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

758
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have had cancer. Terms such as “cancer victim” or “cancer pa- Most of those who have had cancer also are aware that long-
tient,” which were the traditional labels used to denote some- term survival of one type of cancer does not ensure a future
one with this diagnosis, have been all but replaced by the term free from cancer. They recognize that after one cancer has been
“cancer survivor.” This label is now applied not only to those “survived” or “cured,” there is the possibility, if not the increased
who have lived for an extended period of time after treatment, probability, of another type of cancer. In our research, 10 per-
but also includes those newly diagnosed with cancer, those who cent of the long-term survivors had survived a prior, different
are in treatment, and those who have completed treatment and cancer, and 17 percent had another type of cancer after being in
are in remission. This change in language and orientation has remission for the cancer that was the focus of our study. Other
been adopted and promoted by organizations such as the Ameri- research has found that 6–11 percent of all cancers are second
can Cancer Society (ACS) and the National Coalition of Cancer cancers (5). Thus, even with the optimism generated by suc-
Survivors (NCCS). The National Cancer Institute’s (NCI) Office cessful treatment and extended survival, and the corresponding
of Cancer Survivorship defines a survivor as anyone who has focus on survivorship, the reality is that a future free form cancer
survived even one day after diagnosis (1). A somewhat more can never be assumed.
restrictive definition still found in the literature classifies sur-
vivors as “those apparently free of cancer after treatment” (2). Linking survivorship and identity
Taken together, these definitions of survivorship encompass a With the increasing number of cancer survivors in the general
range of individuals beginning with those recently diagnosed to population and the media focus on “celebrity” survivors, a focus
those experiencing recurrence or another cancer. has emerged on the meaning of cancer and cancer survival. Little
and colleagues (2) describe how survivorship and identity are
Long-term survivorship both part of this new “discourse” on cancer as an illness. Once
Most research in psychooncology has, and continues to fo- “shrouded in social silence,” (p. 170) stories of cancer as an ill-
cus on the immediate and short-term effects of cancer, primarily ness now have a place in our culture. They suggest that those
at diagnosis, during treatment, or during the first years after diagnosed with cancer can now “expect some degree of accep-
treatment (3). Therefore, much of what we know about the psy- tance and understanding” and “that surviving cancer produces
chosocial impact of cancer is from research on the earlier stages changes in personal identity” (p. 170). The link between survival
of survival. Bloom indicates that one reason for the relatively lit- and identity is further elaborated upon by Zebrack (6), who as-
tle attention to the quality of life of long-term cancer survivors serts that the cancer experience may “result in the integration of a
is due to recent improvements in survival rates (4). However, new, and perhaps permanent identity” (p. 238) for the individual.
research does document that cancer survivors continue to ex- The general public’s adoption of the orientation and language
perience health problems, psychological distress, and social life of survivorship has implications for the way survivors view
disruption even decades after diagnosis and initial treatment (4). themselves. Social theorist Charles Horton Cooley (7) pointed
As a result, there has been a growing interest in long-term sur- to the fact that the individual’s sense of self is formed in the
vivors as they age. “looking glass” that society provides. His colleague, George
It has been suggested that survivorship can be divided into Herbert Mead (8), further specified how this occurs with the in-
three temporal stages: acute, which includes treatment and the dividual amalgamating those reflected views of society through
first year afterwards; extended, which includes the period from the formation of the “generalized other.” As society in general
the first through the third years after treatment when recurrence has shifted its view of cancer from that of a death sentence to a
is most likely; and permanent, which extends from the third year survivable, life-threatening illness, individuals diagnosed with
throughout the remainder of life (4). The Office of Cancer Sur- this illness are provided with a new way of viewing themselves
vivorship at NCI, which was established in the late 1990s (5), and their future.
has defined long-term survivorship as beginning 5 years after Identity theory has emerged as a useful framework in under-
diagnosis. The NCI’s use of the 5-year mark is consistent with standing the process of adopting illness-related identities and
the way survival statistics traditionally have been reported as the implications that these identities have for the self (9). The
“5-year survival” rates. It also is consistent with the view com- focus of identity theory, as it was originally developed, is on sta-
monly held by the general public that those who have survived bility and change in identity over the life course and the relative
for 5 years have a relatively high probability of permanent sur- importance that individuals attach to specific identities (10–13).
vival or “cure.” Significant life-event stressors, such as a life-threatening illness,
Of course, professionals working in oncology, and most pa- may result in changes in the relative importance of specific iden-
tients, know that no specific time frame is indicative of a “cure” tities, referred to as the identity salience hierarchy. Changes in
from cancer or a guarantee of “permanent” survival, as there the salience of specific identities, in turn, can alter aspects of
is considerable variation in the period where recurrence likely one’s self concept. Specific identities that have been central to
is dependent on cancer type and tumor characteristics. Further, the individual’s sense of who they are (e.g., career, professional,
since many forms of cancer are chronic, yet-highly-survivable, or family identities) may diminish salience in the face of these
the definition of successful treatment has shifted toward maxi- illness stressors and may be replaced by illness-related identities.
mizing the quality of life of all individuals who have been diag- Cancer is one form of life-threatening illness that has the
nosed with cancer for as long as they are alive. potential to alter the salience of specific identities, and replace

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primary identities with those related to the illness. Zebrack (6) cancer (19). Defining oneself as a survivor, either in the limited
quotes a cancer survivor who says, “There was cancer on the context of cancer or more broadly, may be a positive orientation
one hand and everything else in my life on the other . . . the fact that is transferable to other illness or life event stressors. The
that I was a patient with cancer . . . outweighed the rest of my survivor identity may contribute to successful aging through
life . . . it’s never not there” (p. 238). Giles and Johnston (14), the development of coping strategies that can be used to adapt to
recognizing the potential of cancer to impact core identities, other normative stressors of aging, or help to place other stressors
indicate that the loss of identity experienced by cancer survivors in perspective.
may be similar to that of dementia patients. Another way that identity theory is relevant to cancer sur-
One way that cancer, especially sex-specific cancers such as vivorship is that it suggests that highly salient identities demand
prostate and breast cancer, can affect core elements of the self is a corresponding commitment to specific behaviors related to that
through gender identity. For men, prostate cancer, “challenges identity. For example, the adoption of the survivor identity may
the way they experience their masculinity” (15). Thorne and foster pragmatic health beliefs and behaviors that can contribute
Murray (16) point out that women diagnosed with breast cancer to healthy lifestyles and overall wellness (21). These may in-
are presented with, “a confusing array of ideologies,” and that the clude important health protective behaviors such as compliance
resulting impact on the gender-related social construction of this with medical care recommendations, symptom monitoring, and
disease may impact how they make decisions about treatment general health maintenance.
options. The survivor identity also may come into play in the area of
Identity theory posits that another way that an individual’s maintenance of valued roles and activities. During active treat-
sense of self is altered by major life events such as cancer is ment, cancer patients often experience a loss of, or strain in
through impaired role performance. Medical sociologist Arthur important roles and activities, including work, family, hobbies,
Frank’s (17) autobiographical account of surviving both a heart and recreation. For long-term survivors, the ability to return to
attack and cancer discusses how illness can damage one’s sense effective and enjoyable participation in these valued roles and
of self through the strain placed on important roles and the as- activities may be identity enhancing and represent an important
sociated self blame. The disabling effects of cancer treatment, aspect of the survivor’s quality of life. This may be especially
if not the disease itself, can have a major impact on how well an important for older adults who have faced other role losses that
individual performs roles that are central to his or her identity, are traditionally associated with aging.
such as family roles (e.g., spousal intimacy, child/parent care) or Finally, another area in which the adoption of the survivor
work performance. Thus, one of the major challenges faced by identity may have important implications is the psychological
those diagnosed with cancer is, “the work of living with cancer” distress that survivors experience. Specific forms of distress that
(18) (283). may be linked to identity are cancer-related health worries, anx-
The identity-relevant aspects of cancer discussed above are iety, and depression. Research has shown the persistence and
those that pose significant challenges for the individual with importance of cancer-related worries (22) and an empirical link
this illness. While cancer can be viewed as an event that assaults between cancer-related health worries and anxiety and depres-
prior perceptions of self and may impair role performance, it al- sion (23). Viewing oneself as a survivor may buffer the individual
ternatively can be viewed as an opportunity for personal growth from a preoccupation with cancer-related worries and, thus, play
and improved well being (19) and can motivate reintegration of a role in reducing anxiety and depression.
the self. Terms such as self-transformation (19) and reformula- From the above literature, it is clear that there is a growing
tion of identity (20) also have been used to describe the cancer interest in expanding conceptualizations of the ways that cancer
experience. This process is exemplified by the comments of the affects important aspects of identity and how these, in turn, may
survivor Zebrack (6) quoted above who goes on to say, “for a affect the quality of life of survivors. While empirical investiga-
long time now, maybe four or five years, cancer has felt like it’s tion is just beginning to emerge in this area, it is clearly a fruitful
been part of a quilt . . . one of those patches is cancer” (p. 238). area for future research.
This comment suggests with the passage of time, the cancer ex-
perience can be integrated into larger life experiences. At this Our research on survivorship
point, illness and patient-related identities may yield to feelings With the above as background, the remainder of this article re-
of kinship with those who have survived cancer and have since ports research results on identity-relevant aspects of survivorship
gone on to lead relatively normal and healthy lives. derived from 2 of our studies. The first was a National Institute
on Aging (NIA) funded Pepper Center pilot study conducted
Adopting the survivor identity in 1994. It had a relatively small (N = 50), community-based
Adoption of the survivor identity may be an important step in convenience sample of older adults. Respondents experienced a
the process of identity transformation or reconstruction. It can range of cancers and had survived for a period of from 1 to 40
provide alternative identities to replace those defined by illness years at the time of interview, with 60 percent having survived
or those threatened or lost to illness. As such, it has the potential less than 5 years (24). This will be referred to as our “early
for a number of positive consequences. Research has shown that study” in the discussion and tables that follow.
cancer survivors who make “a positive transformation” have The second is a larger (N = 321), ongoing longitudinal study
higher self-esteem and well-being than those who have not had 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.

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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
Figure 1. Survivorship identity.
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
Because respondents could endorse any of the possible iden- from surgery and was alive.”
tity labels, the categories were not mutually exclusive. In the It is important to note that clinical staff played a role in gen-
early study 26 percent identified themselves as both victim and erating a survivor orientation for some, either by providing spe-
survivor. In our ongoing study this was reduced to 11 percent, in cific information or by instilling confidence in their abilities.
part because fewer respondents endorsed the victim label. How- Survivors made comments such as, “I’m sure my doctors did a
ever, the fact that both identities were endorsed suggests the good job,” and, “My physician was very optimistic, [and I] felt
ambivalence and uncertainty that this disease creates in some the doctor was committed,” or, “[I had] very good doctors.”
individuals. Social scientists recognize that the process of participating
Those respondents who identified as survivors were asked in a research study has an effect on a respondent’s outlook and
when they adopted this identity. In our early study 60 percent we have had a sense that this occurred in some cases. About 80
indicated that they adopted this orientation by the time treatment percent of survivors indicated that our interview was the first
had ended, compared with 40 percent in the ongoing study. The time that some one asked them about their illness experience, or
remainder adopted this identity later in the illness experience. was willing to listen at length and let them “tell their story.” Frank
In our early study 10 percent adopted this identity during the (26) suggests that a chance to formulate and express an illness
period 2–4 years after treatment and an additional 14 percent narrative is essential to healing for those who have endured a
at or after the 5-year anniversary. In our ongoing study some serious illness.
respondents adopted the survivor orientation as early as from It is important to note that we were careful throughout the
6 months to one year after treatment (4 percent and 8 percent, research process not to refer to our respondents as “survivors”
respectively). In the ongoing study the importance of the 5-year when we talked with them during our screening calls, in the
anniversary is clear, with one-fifth of respondents indicating that literature we provided them, or during the interview itself. How-
this was the time period when they felt that they were a survivor. ever, it was inevitable that being asked to participate in this type
An additional 4.6 percent adopted the identity at the 10-year of project would affect how many thought about their cancer ex-
anniversary. Overall, it appears that most individuals adopted perience. One respondent indicated that she began to identify as
the survivor identity relatively early in the illness experience, a survivor “When they asked me to take part in this [research].”
and in most cases before the 5-year anniversary.
Importance of survivorship
Factors that encourage identification
As noted in the introduction, identity theory suggests that in-
as a survivor dividuals place identities in a hierarchy that reflects the salience
In our ongoing research, we recorded the responses of a num- of each identity they adopt. In our research we wanted to see
ber of respondents who volunteered information on what trig- how important identifying as a survivor was to participants (see
gered their feelings of being a survivor. This narrative informa- Figure 2). To assess this, respondents in both the early and ongo-
tion serves to illuminate the quantitative data that is the bulk of ing studies were asked the extent to which they agreed with the
the interview content. statement, “Being a cancer survivor is an important part of who I
One pattern of responses uncovered in the narrative data was am.” Approximately four-fifths of respondents in the early study
the role that a reduction or cessation of cancer symptoms or and two-thirds in the ongoing study indicated that they agreed

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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
Figure 2. Cancer impact on identity. 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
or strongly agreed with the statement. This would appear to in-
an active approach to dealing with this illness. That research also
dicate that this identity was important for how they have come
found that the timing of adopting the survivor identity was as-
to view themselves since their diagnosis.
sociated with the level of distress reported. Those who adopted
How survivors feel that they are viewed the survivor identity relatively early in the course of the ill-
by others ness demonstrated significantly lower levels of anxiety (r = .41,
p < .01) and depression (r = .47, p < .01) at the time of our in-
In our ongoing study we asked a number of questions about terview. Early adoption of the survivor identity was also signif-
how survivors perceived that they are viewed by others. Given icantly associated with higher levels of self-esteem (r = −.30,
the common perceptions that cancer is a stigmatizing illness, p < .01).
and that stigma is linked to identity and self, several questions Our ongoing study has taken a more comprehensive look at
that reflect stigma were asked. Only a relatively small propor- the factors correlated with survivorship and distress outcomes.
tion of survivors, about one in 10, agreed with the statements, We found that African Americans were more likely to report con-
“I sometimes feel I am not a whole person,” or that, “I am con- cerns of not being a whole person (r = .15, p < .01) and that they
cerned how others view me.” This suggests that most older-adult, were more concerned with how others view them since having
long-term survivors do not feel stigmatized by their cancer his- cancer when compared to Whites (r = .27, p < .01). However,
tory and only a few are concerned about the perceptions of others. these concerns apparently do not translate into lower levels of
However, when we asked about their propensity to disclose their self-esteem than Whites (r = −.03, NS).
cancer history to friends, nearly 6 out of 10 indicated that they Optimism, a trait-like dispositional characteristic (28), dis-
had not told others they had had cancer. plays the most consistent relationship with the identity-related
factors. Respondents with higher levels of optimism were less
Factors associated with survivor identification likely to view themselves as a victim (r = −.17, p < .01), less
In both of our studies, we have correlational data that indicate likely to view themselves as a patient (r = −.13, p < .05), and
which factors are associated with adoption of the survivor iden- more likely to view themselves as an ex-patient (r = .14, p < .05).
tity, the timing of that adoption as well as other identity issues This indicates that optimism can be linked empirically to sur-
and aspects of psychological distress. The complete correlation vivors placing the cancer experience in perspective and mov-
matrix from the earlier study is available in Deimling, Kahana, ing on. More optimistic survivors also were less likely to view
and Schumacher (24), and the correlation matrix for the ongo- themselves as “not a whole person” (r = −.19, p < .01) and less
ing study is available upon request. A number of the statistically likely to be concerned about “how others view them” (r = −.18,
significant associations are reported below with Pearson’s r co- p < .01). While the magnitude of these associations is quite mod-
efficients and related p-values provided. Given the statistical est, taken together they suggest that an individual’s response to
power that our sample size provides, some of the coefficients cancer is at least partly linked to his/her personality or trait-like
that achieve statistically significance are quite small. This needs characteristics.
to be kept in mind in interpreting their substantive importance. A number of cancer/treatment characteristics were associated
With regard to measurement, the survivor identity measures with identity-related factors. First, compared to those who had
presented here were created by us specifically for our early study breast or colorectal cancer, those who had prostate cancer were
and also have been used in the ongoing study. The measures that less likely to identify as survivors (r = −.22, p < .01). Having
are examined as correlates of these identity-related factors, for more types of treatment was weakly associated with adopting the

Survivorship and Identity 763


Downloaded By: [Canadian Research Knowledge Network] At: 02:00 12 May 2008

survivor identity (r = .13, p < .05). Having had chemotherapy as ex-patients rather than as victims or patients. Most also view
was weakly related to adopting the survivor identity (r = .11, being a survivor as an important part of who they are, do not see
p < .05) while having radiation therapy was weakly linked to themselves as less whole, and are not overly concerned about
not adopting the survivor identity (r = −.13, p < .05). how others view them. In other analysis of our data (not shown),
Symptoms experienced by respondents, both those that oc- even those who have had a recurrence or a second cancer share
curred during treatment and current symptoms attributed to these positive endorsements of survivorship.
cancer or its treatment were correlated with a number of the This fact that most individuals in our research voice a strong
identity-related factors. First, respondents who experienced a survivorship orientation may be, at least in part, a result of the
greater number of symptoms during treatment were more likely positive and optimistic orientation portrayed in the popular me-
to identify with being a cancer patient (r = .25, p = <.01). Sec- dia as a result of the work of organizations such as the National
ond, those who currently had more cancer-related symptoms Coalition of Cancer Survivorship, The Lance Armstrong Foun-
were less likely to identify as survivors (r = −.20, p < .01), more dation, the American Cancer Society, and the Office of Cancer
likely to identify as patients (r = .25, p < .01), and more likely Survivorship at NCI. Comments made by our respondents sug-
to feel that they are not a “whole person” (r = .14, p < .05). gest that the media has played a role in disseminating this
From this, it is clear that ongoing cancer-linked symptoms have orientation.
a continuing impact on survivors’ sense of self. It is clear from our research and that of others, that how an
The associations found among the identity-related character- individual copes with cancer is linked, at least in part, to more
istics provide insight into the ways different aspects of identity trait-like dispositions such as optimism and self-esteem (27, 34).
are interrelated, and how more general measures of identity, To the degree that these factors are enduring traits, they may be
such as self-esteem, are correlated with cancer specific identity- less amenable to clinical intervention. However, when the prog-
related outcomes. First, respondents with lower levels of self- nosis an individual receives suggests that survival is a realistic
esteem were more likely to report feeling that they are not a outcome, clinical staff can work with cancer patients undergoing
“whole person” (r = −.28, p < .01), and being concerned with treatment and those receiving follow-up testing to encourage a
how others view them (r = −.19, p < .01). Second, survivors survivorship orientation. The survivorship orientation may help
who continue to identify as patients were less likely to feel they to promote healthy lifestyles that may, in turn reduce the odds of
are not a “whole person” (r = .17, p < .01) and more likely to recurrence or the occurrence of other cancers. The survivorship
identify as a survivor later in the illness experience (r = .17, orientation also may encourage symptom monitoring that may
p < .01). Those who took longer to adopt the survivor identity enhance early detection and diagnosis of either a recurrence or
were more likely to view themselves as “not a whole person” new cancer.
(r = .20, p < .01). This article largely has focused on the positive aspects of
There also are several statistically significant associations survivorship. However, it is important to recognize that there
between identity factors and distress. Lower self-esteem was a are several potential problems that may be associated with an
relatively strong correlate of higher levels of anxiety (r = −.28, overemphasis on survivorship. Individuals with advanced can-
p < .01), hostility (r = −.15, p < .05), and depression (r = −.39, cers or those whose cure or long-term survival is unlikely may
p < .01). Further, those who identified as cancer victims demon- become alienated by the display of the survival orientation by
strated higher levels of hostility (r = −.13, p < .05) and those other patients or clinical staff. Even among those who are likely
who continued to identify themselves as patients reported higher to survive cancer, the expectations created by the survivorship
levels of hostility (r = .17, p < .01) and depression (r = .14, orientation risks creating a “blaming the victim” situation where
p < .05). individuals feel overly responsible for their own survival. This
may become especially problematic for individuals who experi-
DISCUSSION AND CLINICAL ence a recurrence, which reduces the probability of permanent
survivorship. Some individuals may then feel that treatment fail-
IMPLICATIONS
ure, if it occurs, is somehow “their fault.”
As Bloom (4) notes, many, if not most, long-term survivors of These exceptions aside, our research and that of others we
cancer not only survive, but also thrive. Our previous research reviewed suggests that the emerging discourse of survivorship
provides additional support for this, demonstrating that most has already had an impact on the way that those diagnosed
long-term survivors do not report high levels of physical impair- with and treated for cancer view themselves and their future. To
ment or pathological levels of psychological distress (23, 25). the degree that a survivor orientation is associated with better
At the same time, it is important to note that our prior research mental health outcomes and encourages health promotion and
shows that a relatively small proportion of survivors do report appropriate symptom monitoring, it can reinforce the effects of
serious health and psychosocial problems that are linked either the quality medical care provided by clinical staff. The support
to the cancer itself or the effects of treatment. Their current of clinicians encouraging this orientation, where it is appropri-
health not withstanding, most older adults who have survived ate, may further enhance the quality of life of individuals who
cancer for at least 5 years, identify as cancer survivors and/or living with a history of cancer.

764 G. T. Deimling et al.


Downloaded By: [Canadian Research Knowledge Network] At: 02:00 12 May 2008

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Survivorship and Identity 765


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- Most of the participants were men (n = 8), with less than
flating religion with spirituality, while pointing to the half being women (n = 4) and suffered from a range of hae-
richness, complexity, and contradiction that individuals matological malignancies including chronic myeloid leu-
bring to their meaning-making. The findings provide kaemia (n = 5), acute lymphoblastic leukaemia (n = 2),
important insights on the interpretation of spirituality for acute myeloid leukaemia (n = 2), multiple myeloma
a group of individuals surviving the confrontation with (n = 1), non-hodgkin’s lymphoma (n = 1) and Ewings sar-
death caused by a life-threatening illness. 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
THE RE SE A RC H
8 years since they had been diagnosed (3 years, n = 1;
The research project represents the first time that substan- 4 years, n = 1; 5 years, n = 3; 7 years, n = 3; 8 years, n = 2),
tial funds have been provided by a major Australian cancer although for two participants the time since diagnosis was
research organization for work on spirituality. The study, much longer (12 years, n = 1; 15 years, n = 1). The majority
funded by the Queensland Cancer Fund for 2 years exam- have undergone at least one bone marrow transplantation
ines the relevance of the notion of spirituality and spiri- (n = 8), and all have experienced extensive chemotherapy
tual pain for hospice patients (Arm A) and their carers and radiotherapy. More than half of the participants had
(Arm B), and the health professionals who look after them undergone 5 years or more post-treatment (5 years, n = 3;
(Arm C), as well as cancer survivors (Arm D) and patients 6 years, n = 2; 9 years, n = 1; 10 years, n = 1), an important
undergoing curative care in a hospital setting (Arm E). The point in time that signals cure in oncology terms. How-
findings reported in this paper are presented from the arm ever, five of the participants were still under the 5-year
of the research that explores aspects of spirituality in rela- post-treatment (1 years, n = 1; 3 years, n = 2; 4 years,
tion to survivors (Arm D). n = 2).
The participants in this arm of the study were enrolled
through the support worker at the Leukaemia Foundation
Methodology
of Queensland (LFQ). Prospective participants were con-
tacted and told of the study and invited to participate in The meaning survivors are making from their illness
an interview. All of the participants contacted agreed to experience has been documented through qualitative
participate (n = 12), giving a participation rate of 100%. research using an open-ended interview with each partic-
Participants were informed of their ethical rights (such as ipant. The interviews were conducted by a psychosocial
informed consent, confidentiality, right to withdraw) researcher with a counselling background, a track record
before agreeing to participate and a written consent was in spirituality research, and experience for many years
obtained prior to the interview. The university ethics working with families coping with a member with a hae-
committee has approved the study and the ethics com- matological malignancy. The time and location of the
mittee has ratified project descriptions and consent interviews were of the participants’ choosing. The partic-
forms. 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-
Target population
rience, in your own words and in your own way, from the
All of the participants have been diagnosed with a haema- time you became aware that you were ill? How has that
tological malignancy, which are cancers of the blood and changed how you see the world and what you believe is
blood forming tissues such as the leukaemias, lymphomas important?’
and myelomas (McGrath 2001b). Patients in these diag- The interviews were audio-recorded and transcribed
nostic groups face a potentially life-threatening condition verbatim. The language texts were then entered into the
and undergo risky, aggressive, invasive treatment proto- NUDIST computer program and analysed thematically. A
cols, including bone marrow transplantation, total body phenomenological approach was taken to the recording
irradiation and high dose chemotherapy, that extend over and analysis of the data. All of the participants’ comments
lengthy periods of time (McGrath 2000). Consequently, were coded into free nodes, which were then organized
this group of survivor would have experienced a potential under thematic headings. The coding was established by
confrontation with death both at the point of diagnosis of an experienced qualitative researcher. A second investiga-
their life-threatening condition and subsequently during tor for the project reviewed and validated the coding.
their risky high-tech treatments. There was complete agreement on the coding and emer-

228 © 2004 Blackwell Publishing Ltd, European Journal of Cancer Care, 13, 227–237
Reflections on serious illness as spiritual journey

gent themes. There were 75 free nodes created for the full Because my white cell count was so high, some-
analysis of the survivors’ transcripts, of which the 12 thing should have happened. So I was being looked
directly related to the topic, ‘Illness as Spiritual Journey’, after. (Is that a notion of being looked after by a God
are presented here. or from a religious point of view or not?) No, not
As inductive, phenomenological, qualitative work, the really, not really.
reporting of findings is based on a commitment to the par-
ticipants’ point of view with the researcher playing the
Confrontation with death forces one to explore life
role of co-participant in the discovery and understanding
of what the realities are of the phenomena studied (Streu- A significant factor seen as instigating the ‘journey’ is the
bert & Carpenter 1995; Crombie 1996; Greenhalgh & Tay- confrontation with death that eventuates from being diag-
lor 1997; Holloway 1997). Thus, a narrative account nosed with a life-threatening condition. The survivor is
dominates, with a clear separation between the presenta- made acutely aware of the fragility of life and their own
tion of the exact words of the participants in the findings mortality, with the consequence that they are challenged
section and the interpretation in the discussion section to think closely about the meaning and purpose of their life.
(Grbich 1999). For economy of presentation the selected
I guess to a certain extent you are no longer bullet-
nodes have been organized under categories that, when
proof. You realize your mortality.
juxtaposed, build an outline of the issues (Marshall &
I guess going through the leukaemia and facing your
Rossman 1995; Coffey & Atkinson 1996).
mortality, I think you are forced to sort out for your-
self what you believe and you go through ‘why?’ and
FIN D IN G S that forces you to work out what you really do
believe.
Caveats to the following discussion
I guess it’s also a lot more realistic too. I don’t sort
One important caveat to the following discussion is that of live in a dream world and I guess I am very much
the present medium for expressing the insights provided aware now of things that can happen.
by the participants in the research is that of the written/
The confrontation with such fragility is not only from
spoken word. This is limited, for as one participant noted,
the illness but also from other patients they meet during
‘there is so much that happens during a transplant that
visits to the hospital,
you can’t even put into words’.
All of the participants spoke of their experience with I was sitting in the waiting room and this figure
the illness and its treatment using the language of a spir- walked in and I thought he looked familiar (it turned
itual journey that had direct consequences for their per- out to be old friend) we got talking . . . they buried
sonal development and the meaning they are making out him in early January and that was a bit of a shock to
of life. However, the description of the spiritual journey me because he was getting better and then all of a
was set in the context of clear statements by most of the sudden.
participants that they were not religious and did not nec-
Where the survivor had a meaningful framework, prior
essarily have a belief in a God or an after-life. Thus, there
to the diagnosis, that was based on an appreciation of the
was within the text a ‘non-religious contradiction’ where
finality of life and a strong sense that life has reason and
individuals were making references to feeling protected,
purpose, then the confrontation affirmed these beliefs and
being chosen and a finding sense and purpose in life, but
facilitated the transition to survivorship.
without acknowledging a belief in a higher being or reli-
gion. The data with regards to the contradiction is com- (You already had a framework for making meaning
plex and fully explored elsewhere (McGrath 2001c, 2002), that wasn’t affected by the illness?) Yeah, yeah, well
but needs to be acknowledged in the beginning of the pre- as I said I’ve always felt that we’re all put here for a
sentation of the data on the spiritual journey in order that reason. To do something for somebody . . . I did have
the fullness of the secular nature of the statements can be a framework. Well I guess it focuses you more, having
appreciated. Typical examples of the ‘non-religious con- the illness and the threat. When you’re diagnosed
tradiction’ include, you’ve got the threat of death – an early death – the
question mark is when.
I did pray when I was going through the transplant.
But I didn’t know whom I prayed to. But I did pray. For others the meaning-making develops over time
(And did it give you comfort?) Not really. around the following notions.

© 2004 Blackwell Publishing Ltd, European Journal of Cancer Care, 13, 227–237 229
MCGRATH

Everything happens for a reason something ultimately good is going to come out of
this. I don’t know. . . .
A spiritual notion of causation that surfaced in the con-
Because in my own mind I wasn’t going to die. Not
frontation with death is the idea that everything in life
at that stage because I was getting treatment and at
happens to the individual for a reason,
that stage the side effects hadn’t kicked in.
Everything happens for a reason . . . yeah I am a big
Some of the participants could relate a vignette of a par-
believer in that.
ticular point in time when the feeling of being chosen and
There’s something I’m here to do, because the
protected came over them,
amount of death I’ve seen in the last 5 years should
probably have made me different or harder but it It was a moment, because I was diagnosed and then
hasn’t and I do believe there is a reason. . . . every- we drove to the hospital . . . the relatives came . . .
thing happens for a reason but whether that is spiri- they were preparing me for the bone marrow biopsy
tuality I don’t know. 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
Chosen/saved for a reason alright’. And that is what I remember at that time.

Based on the idea of spiritual causation, for some of the


participants the confrontation with death became associ- A journey for ever
ated with a sense of being ‘chosen’ to undertake the illness
As the spiritual journey is based on a life-threatening ill-
journey,
ness and is thus not time-limited, it consequently extends
I guess I did decide that it . . . there is definitely a for the full life of the patient. As the following participant
power there and then in my case . . . I chose that it states, the challenge is then how the individual chooses to
was God. But I do believe that everyone, not every- deal with the journey,
one, but people believe that there is a power to be, or
It’s forever, I think. You know, sometimes I’ll say,
something, and in my case, I decided that there was
when is this ever going to go away? And we both
a God and he chose me, I guess to go through this and
agree, it’s never (laughs). You know its always going
the way it happened I believe I was meant to survive
to be there. It’s just how we choose to see it, and
because of the way it happened.
handle it and deal with it, yeah.
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. Spirituality appeals

The sense of being chosen was not only reflected in Participants indicated that a spiritual approach to the
the opportunity to live and embrace the spiritual jour- illness/treatment experience was helpful and provided a
ney of illness, but was also expressed as being chosen to way of viewing the experience as a new and positive life
die, phase,

I did struggle a lot with the second transplant, with (Spirituality) probably appeals to me more ‘cause
this idea of um, maybe I’m meant to die. See it failed, um . . . like you can remember how things are when
its failed the transplant failed maybe the universe your life is good and you feel energized and when you,
wants me to die. when you’re coming out of an illness or a just a period
when you’re really weak . . . you kind of have this
The sense of being chosen was accompanied by a sense
feeling that everything’s going to be okay. But at the
of being protected and that things would work out favour-
same time it is a struggle you are kicked around a lot.
ably in the end. This was noted as a feeling or awareness
But it (spiritual feeling) is reassuring that its like
rather than an intellectual thought,
you’re starting over again, I suppose.
I just had this, I don’t know, this awareness or this
something come over me. No, its going to be really
Too scary for there not to be a spiritual journey
tough, it’s going to be really hard and it’s going to
probably be worse than I could every imagine, but One participant spoke about the fear associated with the
yeah, I think it is going to be alright. Yeah, and I think illness and treatment and the consequent spiritual com-

230 © 2004 Blackwell Publishing Ltd, European Journal of Cancer Care, 13, 227–237
Reflections on serious illness as spiritual journey

fort that is gained for conceptualizing the illness experi- eventually will, like say I meet someone that I really
ence as a spiritual journey, like, then the only way that would have happened is
to have been wherever I am at the time or to have
It think the plan has already been mapped out and I
gone through everything.
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 Seeing the illness/treatment as a challenge
your own, oh, its too much. It is bigger than me it is
Participants used the word ‘challenge’ as a key concept in
bigger than me so you almost have to hand it over.
their thinking about the illness and treatment experience,
Other participants reinforced the idea that the emotion
I was thinking deep down I knew that I was going to
of fear accompanies the journey,
beat it and I saw it as a bit of a challenge.
for some reason that evening I took on all the nega- It was like a challenge and I was going to beat it,
tives. I just took every negative and I decided that cause that how I’d sort of grown up in life. And when
night that I was going to die . . . I started crying and I the doctor told me that it was a bigger risk to have
was a huge mess. I freaked out majorly and wanted to the transplant than not to have the transplant I opted
postpone the transplant. to go for the transplant cause it was a challenge.
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
Need to take responsibility for the journey
are not great, but I mean of course I’m going to fear
death . . . I think my biggest fear is that something An important aspect of seeing the illness as spiritual jour-
will happen to my family more than to me. ney was the need for the individual to take responsibility
Oooh, I was just frightened of dying . . . it was just for contributing in some way to the cause of the illness.
the fear of dying. It is that uncertainty thing . . . it is
you can’t . . . I don’t want to blame anyone for my
the process of dying and knowing that you are dying.
illness . . . so it is just a big kick in the bum for me
to sort things out and get healthy. There’s no use
Need to do the journey blaming anyone. So yeah it is my responsibility
. . . probably due to my lifestyle and my decisions, so
Participants indicated that, although the journey was
therefore its my responsibility to change.
uninvited and unwelcomed, there were very positive out-
The pressure and the stress was coming in again
comes that they would not have experienced if they had
and the late hours were coming in and I was managing
not been forced to undertake the spiritual journey. There
my own staff and it was a huge office . . . and my
was a sense in which the insights and life experience pro-
manager said he could see it happening again.
vided by the spiritual journey informed who they are at
this point in time and thus would be determinant of their This is echoed in the consequent need to take respon-
future direction and achievements, sibility for embracing the spiritual journey and making
the personal changes necessary to ensure a successful out-
All this exploring I’ve been doing its something I
come. For these participants a key ingredient in the spir-
didn’t do prior to getting too ill. So its all you know
itual journey is the process of ‘owning’ the problem rather
. . . change yeah . . . a different period of my life.
than delegating responsibility to other people or other
I don’t believe I needed to go through it . . . there
factors,
would have been a way for me to gain the information
that I’ve got than having to go through that. But at Mum was like perfect. She was there the whole
the same time I guess to really actually think the way time . . . it got to one point where she was there all
I do now, I needed to go through that. And the other the time and it was getting too much for me and I
thing it comes down too is that anything that happens actually told her I want to do it myself. That was I
to me for now on, that’s like good, I had to, I believe think the point where everything changed for me.
that the only way that would have happened to me is That is where I sort of went right . . . I can’t actually
having gone through my past. give an exact date but I can remember . . . and I just
Like I don’t believe that I would have got to the said, mum I have to do this myself now. I have to. I
same point if I hadn’t been sick so . . . when I get to think that was, to me, really the turning point for
that positiveness, when I get to that which I know I everything.

© 2004 Blackwell Publishing Ltd, European Journal of Cancer Care, 13, 227–237 231
MCGRATH

Making sense of the illness time to have a transplant . . . I just thought the dis-
ease was pretty established like when we found it.
As the participants reflected on their own contribution to
And therefore there was going to be a lot of work to
the illness, they provided many explanations or theories
kind of beat it.
as to what they believed the cause and effects to be,

I could look back on my past, over the past few years


Proud of how handled the journey
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 Although participants perceived that they did not have a
chance for me to change. choice about entering the difficult and challenging illness
I just drove my body too hard. Everything I did . . . I journey, they expressed feelings of pride in their ability to
did at 100%. Like I exercised hard and I was always deal with the uninvited spiritual journey,
doing things. Not resting enough, think.
Mmm, very proud (of coping) (laughs). Yeah, Yeah.
For me I had a bit of difficulty expressing myself
I coped really well with not being able to have my
and I sort of . . . I think I repressed a few things and
own child . . . Well I’m running my own business now
well that mind–body connection. See I think it was a
that years ago I would never have thought that I’d be.
combination of sort of emotional stuff and pushing
With someone who is newly diagnosed, I just love
my body that lead to the breakdown in my health.
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.
Strategies used by individuals
I think there is a sense of having faced up to a
The spiritual strategies that the participants indicated pretty big task. It’s probably satisfaction . . . it’s not
that they were using to cope with the illness were directly pride in any way. It is sort of like well I didn’t ask for
related to their theories of illness causation, this. But it is sort of like well this has been thrown
up and we’ve gotten through it. You know we’ve han-
You are forced to slow down, forced to . . .
dled it.
I worked on it, for ah, initially I was very expressive
You still feel normal . . . you don’t come out feeling
and I had a few problems with some of the drugs but
like you’ve beaten the world, you come the other side
I tried to get all the stuff out and at the time I was
having coped and feeling satisfied with that.
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 Lucky to have journey
type things but generally it was all mixed up, a lot of
There was a sense in which participants not only felt ‘cho-
stuff. And when that cleared, when things got a bit
sen’ but in some way ‘fortunate’ to be given the opportu-
calmer, yeah, it was, it was a lot better for me (laughs).
nity to undertake the spiritual journey of illness,
I didn’t explain it very well.
Absolutely. I sort of describe it almost as a gift, you
Such strategies were not always successful because of
know. Like (my partner) and I have talked about this,
the disease progression, but this did not detract from the
we think we’re lucky in a way, it is so weird. Like
individual’s faith in the importance of the spiritual activ-
you think back to the horrors and you wouldn’t think
ity and direction,
that you were lucky because of what you went
I did do a fair bit last year when I was in between through and the fact that we can’t have children, but
chemotherapy or in between hospital stays, I sup- we think we’re lucky because we’ve, um, I believe
pose, I tried to do a lot of soul searching. I suppose. I’ve really found a happiness, here. That is transport-
Went to the mountains, and went to Buddhist able. That it’s not a happiness that you get from
retreats and did photography and meditated and extrinsic. . . .
spoke to religious people and all this sort of thing. (And do you think you would have got to that
And I was doing pretty well, I was doing, I was get- space if you hadn’t had this journey?) Probably not,
ting back in interest in exercise. Cycling and doing no, I don’t think so. I think I might have been slightly
weights and a bit of surfing. I was starting to feel heading there. I had the potential but this just really
good. But then I relapsed and there was another 3 or concreted it. I guess. Made it strong. Really get
4 months in hospital and then it was like ahhh it was strong.

232 © 2004 Blackwell Publishing Ltd, European Journal of Cancer Care, 13, 227–237
Reflections on serious illness as spiritual journey

A changed person I would think, ‘no one would do this to somebody


else!’ when you are going through the most painful.
Participants spoke in detail of the positive changes to
their sense of personhood that resulted from having been One consequence of this is that the meaning the indi-
forced to undertake the spiritual journey as a result of vidual is making from the illness journey can vary depend-
their serious illness. The full details of these changes are ing on what they are coping with in terms of the
explored elsewhere and include an increased sense of con- treatment or the disease,
fidence, less dependence on the approval of others, a
It depends how I would have been feeling I guess on
greater ability to give priority to own needs, less judge-
that day.
mental of others, and less concerned about superficial
values. If the pain or physical distress is severe enough it can
cause the individual to loose a sense of meaning in life,

BALA N C IN G TH E P I CT UR E There was a time when I was really sick, about 6, 5,


6 months ago when yeah I was sort of losing
Although participants used the language of a spiritual
. . . losing faith . . . I just felt as though everything
journey in much that they talked about while describing
was a bit too much and I lost sight of the big picture
their experience with serious illness, this was not the
there for a while.
complete story. Throughout the discussions there were
All the treatment has knocked me around a bit, so
many references to doubts and uncertainty, and cynicism
therefore, it’s a bit, ahh, yeah, I’m starting again at a
was an important factor impacting on their spiritual
lower level.
framework.
Examples of physical distress that was significant
enough to alter meaning were Graft Versus Host Disease
Cynical at times
(GVHD), treatment related anorexia, and low blood
A caveat to the notion of viewing the illness as a spiritual counts,
journey is the idea that the survivors did lapse from this
The GVHD is pretty full on . . . I didn’t realize it
framework at times, particularly in troubled times of pain
would hit me so hard it was not a happy time.
and serious symptoms,
It was probably depression but I was really weak I
I don’t feel, I must admit . . . that feeling (spiritual could hardly work I was really thin couldn’t eat. It
feeling that everything will turn out okay) does was just like I couldn’t do anything. I was just in this
escape me still at times. room. So all the high doses of cortico-steroids . . . I
Sometimes you do feel stronger in that belief than was on heaps of different drugs so my thinking was a
others. Sometimes it is, oh there mustn’t be (a tran- bit clouded there for a while.
scendent being in control) who would do this? No Going through the trauma of the transplant you
one would do this to somebody else. Yes, some- were . . . yeh, you look at death, I guess more closely
times when you’re going through the most painful, I (laughs). Because you can feel so down. Down in pain,
guess. um, waiting for your blood counts to improve, so that
You do have your real cynical moments. 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
Pain and difficult symptoms affect meaning-making
next day to see that my blood counts had improved.
An important factor that survivors of a haematological
At times of severe physical distress individuals were not
malignancy have to deal with is the fact that the treat-
able to effectively process or respond to significant exis-
ment can be worse than the disease. Individuals diagnosed
tential issues as can be seen by the following vignette of a
with a haematological malignancy are often faced with
most inappropriately timed personal note,
high dose chemotherapy, total body irradiation, bone mar-
row or peripheral stem cell transplantation. These are She (girlfriend) gave me a note that basically said
invasive, aggressive, often painful, and risky procedures that she couldn’t handle any more and was breaking
that are accompanied by severe side effects. Spiritually the up . . . I read it an went huuuuh. I was on mor-
individual can be challenged to make sense of the aggres- phine, pethidine, whatever they could feed me
siveness of the treatment, cause I was pretty much had all be cut up. and

© 2004 Blackwell Publishing Ltd, European Journal of Cancer Care, 13, 227–237 233
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


DI SCUSSI ON
the experience
As summarized in Fig. 1, the participants reported that
Although participants reported a sense of gratitude for the
the confrontation with death caused through being diag-
journey there was also the notion that there could have
nosed with a life-threatening illness and facing risky,
been easier ways of achieving the same results and a def-
invasive treatments, heightens their sense of the fragility
inite sense that some of the survivors could have done
of life and presents them with the challenge of finding a
without the journey, for example,
framework for making sense of the experience. The chal-
I like the result I don’t like the reason. With the lenge is underpinned by a sense of fear, lack of choice and
positives, I mean I could have done without this. You a desire to live. Finding meaning in the experience by
know, we’re sort of forgetting about what could have using the existential framework of ‘Illness as Spiritual
been and you have got to. Journey’ is seen as providing an important comfort-zone:
I mean we could be in our second house . . . but you as it helps to make sense of a difficult life situation,
could have been killed in a car accident 10 years 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 enriching our understanding of the notion of spiritual-
been given to this aspect of meaning-making. Key ity for survivors of serious illness.
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 CONCLUSI ON
take personal responsibility for the journey and seeing It is exciting to be in the position to report findings on
the process as a challenge. Through such a framework research in relation to spirituality that has been funded by
the illness experience can be viewed in positive terms a leading medical research organization. The initial
such as pride in dealing with the situation and an assess- results of the study indicate that developing spiritual
ment of outcomes in terms of personal growth and a pri- frameworks is an important aspect of the illness experi-
oritizing of values now considered significant. Through ence for survivors. By so generously sharing their reflec-
such a framework individuals can come to feel fortunate tions on their ‘illness journey’ this group of survivors have
in having been forced to undertake the ‘journey’ despite contributed to our understanding of what the notion of
its difficulties. Also participants indicate that such a spirituality means to those who have to face the challenge
view of their illness provides a different ‘lens’ with which of coping with a serious, life-threatening illness. It is the
to evaluate outcomes, which allows them to see a wide hope and expectation that the findings will be part of the
range of positives in what could otherwise be seen as a ongoing process of active listening through research,
very negative experience. where the insights of those touched by illness and dying
However, as Fig. 1 also summarizes, the privileging of help us to understand the nature and significance of spir-
this construction of the illness narrative is only part of the ituality in health care.
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- ACK NOWLEDGEMENT S
tressing physical symptoms and being asked to endure
I would like to thank Ms Emma McGrath, BA, LLB (Hons),
unacceptably aggressive and invasive treatment interven-
AMusA, LMus, for her work as research assistant for this
tions, are all significant factors that challenge the positive
project and Mrs Elaine Phillips for transcribing the audio
meaning-making of individuals. For the purposes of this
tapes.
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 R EFER ENCES
incorporates a struggle with the tension between the spir-
itual pain of meaninglessness and spiritual comfort of the Cawley N. (1997) Towards defining spirituality: an exploration of
the concept of spirituality. International Journal of Palliative
set of beliefs included in the existential framework of ‘ill- Care Nursing 3, 31–36.
ness as spiritual journey’. Coffey A. & Atkinson P. (1996) Making Sense of Qualitative
Spiritual frameworks for making sense of serious ill- Data: Complementary Research Strategies. Sage, Thousand
Oaks, CA, USA.
ness is obviously an area where dichotomous, linear
Crombie I. (1996) Research in Health Care. John Wiley & Sons,
logic has scant relevance. Although the participants New York, NY, USA.
made clear statements that they were not religious Elkins D., Hedstrom L., Hughes L., Leaf J. & Saunders C. (1988)
Toward a humanistic-phenomenological spirituality: defini-
(McGrath 2002) they spoke of their secular, existential
tion, description, and measurement. Journal of Humanistic
framework in spiritual terms that echoed religious Psychology 28, 5–18.
notions of a protective transcendent being/power, a Emblen J. (1992) Religion and spirituality defined according to
meaningful universe and the choice of a moral pathway current use in nursing literature. Journal of Professional Nurs-
ing 8, 41–47.
that leads to positive spiritual outcomes. Clearly there Grbich C. (1999) Qualitative Research in Health. Allen &
is a difference between religion and the spiritual narra- Unwin, Sydney, Australia.
tive of this group of survivors, but the language of differ- Greenhalgh T. & Taylor R. (1997) Papers that go beyond numbers
(qualitative research). British Medical Journal 315, 740–743.
ence is not dichotomous, embraces contradiction, and at
Hodder P. & Turley A. (1989) The Creative Option of Palliative
times, mixed metaphors. However, there is a strong Care. Melbourne City Mission, Victoria, Australia.
commonality in the participants’ statements indicating Holloway I. (1997) Basic Concepts for Qualitative Research.
Blackwell Science, Oxford, UK.
a shared spiritual framework and accompanying lan-
Mahoney M. & Graci G. (1999) The meanings and correlates of
guage that has a comforting, positive value for the survi- spirituality: suggestions from an exploratory survey of experts.
vors. The insights on this framework go some way to Death Studies 23, 521–529.

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Marshall A. & Rossman G. (1995) Designing Qualitative McGrath P. (2001c) Creating a language for spiritual pain through
Research, 2nd edn. Sage Publications, London, UK. research: a beginning. Supportive Care in Cancer 10, 637–646.
McGrath P. (1999) Exploring spirituality through research: an McGrath P. (2002) A quintessentially ordinary spirituality and its
important but challenging task. Progress in Palliative Care 7, relevance to primary health care. Australian Journal of Primary
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Spirituality and Palliative Care (ed. Rumpbold B.), pp. 178– Zinnbauer B., Pargament K., Cole B., Rye M., Butter E., Belavich
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© 2004 Blackwell Publishing Ltd, European Journal of Cancer Care, 13, 227–237 237
© 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- by having patients talk about them once they have gone
tive, of how people who have had acute leukemia (AL) through them. Telling stories is one of the significant ways in
or highly malignant lymphoma (HML) experience the which people construct and express meaning. Thus, their nar-
process of falling ill, of being under treatment, and their life rations may constitute a source for an increased understanding
following this event. One way to explore these experiences is of their experience.1 The knowledge derived from such

From the Department of Health Sciences, Kristianstad University, Corresponding author: Lena Persson, PhD, RNT, Department of Health
Kristianstad, Sweden (Dr Persson); and the Department of Nursing, Lund Sciences, Kristianstad University, SE-291 88 Kristianstad, Sweden (e-mail:
University, Lund, Sweden (Dr Hallberg). Lena.Persson@staff.hkr.se).
This study was supported by grants from the County Council of Reprints: Lena Persson, PhD, RNT, Department of Health Sciences,
Kristianstad, Sweden, and from George Danielsson’s Research Fund for Kristianstad University, SE-291 88 Kristianstad, Sweden.
Hematological Diseases. 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- Falling ill and undergoing treatment for AL or HML may
eating nursing care that will support the patients through the well be understood in crisis theory. A crisis is defined as occur-
disease and the treatment. ring “when a person faces an obstacle to important life goals
People suffering from AL or HML are under great stress that is insurmountable through the utilization of customary
induced by the discovery that they have a life-threatening dis- methods of problem solving. A period of disorganization
ease. The disease and its treatment lead to physical problems, ensues, a period of upset, during which many different
such as energy loss and nutritional problems, which add to the abortive attempts at solution are made”.11 Caplan11 identified
psychosocial burden.2 Although aggressive treatment programs 4 phases in a crisis: impact, disorganization, recovery, and reor-
may be successful, severe side effects are common, including ganization. Although the model is depicted linearly, patients
gastrointestinal problems, infections, and alteration of body can fluctuate between stages. The imbalance between the
image and pain. There may also be changes in interpersonal ability to meet daily living requirements due to compromised
relationships, resulting from the disease, treatment program, functional health status caused by having a life-threatening
and side effects.3 It may be difficult to verbalize these experi- disease and its treatment may take such proportions that it puts
ences while under treatment because of the uncertain outcome the patients and their family in a crisis situation.
and all the physical problems that have to be faced and A narrative approach is one way, for the people involved, of
endured to survive.4 When in remission, the patient probably creating and giving meaning to a crisis. Narratives have been
has a different perspective and a distance to the experiences, used not only to articulate suffering but also to give the sufferer
making it easier to examine them in depth. According to a voice with which to articulate the illness experience.12,13
Mishler,1 casting an experience into a narrative form is the Hyden12 highlighted 5 different uses that can be made of ill-
most fundamental way for a human being to make sense of it. ness narrative: to transform illness events and construct a
Knowledge derived from such stories can provide ideas for how world of illness; to reconstruct one’s life history in the event of
to ease the patient’s burden during the disease and treatment as a chronic illness; to explain and understand the illness; as a
well as process it afterwards. form of strategic interaction to assert or project one’s identity;
In an earlier study, AL and HML patients were found to to transform illness from an individual into a collective phe-
have a reduced quality of life dating from the start of the treat- nomenon. No earlier prior research have been found in which
ment and lasting throughout the first 2 years. Role and social narrations have been used to investigate the life situation for
functioning were the psychosocial areas most affected, while people who have had AL or HML, even though this may be
fatigue, dyspnoea, and sleep disturbances were the most severe one way to develop new insights about these patients’ experi-
physical problems experienced. People who relapsed during ence. Understanding the meaning of such an experience may
the 2 years already had, at the start of treatment, a significantly be helpful in outlining prevention and intervention strategies
reduced quality of life regarding most functional aspects and a for effective and individualized nursing care to help the sick
higher level for most symptoms compared to those who did person through the disease and treatment and to come to
not relapse.5 Long-lasting psychosocial dysfunctioning has terms with the entire experience once he/she has survived. It
been reported, with energy loss, an increased divorce rate, may serve the purpose of understanding the experience for the
infertility, less interest in sexual activities, and problems in person as well as for others and to transform illness from an
returning to work.6,7 A greater appreciation of life,6,8 exempli- individual into a collective phenomenon.12
fied by positive changes in activities, priorities, and relation-
ships9 has, however, also been reported.
In addition, there may be consequences that are under-  Aim
standable from a family perspective rather than from the
patient’s perspective alone. A study including the spouses of The aim of this study was to uncover the meaning of lived
people who have had AL or HML emphasized the interdepen- experience of falling ill with AL or HML, of being under
dency between spouses and their ill partner.10 Three different treatment, and of life following this event.
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
 Methods
family type and the spouse’s personal resources affected how
the crisis was handled and whether or not the spouse came to
Sample
terms with the entire experience. Contentment was related to The sample for this study was drawn from patients currently
spouses included in family type a or b, who had the power to in remission from AL or HML (n  65) at the hematological
ask for what they wanted, took control over the situation, and section of the Department of Medical Care at a central hospi-
used their social network and healthcare staff to meet their tal in southern Sweden, between January, 1989 and September
needs. Discontentment was related to spouses without this 1993. Fifty-four of these individuals had responded to an ear-
resource, included in family type a or c, and they failed to take lier questionnaire that ended with an invitation to participate
control.10 The family structure and the parties’ ability to take in an interview (2). Of the 54, 19 people volunteered for the
control over the situation may also have an impact on the dis- interview, 18 met the study criterion of having been treated
eased person. with chemotherapy and constitute the sample in this study.

304 ■ Cancer Nursing™, Vol. 27, No. 4, 2004 Persson & Hallberg
Participants’ mean age was 57.7 (SD  15.6). The sample was deeper understanding of the texts. The interpretation process
almost evenly split between men (n  8) and women (n  includes 3 phases (1) a naive reading to gain a first under-
10). Four of them had the diagnosis AL and 14 had the diag- standing, (2) followed by structural analyses aimed at explain-
nosis HML. The interviews were performed during 1995. ing the texts, and finally, (3) interpretation of the texts as a
whole. The interpretation of the text was seen as phases in a
Data Collection dialectic process, moving from understanding to explanation
and from explanation to comprehension.17
Narrative interviews were chosen to achieve descriptions of the
The first step in the analysis was a naive reading, aimed at
lifeworld of the participants in order to interpret the meaning
acquiring a sense of the meaning of the texts as a whole, which
of the phenomenon “being survivor of leukemia or malignant
in turn provides ideas for the next phase, the structural analysis.
lymphoma”.1 The interview explored the respondents’ experi-
In the naive reading the impression was that the stories showed
ences concerning their life prior to the diagnosis and during
great variation. Some of the respondents narrated their stories as
the treatment and their present life. The interview also assessed
if the experience had given them a more positive view of life.
their available support and alterations in daily activities. The
They talked about their experiences of the disease and treatment
interview began with the following introduction: “I would like
as a burdensome period, which had given them a new insight
you to please narrate your experience of falling ill, being in
into the meaning of life and had changed them positively. Other
treatment, and recovering. You can start the story where you
respondents’ stories were imbued with a negative attitude to life,
want. You are free to talk about it in whatever way you choose.
as if the struggle against the disease was not worth the price.
I’ll go back and ask you more specific questions in the areas
The naive reading was followed by a discussion between the
where I want to know more.” Thus, the respondents were
researchers of what constituted the core of the text, and how
invited to tell their story in a narrative way from when it began
the subsequent structural analyses should be focused. In this
until the time of the interview. This open-ended introduction
phase, the text was examined in terms of distinct entities. The
was given to encourage them to narrate freely their personal
text was divided into meaning units of 1 or several sentences,
thoughts, feelings, and perceptions about their experiences.
with similar meaning in relation to the aim of the study. Each
The interviews were conducted in the respondent’s home or in
meaning unit was condensed and abstracted to give a formu-
the authors’ office and varied in length between 60 and 150
lated meaning concerning to the meaning of the participants’
minutes, were tape-recorded, and were transcribed verbatim.
lived experiences. The areas that emerged from the text were
the meaning of the lived experience physically/practically,
Analysis psychosocially, and existentially. Thus in the first structural
The analysis was inspired by a phenomenological hermeneutic analysis, each of these areas was analyzed for their meaning and
method developed by Norberg and Lindseth14–16 The method from a time perspective, ie, initially when the symptoms first
seeks to uncover the meaning of the lived experience.17 The emerged to when the diagnosis was given, during the period of
method was applied as a stepwise analysis assumed to lead to a 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 During the Period of
Meaning of Life Time of Diagnosis Treatment In Their Current Life
Life in a physical/ Increasing tiredness and The body broke down Accepted remaining difficulties
practical meaning infections Felt rather well Disappointed at not being restored
Lost control to health
The body felt unreal
Life in a psychosocial Misgivings were justified Looked for strategies Tougher and stronger
meaning Keeping things inside oneself Struggled and gained Positive changes in lifestyle
Like a bolt from the blue control Turned in on themselves, hid their
Insulated themselves from feelings and felt powerless
afflictions A negative self-image and loss of
Trapped and helpless control over feelings
Lost control over their
feelings and reactions
Life in an existential Sensed a threat of death Worked to live Given a new lease of life
meaning Understood the threat of death Believed in life Scared of the future
but did not worry A higher power gave strength Bitter about life
Understood the threat of death The future was unpredictable
and life was turned upside Believed that life was over
down

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, before diagnosis. In a psychosocial sense it meant that their
and the result of the first analysis determines the focus of those misgivings were justified. The difficulties they experienced were
that follow. Thus, several structural analyses may be performed explained and the suspicion that something was wrong was
and their focuses cannot be predetermined. In this analysis, it confirmed. Not knowing had been worse than being given the
was decided to conduct a second structural analysis, as the first diagnosis because they experienced some relief in knowing that
structural analysis indicated that the narrations comprised the now something would happen. Some of them where totally
subthemes identified, but that the pattern varied distinctly. unprepared and experienced the diagnosis like a bolt out of the
The difference seemed to be in the valuing of the experiences blue and were shocked when it was given. Existentially they
retrospectively and in how the entire experience had influ- sensed a threat of death, which meant that they suspected that
enced current life. Three different ways of evaluating the expe- their condition was caused by something serious, possibly life
rience were identified: (a) evaluating the experience as a threatening. This fear was met with a lack of affirmation by
strengthening experience, (b) adapting to it, and (c) viewing people around them because the patient did not look sick.
the experience with bitterness. The variation in their stories Those who were totally unprepared for the diagnosis lost their
stood out and was therefore important to make visible. The footing for a short time and found themselves in a chaotic sit-
interviews were read again and sorted into these 3 groups, uation. They understood the threat of death and life was turned
depending on how the interviewees spoke about the entire upside down. They stood face to face with death and they had
experience. The first author and the oncology nurse did this no strategies for dealing with the situation.
sorting independently of one another. Each interview was then
analyzed in relation to the subthemes. The analysis was DURING TREATMENT
expanded by chronologically reconstructing the medical and
During the period of treatment, their body broke down and
social history as told by the patient and extracted from the
their general physical condition deteriorated drastically. They
interview.18 This was done because meanings are believed to be
lost all energy and enthusiasm, occasionally they lost control,
contextually grounded.1 A scheme reflecting the content in the
both physically and psychologically. During those periods they
subthemes was constructed for each interview. These schemes
were unable to sustain a normal life. The difficulties took over
were then compared for similarities and differences, and 3
and dominated their everyday lives. For some, this happened
themes emerged. The reconstruction from each interview was
to such an extent that they had experiences of unreality with
incorporated into the interpretation in the second structural
psychotic influences, their body felt unreal. In a psychosocial
analysis and the interpreted whole.
sense they looked for strategies, struggled, and regained control.
Finally, in the analysis process, the naive reading and the
They focused on survival and fought against the illness and the
structural analyses were subsumed into an interpreted whole.
negative consequences of the treatment. They sought possibil-
This deeper comprehension of the texts was achieved by tak-
ities, tested boundaries, and took control over their own situa-
ing the naive understanding together with the themes and sub-
tion. In this process, they received support from their relatives
themes into consideration.
and their social network and took the help they felt they
needed. Some of them lost control over their feelings and reac-
 Results tions, meaning that they were afraid of going mad. Time lost
its meaning and they experienced gaps in their memory. They
Ultimately, the 3 themes that emerged were the following: also described difficulties in concentrating and mood swings
(I) Believed in life, fought for it and came through stronger; beyond their control. In an existential sense they believed in life
(II) Life goes on, adapted and found a balance in the new life; and worked to live. They decided to get through and survive.
and (III) Life was over, felt out of control and lost belief in life. They worked out strategies to cope with the difficulties and
fought against their illness. Belief in life meant trying to live as
Believed in Life, Fought For it and Came usual, not thinking about death. Life itself contained a force
that helped them through the difficulties.
Through Stronger
When these people (n  5, 2 male and 3 female) became ill CURRENT LIFE
(2 AL, 3 HML), they were in the process of starting a family
In their current life they were still physically impaired, but
and working for an income. They were in an active phase of
accepted the remaining difficulties and saw them as something
their lives and focused on the future. This group was the
they could live with. This meant that they adapted their lives
youngest, with an average age of 40.4 (SD 13.1). They lived
to the new situation or found strategies for combating it. At
in stable relationships (Table 2).
the time of the interview, all participants in this group had
occupations, some full-time, others in combination with dis-
INITIALLY
ability benefits. Even the youngest survivor had now formed a
The time from when the symptoms first emerged to when the family and had children. In a psychosocial sense they felt
diagnosis was given meant in a physical/practical sense increas- tougher and stronger, meaning that after their illness they acted
ing tiredness and infections. The diagnosis assured them of the more independently and thought more about themselves.
reason for the complaints they had experienced for up to 1 year They dared to do more and were not afraid to try new things.

306 ■ Cancer Nursing™, Vol. 27, No. 4, 2004 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 Psychosocial Existential

Initially Increasing tiredness, infections Misgivings were justified Sensed a threat of death
“…I was terribly tired. I could go on “I suspected all along that it was serious, but no “The not knowing and waiting was hard, but deep
sleeping even when I’d already slept for one believed me. So I drew a sigh of relief that inside I had a feeling, I kept my fingers crossed”
12 hours. I found it hard to breath someone actually cared about me … finally Understood the threat of death and life was turned
…coughed and coughed… it wheezed someone believed me and would help me” upside down
and rattled” Like a bolt out of the blue “just think how fast things can happen, you
“you did not know anything. We sat in there and think you’ve got a stomach flu and suddenly it’s
waited … and then the doctor came in and prac- a fatal illness”
tically threw it in our faces that it was leukemia.”
During treatment The body broke down Looked for strategies, struggled and gained control Believed in life
“I felt sick and had no appetite, physically “I really had something to fight for … I never “being ill was still living in a way. You lived
exhausted, my physical condition gave up no matter how hard it was. If I manage anyway. I have never doubted for a second that I
deteriorated drastically. I lost 20 kilos in 6 this I’ll manage the next lot. But of course it was would manage it”
weeks” difficult sometimes” Worked to live
Lost control Lost control over their feelings and reactions “well you had 50% chance of surviving, it wasn’t
“.. I began to feel fuddled, I wasn’t so clear “I lay on my bed and was completely gone, don’t no chance any longer, so I chose the 50 % which

Lived Experience of Survivors of Leukemia or Malignant Lymphoma


about things, I had problems with my bal- ask me if I ate or anything” was for survival”
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 Tougher and stronger Given a new lease of life
“I still get infected easily, avoid people “I think more about myself, I’ve become tougher” “I’ve got a new day and I’m not going to sleep it
with colds ... so I can’t have my old job “perhaps I’ve become more daring—perhaps in away, a feeling like that”
back. I’ve started to look for a new job, the wrong way” “I’ve fallen in love with life today. Each spring I
starting a fresh” Positive changes in lifestyle can’t hold the tears back, they stream from my
“I didn’t appreciate things as much before as I do now” eyes out of gratitude for life”

Cancer Nursing™, Vol. 27, No. 4, 2004 ■ 307


This meant a personal growth during their illness and a posi- adapted their lives to the new situation. In a psychosocial
tive change in lifestyle. They appreciated little things in life like sense, they experienced positive changes in lifestyle, meaning
taking a walk in the sun. They had become stronger as human that they accepted and felt grateful for the new situation. In an
beings, and felt they had increased their ability to value life existential sense, they experienced that life goes on, meaning
itself. Relationships within the families had been strengthened. that life took its own course and they were prepared for the
In an existential sense they saw themselves as winners and felt end. They had a rich life behind them, which was the focus of
that they had been given a new lease of life, of which they tried their current situation. They were satisfied with their lives and
to make the most. They had left their illness behind them and felt grateful for the time they still had, but at the same time
reported no anxiety about getting it back. were prepared for the end, as a result of old age rather than
their illness. The narratives were positive and entailed an
Life Goes on, Adapted and Found a acceptance of life as it was.
Balance in the New Life
This group (n  6, 3 male and 3 female) constituted the highest Life Was Over, Felt out of Control and
average age, 68.2 years (SD  9.4), all with the diagnosis HML. Lost Belief in Life
They were at the end of their professionally active lives. They
This group of survivors (n  7, 3 male and 4 female) were liv-
lived in well-functioning social communities where children and
ing active lives at the time they developed the illness (2 AL, 3
grandchildren were an important part of their lives (Table 3).
HML), but were approaching retirement, having an average
INITIALLY 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
At the beginning of their illness they had had various com- lived in socially stable relations (Table 4).
plaints (increasing tiredness, infections) for which they sought
medical attention. The diagnosis meant that their misgivings INITIALLY
were justified. In an existential sense they understood the threat
of death but did not worry. They were not afraid of death but In the initial stage of the illness they had experienced various
they wanted to fight for survival. At the same time they knew complaints, for which they had sought medical advice (increas-
that life would not last forever. ing tiredness, infections). When they got the diagnosis they kept
their feelings inside themselves. They were used to being strong
DURING TREATMENT people and did not show others their worry. In an existential
sense, they understood the threat of death and life was turned
During the period of treatment, most of them had physical upside down. They found themselves in a chaotic situation.
and psychological complaints that worsened throughout the They had not previously sensed the seriousness in their condi-
treatment (the body broke down). Some of them felt rather well, tion and were totally unprepared and the diagnosis made them
meaning that they experienced the difficulties in a way that lose their footing for a short time. They stood face to face with
they found acceptable. This meant that they did not feel that death and had no strategies for dealing with the situation.
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- DURING TREATMENT
dling the problem were not to give too much energy to the ill- The treatment meant great physical and psychological stress
ness and its consequences. They insulated themselves from afflic- (the body broke down). They tried to maintain their usual lives
tions, which signified that they would not admit anyone, but regarding work and acquaintances. They had only a short
kept everyone else and the illness away from themselves. Some amount of sick leave and started work again soon after treat-
of them felt trapped and helpless, meaning that they had no ment. In a psychosocial sense, during treatment they insulated
influence over the events, were in fact victims who passively themselves from afflictions, meaning that they tried to be strong
went along with the development. In an existential sense the and not admit they needed any help. They tried to keep every-
future was unpredictable. The future felt insecure, they were one else and the illness away from them. They safeguarded
tossed about between the certainty of survival and the fear of their independence and did not want any help. They shifted
not having enough energy. But, at the same time, they believed between looking for strategies to fight and insulating them-
in life, that life itself gave them support through an inner force. selves from difficulties. Some of them felt trapped and helpless
Those who were spiritual believers said that a higher power gave and that they had no influence over events. They had little self-
them the strength to deal with their difficulties. It was not they confidence and often felt ashamed of themselves and their sit-
who were responsible for their survival but a higher power, uation. Sometimes they lost control over their feelings and reac-
which governed their lives and gave them support. tions and were afraid of going mad. Time lost its meaning and
they experienced gaps in their memory. They felt like victims
CURRENT LIFE
who passively went along with developments. In an existential
In their current lives they accepted the remaining difficulties, sense, they believed that life was over. They did not believe that
such as not being able to handle stressful situations. They they would manage to cope with the pressures that they were

308 ■ Cancer Nursing™, Vol. 27, No. 4, 2004 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 Misgivings were justified Understood the threat of death but did not worry
“I got a heavy cold with a temperature and “Not knowing was worse, the fear was with me “knew it was serious, it had gone so far, but it
had to go to bed … after two weeks I was all the time. It was a relief, a relief that didn’t have to mean I would die”
so tired and dizzy that I not longer had the something would happen.”
energy to go down stairs or prepare food”
During treatment The body broke down Looked for strategies, struggled and gained control The future was unpredictable
“I lost 12 kilo in 3 weeks … I couldn’t get “I tried to do as much as I could myself … and “we know that sometime we will be parted, but
anything down… it stuck in my throat … it went quit well … I got special utensils to eat we don’t know who will go first so, of course, it’s
it was swollen… so I had to eat gruel” with, with a large handle” difficult”
Felt rather well Insulated themselves from afflictions Believed in life
“they said some people reacted to the “I didn’t have the energy to tell people about it, I “I’ve got most things in life, if I died it’s OK, I’m
injection, but I didn’t” drank a couple of whiskies and had a cigarette. I not afraid of it”

Lived Experience of Survivors of Leukemia or Malignant Lymphoma


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


Initially Increasing tiredness, infections Keeping things inside oneself Understood the threat of death and life was turned
“I got awful colds, I had to stay in bed … “I felt very alone, it hurt me both physically and upside down
I felt tired and had headaches … I just got psychologically. When I saw my husband cry I “everything was going so well when this
more and more tired.” went all cold inside, and instead I was the one happened. I was 100% alive, thought everything
“I was so tired I could barely stand up.” giving comfort.” was great, and then it all came crashing down”

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


During treatment The body broke down Insulated themselves from afflictions Believed that life was over
“I was so thin and miserable. I had always “I did everything to suppress this, with every “so that last moment has come, there’s nothing
kept in good shape and now all my skin second, every hour that passed; I pushed it away else”
hung off me. I couldn’t bear it” from me, wouldn’t have anything to do with it or “I thought so this is death and the family will
be reasonable” break up”
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”
In their current life Disappointed at not being restored to health A negative self-image and loss of control over feelings Scared of the future
“the tiredness is still there, I can’t manage “when I’m under stress everything knots up, I “I don’t feel I’d manage another time, I know
as much either physically or intellectual, I lose my temper and I just have to leave” lots of people have a relapse, I find it difficult to
don’t have the energy or will to stand up “You think you are a big useless thing who can’t think I would survive it”
to stress” do anything, you get angry with yourself. I could Bitter about life
do anything before.” “Is this the thanks you get for doing everything
Turned in on themselves, hid their feelings and felt and fighting, it’s really hard”
powerless “I’ve lost something that will not come back, I’ve
“it was stressful and the demands kept increasing, lost my belief in the future”
I had no time to get grips with my inner self, so
I hid it away”

Persson & Hallberg


faced with but believed that their moment had come. This the interviews they were still struggling to make sense of the
aroused fears in them, which reduced their capacity to fight. whole experience. Perhaps making sense of events does not
necessarily mean that the event is meaningful but that the per-
CURRENT LIFE son integrates the event into his/her life story in a sensible
manner. The narrative mode is one way of approaching and
At the time of the interview they were back at work but felt understanding life and creating meaning into a life situation.19
they really could not cope with it. Although they were in Results revealed that living through the disease and treat-
remission, all were disappointed at not being restored to health. ment was a severe traumatic event. Above all, it was an over-
They did not accept the physical changes and their body whelming threat to their lives, both physically and existen-
engendered feelings of shame and an unwillingness to allow tially, and it could be understood within the framework of
anyone to see it, sometimes not even their partner. They had crisis theory.11,20 The traumatic event (falling ill), the aware-
not recovered physically or psychologically and had not found ness that it might be serious, and receiving the diagnosis meant
a way of living with their remaining impairments. In a psy- disorganization for all respondents in this study. The period of
chosocial sense, they had a negative self-image and loss of control disorganization was severe and continued through the period
over feelings. This meant they made demands on themselves to of treatment, in some cases to a level where they lost their ori-
which they were not able to live up. They had poor self-esteem entation to reality. They all had severe physical complaints and
and found it difficult to withstand psychological pressures and experienced increased tension, anxiety, hopelessness, isolation,
to control them. They turned in on themselves, hid their feelings, anger, doubt, and powerlessness. Thus, the interpretation
and felt powerless, which meant withdrawing to avoid con- implied that all participants were in a state of shock. Their sit-
frontation with previous experiences. Not involving anyone uation worsened successively because of the gradual break-
else indicated feelings of loneliness and detachment without down of their physical health engendered by the treatment.
personal relationships. They had lost their belief in the future This process went on over a long period, varying from 2 to 12
and their ability to influence their lives. In an existential sense, months. Some put themselves in the hands of the hospital
they felt scared of the future. The future evoked feelings of fear staff, others were deeply worried, and still others struggled.
of getting the illness again and of dying; this prevented them This suggests that it is important to base the care provided on
from enjoying life. Their expectations of a calm and peaceful the knowledge that such people are in a crisis. As far as possi-
period at the end of an active life had been shattered and they ble, medical staff should help the patient to reduce physical
felt bitter about life. They had struggled through the period of problems arising from the illness and the treatment so that the
illness but now thought that it had not been worth the effort. patients can devote their energy to managing the psychosocial
They had paid too high a price for survival. 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
 Comprehensive Understanding as a meaningful part of it. This resembles the suggestions made
and Reflection by Kenyon and Randall,19 that the meaning of and nature of
time are connected to our lives as stories; we do restory our
Comprehensive understanding is the last phase in the phe- lives to make sense of it, make it meaningful. As stated by
nomenological hermeneutic process, which involves the reflec- Hydén,12 by listening to people’s stories in a nuanced and care-
tive reading of the text as a whole, the first naïve understand- ful way, the nursing staff can affirm the patients and help them
ing, and the result of the structural analysis and in this study to repair or make some sense out of what has happened to
expanded by the social and medical history as told by the them. Frank13 suggested that part of care giving is to recognize
patient in the interview. In the narrations of the meaning of how patients struggle to reform that part of them disoriented
lived experience of falling ill with AL or HML, being under and damaged by illness.
treatment, and of life following this event, 3 themes emerged: The findings in this study indicated that the impact of the
believed in life, fought for it and came through stronger; life disease and treatment might depend on the period of life of the
goes on, adapted and found a balance in the new life; and life respondents. Their private evaluation of the entire experience
was over, felt out of control and lost belief in life. The inter- was interwoven into this. The first group that evaluated its
preted whole can be understood from the perspective of creat- current situation positively was the youngest and felt that life
ing meaning of living with an extremely life-threatening dis- lay in front of them, including family, children, and a career.
ease, meaning being in a profound crisis, existentially and They decided to fight for, and believed in life. They had every-
psychosocially but also physically. In the first 2 themes, the thing to gain and fought against all the strains. The second
respondents were able to create meaning and thus make sense group was the oldest. They accepted that life has an end, and
of the situation and integrate the event into his/her life story appreciated their remaining time. They focused on what they
in a sensible manner. They were able to create a whole story had done previously in their life, appreciated life, and did not
out of their life. In the third theme the respondents were plan for the future. They felt grateful for what life had given
not able to integrate the event of having been through a life- them up to now. The third group that evaluated its current sit-
threatening disease in a manner that made sense to them and uation with bitterness, lost belief in the future. They were
thus it also seemed to be meaningless to survive. At the time of approaching retirement and had just left responsibility for

Lived Experience of Survivors of Leukemia or Malignant Lymphoma Cancer Nursing™, Vol. 27, No. 4, 2004 ■ 311
children behind, and started to plan for their own future, (eg, lives. Those who viewed their quality of life as improved stated
a new job or retirement and the freedom that would imply). that the struggle was meaningful and the experience had made
Their expectations for the future and their plans for their them grow, as a person. The illness had brought a new dimen-
forthcoming life were ruined. These findings are in line with sion into their lives, making it possible for them to leave the
the idea presented by Cullberg,20 in that the person’s evalua- events behind. They had not forgotten, but had converted
tion of the crisis and the development of the crisis reaction is their experiences into something positive. In the recovery
dependent not only on the event itself, but also on the period phase the disorganization is overcome by the struggle to iden-
of life the person is in and the inner, private meaning the event tify a reason or a meaning for the disruption in their life. Once
has. This indicates the importance of judging how events are meaning has been given to the event, either positive, negative,
perceived and the repercussion perceptions have on people, so or a combination of the two, reorganization begins.21 A narra-
that those who are more affected, or at risk of coming through tive approach may be a useful tool to help in the reorganiza-
the process with a reduced quality of life, can be recognized. tion process.
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  Methodological Considerations
themselves.
The results also showed the importance of judging and eval- The sample in this study included people with AL or HML.
uating available social support networks and the capacity to These are different diseases, but from a nursing perspective the
use them. It seems important to assess the amount, quality, similarities are greater than the differences. Both diseases are a
and types of social support as well as the patient’s ability to threat to the patients’ lives and, if untreated, they are fatal. The
access help for their possibly many different needs. The ability treatment in both cases mainly takes the form of aggressive
to deal successfully with the crisis is thought to be dependent chemotherapy over a long period of time. The treatment and
on the person’s social resources.20 In our results, however, the its side effects add to an already stressful situation. To provide
person’s personal resources to empower themselves stood out as high-quality nursing care, it is important to have some knowl-
being important, as well as the availability of a social network. edge of the impact of the disease and its treatment and to
Those who came out of it strengthened actively used their understand the meaning of the situation for the people
social support network. They used the available resources in involved.
terms of family, relatives, friends, fellow patients, and staff for The study group (n  18) was drawn from a sample of 54
support. Those who isolated themselves left the experience survivors of AL/HML who responded to a questionnaire.2
with feelings of bitterness and lost their belief in life. Rather, Among those who did not respond to the questionnaire were
they tried to be strong on their own. Thus, they did not share some who gave as their reason for not answering that the expe-
their problems with other people. In an earlier study, some rience had been so difficult and painful that they did not wish
spouses were interviewed,10 the results revealed that some to revive it in their memories. Those who volunteered to par-
spouses were not “let in” by their partners, and thus not ticipate in the interview were possibly those who felt a need to
allowed to participate in the ongoing situation. These spouses consider more deeply their earlier or current situation and
felt discontented and powerless without any possibility of sup- who, at the same time, had the strength to talk about their
porting their sick partner. It is possible that these were in rela- experience. This might mean that those who were most sick or
tionships with the survivors who, in this study, isolated them- had insulated themselves from their experiences were not
selves from contact with others. If so, the spouses as well as the included among the interviewees. Therefore, the study may
sick partners suffer emotionally from the isolation. There have produced a more positive description of the experience.
seems to be an urgent need for a strategy to bring families In an interview situation, the content is determined by the
closer together and to use this closeness for mutual support. interplay between the interviewer and the interviewee. The
Caplan21 suggested that emotional equilibrium is usually narrative changes according to what is being narrated, even if
maintained by aspects of ego functioning. He described 3 the core remains the same.1 Other interviewers may have
main areas that indicate the state of the ego: reaction to stress; drawn out other narratives, which would not have been any
problem-solving methods; and adjustment to reality. Taken more or less true but simply have reflected the situation from
together, these aspects may explain the variation in processing another angle. A narration brings out problems and possibili-
and using the social network. In turn, this may explain the ties in interviewing that are not visible when attention is
variation among the groups. In nursing care, an important restricted to “question and answer” exchanges.
objective should be to help the patient overcome any personal The researcher’s preunderstanding always influences the
difficulties that may hinder him/her in dealing with the crisis, interpretation process.17 This cannot be denied and must be
for example, seeing to it that the patient is able to accept help met by adhering to a strictness of method throughout the
or express his/her feelings. entire research process. This was counteracted by the analyses
Those people who spoke about the experience with bitter- being made by the 2 authors together with a skilled oncology
ness saw no meaning in the experience and they felt their cur- nurse not previously involved in the study. The first author
rent life was not worth the struggle. They were not able to and the oncology nurse alternately, and independently of each
leave the experience behind or to integrate the event into their other, read the texts and then discussed the findings until

312 ■ Cancer Nursing™, Vol. 27, No. 4, 2004 Persson & Hallberg
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