temper and I just have to leave”
“You think you are a big useless thing who can’t
do anything, you get angry with yourself. I could
do anything before.”
Turned in on themselves, hid their feelings and felt
powerless
“it was stressful and the demands kept increasing,
I had no time to get grips with my inner self, so
I hid it away”
Existential
Understood the threat of death and life was turned
upside down
“everything was going so well when this
happened. I was 100% alive, thought everything
was great, and then it all came crashing down”
Believed that life was over
“so that last moment has come, there’s nothing
else”
“I thought so this is death and the family will
break up”
Scared of the future
“I don’t feel I’d manage another time, I know
lots of people have a relapse, I find it difficult to
think I would survive it”
Bitter about life
“Is this the thanks you get for doing everything
and fighting, it’s really hard”
“I’ve lost something that will not come back, I’ve
lost my belief in the future”
faced with but believed that their moment had come. This
aroused fears in them, which reduced their capacity to fight.
CURRENT LIFE
At the time of the interview they were back at work but felt
they really could not cope with it. Although they were in
remission, all were disappointed at not being restored to health.
They did not accept the physical changes and their body
engendered feelings of shame and an unwillingness to allow
anyone to see it, sometimes not even their partner. They had
not recovered physically or psychologically and had not found
a way of living with their remaining impairments. In a psy-
chosocial sense, they had a negative self-image and loss of control
over feelings. This meant they made demands on themselves to
which they were not able to live up. They had poor self-esteem
and found it difficult to withstand psychological pressures and
to control them. They turned in on themselves, hid their feelings,
and felt powerless, which meant withdrawing to avoid con-
frontation with previous experiences. Not involving anyone
else indicated feelings of loneliness and detachment without
personal relationships. They had lost their belief in the future
and their ability to influence their lives. In an existential sense,
they felt scared of the future. The future evoked feelings of fear
of getting the illness again and of dying; this prevented them
from enjoying life. Their expectations of a calm and peaceful
period at the end of an active life had been shattered and they
felt bitter about life. They had struggled through the period of
illness but now thought that it had not been worth the effort.
They had paid too high a price for survival.
 Comprehensive Understanding
and Reflection
Comprehensive understanding is the last phase in the phe-
nomenological hermeneutic process, which involves the reflec-
tive reading of the text as a whole, the first naïve understand-
ing, and the result of the structural analysis and in this study
expanded by the social and medical history as told by the
patient in the interview. In the narrations of the meaning of
lived experience of falling ill with AL or HML, being under
treatment, and of life following this event, 3 themes emerged:
believed in life, fought for it and came through stronger; life
goes on, adapted and found a balance in the new life; and life
was over, felt out of control and lost belief in life. The inter-
preted whole can be understood from the perspective of creat-
ing meaning of living with an extremely life-threatening dis-
ease, meaning being in a profound crisis, existentially and
psychosocially but also physically. In the first 2 themes, the
respondents were able to create meaning and thus make sense
of the situation and integrate the event into his/her life story
in a sensible manner. They were able to create a whole story
out of their life. In the third theme the respondents were
not able to integrate the event of having been through a life-
threatening disease in a manner that made sense to them and
thus it also seemed to be meaningless to survive. At the time of
Lived Experience of Survivors of Leukemia or Malignant Lymphoma
the interviews they were still struggling to make sense of the
whole experience. Perhaps making sense of events does not
necessarily mean that the event is meaningful but that the per-
son integrates the event into his/her life story in a sensible
manner. The narrative mode is one way of approaching and
understanding life and creating meaning into a life situation.19
Results revealed that living through the disease and treat-
ment was a severe traumatic event. Above all, it was an over-
whelming threat to their lives, both physically and existen-
tially, and it could be understood within the framework of
crisis theory.11,20 The traumatic event (falling ill), the aware-
ness that it might be serious, and receiving the diagnosis meant
disorganization for all respondents in this study. The period of
disorganization was severe and continued through the period
of treatment, in some cases to a level where they lost their ori-
entation to reality. They all had severe physical complaints and
experienced increased tension, anxiety, hopelessness, isolation,
anger, doubt, and powerlessness. Thus, the interpretation
implied that all participants were in a state of shock. Their sit-
uation worsened successively because of the gradual break-
down of their physical health engendered by the treatment.
This process went on over a long period, varying from 2 to 12
months. Some put themselves in the hands of the hospital
staff, others were deeply worried, and still others struggled.
This suggests that it is important to base the care provided on
the knowledge that such people are in a crisis. As far as possi-
ble, medical staff should help the patient to reduce physical
problems arising from the illness and the treatment so that the
patients can devote their energy to managing the psychosocial
and existential meaning of the event. Working through a severe
crisis also means reorganization, which entails obtaining a
sense of meaning and putting the experience into the life story
as a meaningful part of it. This resembles the suggestions made
by Kenyon and Randall,19 that the meaning of and nature of
time are connected to our lives as stories; we do restory our
lives to make sense of it, make it meaningful. As stated by
Hydén,12 by listening to people’s stories in a nuanced and care-
ful way, the nursing staff can affirm the patients and help them
to repair or make some sense out of what has happened to
them. Frank13 suggested that part of care giving is to recognize
how patients struggle to reform that part of them disoriented
and damaged by illness.
The findings in this study indicated that the impact of the
disease and treatment might depend on the period of life of the
respondents. Their private evaluation of the entire experience
was interwoven into this. The first group that evaluated its
current situation positively was the youngest and felt that life
lay in front of them, including family, children, and a career.
They decided to fight for, and believed in life. They had every-
thing to gain and fought against all the strains. The second
group was the oldest. They accepted that life has an end, and
appreciated their remaining time. They focused on what they
had done previously in their life, appreciated life, and did not
plan for the future. They felt grateful for what life had given
them up to now. The third group that evaluated its current sit-
uation with bitterness, lost belief in the future. They were
approaching retirement and had just left responsibility for
Cancer Nursing™, Vol. 27, No. 4, 2004 ■ 311
children behind, and started to plan for their own future, (eg,
a new job or retirement and the freedom that would imply).
Their expectations for the future and their plans for their
forthcoming life were ruined. These findings are in line with
the idea presented by Cullberg,20 in that the person’s evalua-
tion of the crisis and the development of the crisis reaction is
dependent not only on the event itself, but also on the period
of life the person is in and the inner, private meaning the event
has. This indicates the importance of judging how events are
perceived and the repercussion perceptions have on people, so
that those who are more affected, or at risk of coming through
the process with a reduced quality of life, can be recognized.
This judgment should include such aspects as expectations
regarding life and the future, but also regarding themselves
and their chances of changing the expectations they have of
themselves.
The results also showed the importance of judging and eval-
uating available social support networks and the capacity to
use them. It seems important to assess the amount, quality,
and types of social support as well as the patient’s ability to
access help for their possibly many different needs. The ability
to deal successfully with the crisis is thought to be dependent
on the person’s social resources.20 In our results, however, the
person’s personal resources to empower themselves stood out as
being important, as well as the availability of a social network.
Those who came out of it strengthened actively used their
social support network. They used the available resources in
terms of family, relatives, friends, fellow patients, and staff for
support. Those who isolated themselves left the experience
with feelings of bitterness and lost their belief in life. Rather,
they tried to be strong on their own. Thus, they did not share
their problems with other people. In an earlier study, some
spouses were interviewed,10 the results revealed that some
spouses were not “let in” by their partners, and thus not
allowed to participate in the ongoing situation. These spouses
felt discontented and powerless without any possibility of sup-
porting their sick partner. It is possible that these were in rela-
tionships with the survivors who, in this study, isolated them-
selves from contact with others. If so, the spouses as well as the
sick partners suffer emotionally from the isolation. There
seems to be an urgent need for a strategy to bring families
closer together and to use this closeness for mutual support.
Caplan21 suggested that emotional equilibrium is usually
maintained by aspects of ego functioning. He described 3
main areas that indicate the state of the ego: reaction to stress;
problem-solving methods; and adjustment to reality. Taken
together, these aspects may explain the variation in processing
and using the social network. In turn, this may explain the
variation among the groups. In nursing care, an important
objective should be to help the patient overcome any personal
difficulties that may hinder him/her in dealing with the crisis,
for example, seeing to it that the patient is able to accept help
or express his/her feelings.
Those people who spoke about the experience with bitter-
ness saw no meaning in the experience and they felt their cur-
rent life was not worth the struggle. They were not able to
leave the experience behind or to integrate the event into their
312 ■ Cancer Nursing™, Vol. 27, No. 4, 2004
lives. Those who viewed their quality of life as improved stated
that the struggle was meaningful and the experience had made
them grow, as a person. The illness had brought a new dimen-
sion into their lives, making it possible for them to leave the
events behind. They had not forgotten, but had converted
their experiences into something positive. In the recovery
phase the disorganization is overcome by the struggle to iden-
tify a reason or a meaning for the disruption in their life. Once
meaning has been given to the event, either positive, negative,
or a combination of the two, reorganization begins.21 A narra-
tive approach may be a useful tool to help in the reorganiza-
tion process.
 Methodological Considerations
The sample in this study included people with AL or HML.
These are different diseases, but from a nursing perspective the
similarities are greater than the differences. Both diseases are a
threat to the patients’ lives and, if untreated, they are fatal. The
treatment in both cases mainly takes the form of aggressive
chemotherapy over a long period of time. The treatment and
its side effects add to an already stressful situation. To provide
high-quality nursing care, it is important to have some knowl-
edge of the impact of the disease and its treatment and to
understand the meaning of the situation for the people
involved.
The study group (n  18) was drawn from a sample of 54
survivors of AL/HML who responded to a questionnaire.2
Among those who did not respond to the questionnaire were
some who gave as their reason for not answering that the expe-
rience had been so difficult and painful that they did not wish
to revive it in their memories. Those who volunteered to par-
ticipate in the interview were possibly those who felt a need to
consider more deeply their earlier or current situation and
who, at the same time, had the strength to talk about their
experience. This might mean that those who were most sick or
had insulated themselves from their experiences were not
included among the interviewees. Therefore, the study may
have produced a more positive description of the experience.
In an interview situation, the content is determined by the
interplay between the interviewer and the interviewee. The
narrative changes according to what is being narrated, even if
the core remains the same.1 Other interviewers may have
drawn out other narratives, which would not have been any
more or less true but simply have reflected the situation from
another angle. A narration brings out problems and possibili-
ties in interviewing that are not visible when attention is
restricted to “question and answer” exchanges.
The researcher’s preunderstanding always influences the
interpretation process.17 This cannot be denied and must be
met by adhering to a strictness of method throughout the
entire research process. This was counteracted by the analyses
being made by the 2 authors together with a skilled oncology
nurse not previously involved in the study. The first author
and the oncology nurse alternately, and independently of each
other, read the texts and then discussed the findings until
Persson & Hallberg
agreement was reached on both the results and the ensuing
analyses. The findings were then discussed with the second
author. To increase credibility, examples of statements are pre-
sented in the tables.
 Clinical Implications
To provide high-quality care for people with AL/HML, it is of
great importance to understand the meaning of the situation
for each person involved. The narrative mode seems to be one
way people make sense of their life situation, this is trying to
obtain a sense of meaning of what has happened to him/her.
Those who made sense of the life situation of having been
through the experience of AL/HML and the treatment came
through stronger or found a balance in the new life. Those
who did not make sense of the situation could not integrate
the event into their life story in a sensible manner. They felt
out of control and lost belief in life. Thus the findings indi-
cated the profound crisis situation the disease and treatment
meant to them and the processing by obtaining a sense of
meaning and thereby coming to terms with the entire experi-
ence. To help a person to narrate his/her situation can be use-
ful for healthcare staff to understand and participate in the
person’s inner story of that event. Story telling can be an essen-
tial step in the revalidation process helping the patients to
overcome the existential crisis of having contracted a life-
threatening disease. To use a complex, nuanced, careful way of
listening and affirming patients’ stories may help the patients
to repair what has happened to them, which perhaps can con-
tribute to a more effective care.
ACKNOWLEDGMENTS
We are most grateful to the patients for their kind cooperation.
We also thank Ms Helene Ekfors for her helpful participation
in the analysis of the interviews, and Ms Patricia Shrimpton,
Umeå University, and Ms Erica Felix for revising the English.
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