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ONLINE EXCLUSIVE
Quality of Living Among Ovarian Germ Cell
Cancer Survivors: A Narrative Analysis
Melinda M. Swenson, RN, PhD, Jessica S. MacLeod, RN, BSN, Stephen D. Williams, MD,
Anna M. Miller, RN, DNS, and Victoria L. Champion, RN, DNS
Key Points . . .
Purpose/Objectives: To describe and interpret the meaning of expe-
riences that are important to the quality of living of ovarian germ cell
cancer survivors.
Although ovarian germ cell cancer is a very curable disease,
Research Approach: Qualitative description within a constructivist
girls and women who are diagnosed with this rare cancer still
paradigm.
experience physical and psychological sequelae from the can-
Setting: 32 member sites of the Gynecologic Oncology Group and
cer itself or the treatment.
the University of Texas M.D. Anderson Cancer Center in Houston.
Participants: 109 women between the ages of 1964 (median age =
Using qualitative methods to explore the experiences of
36) who were enrolled on prospective clinical trials of cisplatin-based
women with ovarian germ cell cancer may help researchers
chemotherapy after surgery and disease-free for at least two years.
and clinicians gain a deeper understanding of what patients
Methodologic Approach: As part of a larger study, narrative re-
experience when surviving this cancer, beyond the informa-
sponses to four semistructured questions were collected at the end of
tion that traditional quality-of-life measures can provide.
a telephone interview. Using naturalistic inquiry and qualitative descrip-
Four themes are important to the quality of living of ovarian
tion techniques, content labels were assigned to units of text that
seemed to encapsulate one complete thought or idea. The labeled
germ cell cancer survivors: celebrating illness, experiencing
groups were collapsed into interpreted subthemes. Finally, four general
empathetic affirmation, mourning losses, and valuing illness.
themes were constructed as representations of shared narrative re-
sponses and meanings.
Findings: The four constructed themes are celebrating illness, expe-
riencing empathetic affirmation, mourning losses, and valuing illness.
Ovarian germ cell cancer usually is diagnosed in girls or
Interpretation: In addition to measuring physical, psychological, and
young women, with the median age of 1620 at diagnosis
sexual functioning in women surviving ovarian germ cell cancer, nurses
(Sagae & Kudo, 2000). The young age of women and girls di-
also must understand how these issues fit into their everyday lived ex-
agnosed with this cancer, coupled with the high survival rates,
periences. The four themes may help clinicians and researchers to un-
presents an obligation to investigate the occurrence of pos-
derstand issues that are important to the quality of living of ovarian
sible long-term physical or psychological sequelae of the can-
germ cell cancer survivors.
cer itself or the mechanisms used to treat it. As noted by Wil-
liams, Gershenson, Champion, and Cella (2001), little
research is available on long-term physical sequelae in women
he treatment of ovarian germ cell cancer has advanced
T
treated for ovarian germ cell cancer and subsequent quality of
significantly since the 1980s. Researchers and clini-
life (QOL) after treatment.
cians have made impressive progress in the treatment
Survivors of this cancer may face site-specific or more gen-
of this very curable cancer. As recently as the 1960s, this
eralized physical or psychological problems as a result of the
rapidly growing malignancy often was associated with very
poor prognoses, with only 5%20% of patients with stage
I disease surviving after surgical treatment (Gershenson,
Melinda M. Swenson, RN, PhD, is an associate professor of nursing
1993). The relatively recent introduction of combination
and Jessica S. MacLeod, RN, BSN, is a doctoral student, both in the
c h e m o t h e r a p y , including bleomycin, etoposide, and
School of Nursing at Indiana University in Indianapolis; Stephen D.
cisplatin, into standard treatment protocols for ovarian
Williams, MD, is director of the Indiana University Cancer Center;
germ cell cancer has significantly improved the outlook for
and Anna M. Miller, RN, DNS, is a research scientist and Victoria
those diagnosed with this disease (Williams, Blessing, Liao,
L. Champion, RN, DNS, is a professor and associate dean for re-
Ball, & Hanjani, 1994). Overall cure rates for this cancer
search, both in the School of Nursing at Indiana University. This
project was supported, in part, by the National Cancer Institute
have improved to 75% or better in patients with metastatic
(RO1 CA77470) and the Gynecologic Oncology Group. (Submitted
c a n c e r and 95% in patients with stage I disease
November 2001. Accepted for publication January 15, 2003.)
(Gershenson, 1993, 1994; Gershenson et al., 1990; Mitchell
et al., 1999).
Digital Object Identifier: 10.1188/03.ONF.E48-E54
ONF VOL 30, NO 3, 2003
E56
psychological functioning. For example, Auchincloss (1995)
treatment or the disease itself (Andersen, 1993, 1995; Cella,
1987; Gobel et al., 2000; Mitchell et al., 1999; Sagae & Kudo,
called for practitioners to be aware of infertility and sexuality
issues that might arise in this population, such as decreased
2000). Potential problems identified in the literature include
desire, pressure from a partner to resume sexual activity, and
fertility concerns, sexual function issues, neuropathy, second-
ary malignancy from chemotherapy, decreases in psychologi-
fearing or experiencing pain. Cella (1987) included infertility
concerns and satisfaction with sex life as a measure of sexual
cal well-being, and disruptions in social support (Lackner,
adjustment and possible interpersonal disruption in cancer
Goldenberg, Arrizza, & Tjosvold, 1994; Mitchell et al.;
Zeltzer, 1993).
survivors. He proposed that the category of marital and sexual
adjustment might be difficult to quantify: "It is possible that
The National Cancer Institute-funded study (Williams et al.,
this reduced desire for intimacy is not adequately measured by
2001) is the first attempt to measure and understand QOL in-
dicators and their predictors in ovarian germ cell cancer sur-
a gross, subjective measure such as marital satisfaction" (p.
63). Therefore, qualitative, narrative data analysis may be bet-
vivors. The researchers hypothesized that cancer diagnosis
ter situated to uncover the sexual issues that cancer survivors,
and treatment, sociodemographic characteristics, other life
especially ovarian germ cell cancer survivors, may face in the
stressors, and social network variables would affect three
years after their cancer treatment.
components of QOL: sexual, physical, and psychological
The articles reviewed also supported the Williams et al.
functioning. Quantitative measures and predictors of QOL are
(2001) QOL category of physical functioning as a pertinent
important in understanding how these specific variables may
issue in cancer survival. Cella (1987) included somatic dis-
affect an ovarian germ cell cancer survivor at the time of the
tress as an example of how a cancer survivor may experi-
interview. However, in asking about specific variables that are
ence intrapersonal distress. Somatic distress includes physi-
meant to quantitatively measure a predetermined conception
cal concerns such as fatigue and lethargy, as well as anxiety
of QOL, researchers may obtain only a single point-in-time
about recurrences of cancer. Aging issues in cancer survi-
measure, as well as inadvertently miss crucial questions that
may evoke rich data about the quality of livinga as an ovarian
vorship were explored by Auchincloss (1995), when she
wrote of cancer survivors feeling old after cancer treatment,
germ cell cancer survivor.
especially gynecologic cancer survivors who experienced
Anticipating this possibility, Williams et al. (2001) added
treatment-related (and distressing) menopause symptoms
four semistructured interview questions at the end of their
during what normally would have been their childbearing
quantitative measures. This design strategy intended to cap-
years.
ture data not previously available, because these researchers
Psychological functioning as a QOL category in cancer
were aware that the previous questionnaire items could in-
survivors also is supported by the preliminary literature re-
fluence the qualitative responses and were interested in ask-
view. Some psychological indicators of intrapersonal distress
ing these questions to strengthen the questionnaire data.
in cancer survivors have been proposed, including mood, self-
These are the data considered in this present qualitative
esteem, and cognitive dysfunction (Cella, 1987). Social sup-
study. Taken along with the quantitative data generated by
port also has been cited as an important determinant of men-
Williams et al. (2001), the qualitative inquiry and analysis
tal health (Lackner et al., 1994).
may help to more fully capture important issues previously
These articles provide support for quantitative measures
undefined. Specifically, the current analysis sought to an-
used to gather information about QOL in ovarian germ cell
swer two questions: (a) How do female survivors of this can-
cancer survivors. These readings, however, may provide a
cer describe their experiences? and (b) How do these re-
theory-limited and clinician-centered viewpoint of specific
sponses help healthcare professionals understand the idea of
issues important in the QOL of cancer survivors. Qualitative
"quality of living" as shared among women surviving ova-
research articles and other readings might provide broad, ex-
rian germ cell cancer?
periential descriptions of what is important in the quality of
Background
living as a cancer survivor and, specifically, as a woman sur-
viving ovarian cancer. Some ideas from this literature echoed
those found in more traditional research and clinical articles,
In the present study, a preliminary literature review was un-
whereas other experiences were more anecdotal about patients
dertaken to survey survivorship issues of cancer survivors.
experiencing a chronic illness. These writings served to open
Specifically, gynecologic cancer survivors and survivors of
the minds of the researchers to themes that may be constructed
ovarian cancer (not necessarily of germ cell histology) were
from narrative data but in no way limit the themes to those
targeted. This literature review was not exhaustive but rather
already found in existing literature.
was used to provide a context in which to compare and con-
Qualitative literature included Breaden's (1997) hermeneu-
trast findings and themes from a qualitative description of nar-
tic phenomenology inquiry to interpret narrative data from six
rative data. Conventional quantitative research and clinical
women surviving cancer. Breaden developed two main
journal articles were included in this literature review, along
themes from the interview data: living in a body and living in
with other writings (e.g., fiction, poetry, biographic and auto-
time. Living in a body included the more specific themes of
biographic works) that provided more narratively eloquent de-
feeling whole from an experience of disembodiment to em-
scriptions of chronic illness experiences.
bodiment and the body as a house of suspicion. Feeling whole
Many of the research and clinical articles specifically ad-
represented the idea that the women in this study spoke of
dressed usual QOL categories, including sexual, physical, and
feeling a separation of mind and body and that their bodies
and selves sometimes were not united. The body as the house
a
The authors use the term "quality of living" to differentiate this
of suspicion mirrored Cella's (1987) psychosocial issue of so-
qualitative, subjective view from the more standard quantitative
matic distress wherein the women voiced continuing anxiety
concept of "quality of life."
SWENSON VOL 30, NO 3, 2003
E57
Methods
regarding the recurrence of cancer and a hypervigilance of
somatic complaints.
Participants
Breaden's (1997) larger theme of living in time had four
specific subthemes: (a) the future in question, (b) changes in
An unusually large group of women surviving a rare can-
time, (c) a feeling of being lucky to be alive, and (d) sharing
cer was available through the Gynecologic Oncology Group
the journey. "The future in question" represents a feeling
(GOG), a National Cancer Institute collaborative group. The
that cancer somehow had disrupted ordinary, continuous
109 survivors included in this study were from 32 different
time as people usually live in it and mark its passage.
GOG sites and the University of Texas M.D. Anderson Can-
Auchincloss (1995) echoed this sentiment in the psychoso-
cer Center and are part of a larger survivorship study of 135
cial category of aging issues in gynecologic cancer survi-
survivors from 42 sites. Ovarian germ cell cancer survivors
vors. Auchincloss described women feeling "dislodged in
were eligible for this qualitative analysis if they had com-
time" because they were denied culturally important mile-
pleted both the background questionnaire and telephone inter-
stones, such as menstruation, pregnancy, and childbirth, as
view for the larger GOG survivorship study. Women were
a result of cancer treatment and subsequent infertility or hys-
eligible to participate in the larger survivorship study if they
terectomy. The second subtheme included in living in time
had been enrolled in clinical trials of cisplatin-based chemo-
was "changes in time." This theme came from the women
therapy after surgery and were disease-free for at least two
speaking of how cancer forced them to make changes in
years.
their lives, including positive changes that helped them to
Data Collection
live better. A feeling of being "lucky to be alive" expresses
the idea that some women felt well and lucky to survive af-
Respondents in the study were contacted by their treatment
ter their cancer experience. These two preceding sentiments
sites and returned written informed consents indicating will-
seem echoed in other cancer survivorship literature, where
ingness to participate in a telephone interview. Two women
95% of cancer survivors responded affirmatively when
interviewers (social work graduate students with survey expe-
asked if anything positive came from their cancer experience
rience and didactic training) conducted the telephone survey.
(Wasserman, Thompson, Wilimas, & Fairclough, 1987).
The interviewers asked questions from a wide variety of mea-
"Sharing the journey" is the last subtheme of living in time,
surement instruments (including seven different QOL scales),
and it represents the idea that the women often wanted to
and each interview lasted nearly an hour.
share their experiences of living with and surviving cancer
At the end of this long telephone call, the interviewers
with others, including family, friends, their god, and those in
asked four semistructured questions: (a) What would have
support groups.
been most helpful for you during the diagnostic and treatment
A second phenomenologic study uncovered 12 fascinating
period? (b) What would be helpful for you now as a cancer
themes from the narrative data of five women living with
survivor? (c) What, if anything, is the most significant chal-
ovarian cancer during their childbearing years (Schaefer,
lenge or problem for you now related to having had cancer?
Ladd, Lammers, & Echenberg, 1999). Important themes in-
and (d) What else would you like to tell me about your can-
cluded the ideas of serendipitous diagnosis, managing treat-
cer experience? These questions were aimed at capturing a
ment, the horrible hair experience, hysterectomy violating a
broader view of the experience of surviving. The interview-
sense of being, unfairness of menopause, body changes, inti-
ers recorded the women's responses in writing (transcribed
mate dreaming, being with others, being normal versus being
directly on a laptop computer). The interviewers validated
different, being vigilant (about the body and its somatic sen-
those responses verbally with the participants to ensure accu-
sations), being heard, and comprehending (the meaning of the
racy. The entire study, including the four questions, was ap-
experience). Schaefer et al. did not create any overarching
proved by the institutional review boards of all the institutions
patterns from the existing 12. Naming overarching patterns
involved.
that encompass constitutive themes would have helped to cre-
Data Analysis
ate a shared meaning accessible to readers, practitioners, re-
searchers, or others living with ovarian cancer beyond the
The authors reviewed the methodologic literature to de-
limitations of the 12 specific categories.
velop ways of study applicable to analyzing these existing
Because of the inductive nature of the present study, the
end-of-interview data. Because the authors did not design the
authors searched for references to lend support and cre-
questions and were not involved in the interviews themselves,
dence to the findings as well as studies that might challenge
their connection with the questions and answers was loose.
the findings. The authors looked beyond the scientific and
The authors received the data after it was collected, and their
professional nursing literature for descriptions of the expe-
task was analyzing the semistructured interview questions
rience of surviving serious illness. Frank (1991), through
only. The four questions designed by the researchers involved
his experiences as a medical sociologist and especially as a
in the larger study were reviewed by one of the authors after
person living with chronic illness, provided insight and cre-
the first 25 interviews, and revisions were suggested to make
ative inspiration with his eloquent phrasing of such ideas as
the questions more open-ended. The narratives existed as rela-
"illness as a dangerous opportunity," "mourning what is
tively short responses to the four questions. The format had
lost," "valuing illness," "listening to the ill," and "ceremo-
three limitations: (a) questions were asked at the end of a long
nies of recovery." Kleinman (1988) also reminded health-
and potentially tiring survey, (b) respondents' answers were
care providers to listen to the stories of those with chronic
possibly influenced by the previous questions, and (c) ques-
illness and emphasized the idea of attentive, empathetic
tions were not completely designed by the authors. Given this
witnessing to whatever the person with a chronic illness
situation, qualitative description (Sandelowski, 2000) seemed
wants to share.
to provide the method most consistent with the nature of the
ONF VOL 30, NO 3, 2003
E58
Table 1. Demographic Characteristics
data. Sandelowski used the phrase qualitative description to
characterize designs aimed at obtaining minimally interpreted
Characteristic
n
%
answers to real-world research questions. Such studies are less
theoretic and philosophic and more naturalistic than grounded
Age at interview (years)
theory, phenomenology, or hermeneutic designs. The authors
--
X = 35.4
were seeking a comprehensive summary of the responses of-
Median = 35.9
fered by the participants, using their own words, and the sum-
Range = 19.463.6
mary did not intend to arise from a philosophic substrate. The
Age at diagnosis (years)
--
authors adhered to a constructivist paradigm in which they de-
X = 26.1
termined to make sense of the experiences of the participants.
Median = 24.6
Range = 10.847.9
Guba and Lincoln (1989) noted that these constructions may be
Years since diagnosis
limited by "the range or scope of information available to a con-
--
X = 9.9
structor" (p. 71). Although shared meanings and themes were
Median = 9.7
developed from the narrative data, the nature of the questions
Range = 2.718.6
asked may not have evoked the richest data possible.
Racea
In addition to Sandelowski's (2000) method, the current
Caucasian
88
81
study used modified naturalistic inquiry techniques (Lincoln
African American
11
10
& Guba, 1985). The specific steps used were as follows.
Other
10
09
1. The text of each interview was read carefully and assigned
Education
content labels to identify meaning units, sections of text
< High school
27
25
Some college
31
28
that are aimed at understanding and can be interpreted in
College graduate
33
30
the absence of additional information (Lincoln & Guba,
> College degree
18
17
1985). Meaning units were phrases, sentences, and entire
Maritial status
narratives. Labels were focused on content at this early
Married or in committed relationship
62
57
level, rather than attempting early interpretation.
Not currently married
47
43
2. Both researchers read all transcripts and coded each inde-
pendently; then, they met to discuss and reach consensus
N = 109
about code labels.
a
13 survivors (12%) also indicated having a Hispanic or Latino background
3. Throughout this reiterative process, the labeled groups
were collapsed into subthemes. Reading, writing, thinking,
followed no set time pattern. In fact, some women seemed to
dialogue (Ironside, 1997), and reflection continued during
experience all of the described feelings and ideas simulta-
this constant comparison phase of the qualitative analysis.
neously. For example, when asked what would be helpful to
4. The researchers developed four larger themes representing
them now, some women talked about what they found help-
constructions regarding the shared meanings from the nar-
ful now and then freely moved into what was helpful in the
rative responses. These four themes comprised the findings
past, or what was difficult for them now or in the past. The
of this analysis.
four themes seem to represent free-flowing experiences that
occurred as past or present difficulties or triumphs living as an
Quality Criteria
ovarian germ cell cancer survivor.
Descriptive validity was addressed by having the interview-
Celebrating Illness
ers recheck their transcripts to ensure accuracy. Because the
surveys already were completed when the authors received the
According to Frank (1991), to celebrate an illness is to mark
data, the authors had no personal access to the respondents and
its significance or importance. The idea of celebration is one
could not check for accuracy. Member checking (i.e., taking the
of consciously recognizing an event that never should be for-
analysis back to the original participants for their agreement
gotten. A celebration is a way to take time to evaluate the
about accuracy, discussed by Lincoln and Guba [1985]) was not
meaning that the event holds. This choice is not meant to in-
stipulated in the original institutional review board approval, so
dicate that the women were happy about being diagnosed and
this strategy could not be used to validate the conclusions. This
absence is a limitation of the design of the study.
Celebrating illness
Findings and Discussion
Tangible sources of support (family, spouse, children, friends, church)
Receiving empathetic affirmation
Table 1 describes the 109 participants. Four major themes
Being with or staying with
emerged from the narrative data built on nine subthemes (see
Being isolated and feeling alone
Needing to talk or understand what is happening
Figure 1). The themes of celebrating illness, mourning losses,
Needing to be heard and understood
and valuing illness were inspired by Frank's (1991) narrative
Mourning losses
of personal experience with chronic illness. The idea of
Focusing on the physical
empathetic affirmation was influenced by the writings of
Emotional difficulties, depression, losing memory
Kleinman (1988). The writings of Frank and Kleinman
Feeling uncertain and insecure
seemed to capture the meanings constructed from subjects'
Valuing illness
comments.
Being positive or feeling good about oneself, finding good in a bad situation
The four themes do not constitute a linear or organized pro-
Figure 1. Themes and Subthemes
cess. They varied in their occurrence in the women's lives and
SWENSON VOL 30, NO 3, 2003
E59
idea that empathetic affirmation is crucial to women who are
living with ovarian germ cell cancer. People celebrate in many
ways, and often the topic of celebration or commemoration is
surviving ovarian germ cell cancer.
About half of the women studied spoke of wanting to talk
difficult or filled with grief.
to others with similar experiences with ovarian germ cell can-
Some women in this study spoke of having--or not having--
cer. Their need for this type of support did not seem to dimin-
their experiences as ovarian germ cell cancer survivors cel-
ish over time. Some women wanted to talk to other women
ebrated and recognized. One woman said that she would have
with ovarian germ cell cancer at the time of diagnosis and
liked "to have my family acknowledge the ongoing process of
treatment, whereas others wished for a support group to talk
dealing with cancer and the ongoing process of healing and to
about present survivorship issues. Women who had survived
be willing to talk about it more." Another woman indicated that
ovarian germ cell cancer for more than two years even spoke
the most significant challenge of having ovarian germ cell can-
of wanting to start a support group or be a resource for newly
cer was "carrying the burden of the experience without family
diagnosed patients. Narratives about support groups included
support and never having my family celebrate my survival."
statements such as, "It would have been helpful to have con-
These women wanted their experiences with ovarian germ cell
tact with and support from other cancer survivors to help me
cancer acknowledged and marked as significant by their fami-
see others who had made it through the treatment process."
lies and friends. In that sense, they wanted important people in
Another woman said that she wanted "group support specifi-
their lives to "celebrate" their illness.
cally for ovarian germ cell cancer."
Many women in the study told the interviewers that they
About a third of women in the study also noted, with disap-
found that receiving cards from family, friends, and acquain-
pointment, that family and friends failed to understand (or failed
tances was helpful and supportive. One woman said, "I re-
to want to understand) the importance of surviving cancer. As
ceived many cards from people who I thought were just ac-
an example, when asked what would have been helpful to her
quaintances." When asked what was helpful during her
at the time of diagnosis and treatment, one woman said,
treatment, a young adolescent said, "I received a lot of pre-
sents!" Many women spoke of the importance of receiving
For others to have given me the opportunity to honestly
cards, which was intriguing because on the surface this seems
talk about my feelings, instead of letting me keep a strong
like such a small gesture in light of being diagnosed and
face for everyone else, and to have others validate my
treated for cancer. The significance of the act of sending a
feelings--that it's okay not to be okay. I felt people were
card, however, becomes clear when placed in the larger con-
trying to be supportive but didn't really want to hear my
text of the women wanting others to be aware of and com-
pain and emotions.
memorate their illness.
Another woman said that she would have liked "to have
Receiving Empathetic Affirmation
people listen to what I went through in a serious manner, with-
out joking about it." These narratives describe how denying
Empathetic affirmation is a focused and attentive way to truly
the severity of the illness serves to undermine support for the
listen to and acknowledge the suffering of the person experienc-
one surviving ovarian germ cell cancer. The latter quotation
ing illness. Empathetic affirmation is a profound way of being
also illustrates the continuing need for empathetic affirmation
with a person who is ill but does not necessarily require any
of women's stories well after the diagnosis and successful
active or physical assistance. To engage in empathetic affirma-
treatment for ovarian germ cell cancer.
tion, a person does not have to "do" anything for the sufferer.
Rather, this type of affirmation involves simply trying to hear
Mourning Losses
and recognize, to the best of the listener's ability, the experi-
ences of the person who is ill. Frank (1991) wrote, "The power
Mourning losses represents grieving all of the physical, emo-
of recognition to reduce suffering cannot be explained, but it
tional, and social changes that occurred after being diagnosed,
treated, and surviving ovarian germ cell cancer. Mourning
seems fundamental to our humanity" (p. 104).
Frank (1991) noted that the opposite of empathetic affirma-
meant saying good-bye to the person that these women were
tion is denial--denial of the experience of having cancer, of
before this major life event. Nearly half of the women spoke of
the difficulties of treatment, of suffering, and of being special
disliking physical body changes, such as weight gain or thinner
and different from what they used to be can be extremely det-
hair, that occurred during and after chemotherapy treatment. "I
rimental to the mental well-being of people who are ill. Denial
feel vain for saying this, but losing my hair was probably the
hardest thing about the whole experience." Another woman said,
is a way in which cancer survivors and others with chronic ill-
ness are made to feel that their illness experiences are insig-
"I don't like my hair anymore. It grew back differently . . . it was
nificant and unimportant. According to Frank, the ultimate ex-
beautiful before I had cancer and I took a lot of pride and care
pression of denial is when friends and family avoid the people
of it." One woman told the interviewer, "I feel like I don't look
with cancer, seemingly forgetting their very existence.
the same physically. I don't feel pretty anymore. I experienced
Women in this study spoke of family and friends who used
weight gain after the cancer, and I can't lose the weight. I'm
empathetic affirmation to recognize their illness experiences.
depressed with my physical appearance."
For example, one woman said, "My family and friends were
More than half of the respondents felt that they experienced
there for me. It's not so much anything specific they said, just
changes in their emotional states, feeling more sad and de-
that they were physically and emotionally available to me."
pressed and having problems with memory and concentration.
Another women said, "People didn't judge me--if I wanted
One woman mourned that she had difficulty "dealing with my
to scream, they let me scream; if I wanted to laugh, they let me
body feeling in its sixties and my mind in its forties; it makes
laugh." Yet another woman said, "They let me be free; free to
me feel insane." Another women said, "[It was tough] dealing
be angry, outspoken, and to throw fits. People listened and
with concentration and memory difficulties and just not feel-
were there with me." These quotes provide testimony to the
ing as mentally sharp as I did before I was sick." Frank's
ONF VOL 30, NO 3, 2003
E60
pressed an idea common to many) said, "I am a lot smarter
(1991) illness experiences as a cancer survivor reflect similar
now when it comes to how to be with my kids. I give them
emotions: "Surgery and chemotherapy would irrevocably break
more attention and don't take them for granted." These women
my body's continuity with its past. My history had its share of
valued their illness for helping them gain a new perspective
regrets, but I mourned its passing. After surgery and chemo-
about living and reminding them about what aspects of living
therapy rearranged me, I would live differently" (p. 38).
provide them with the deepest meaning.
Some women mourned the social changes that their illness
Surprisingly, the data included few statements about the ac-
experience brought to their lives. About a quarter of the
tual logistics of cancer treatment or how the women perceived
women spoke of experiencing decreased sexual interest and
that their healthcare providers could make this experience better
desire and talked about the impact this change had on their
for them. The study found nothing about experiencing acute
intimate relationships with spouses or partners. One woman
treatment side effects (e.g., pain, fatigue, nausea) during the
said, "I am afraid to tell a man that I had cancer, especially a
diagnosis, treatment, or survival phases of ovarian germ cell
man that I would want to be intimate with."
cancer as might be expected in women currently undergoing
In addition to the physical, emotional, and social changes
therapy. Also, no statements were given about death or fear of
brought by surviving ovarian germ cell cancer, mourning
dying. Possibly, the women did not view the cancer treatment
what is lost also meant letting go of all the things that the
itself negatively, but rather accepted it as a necessary step in
women previously had believed, however presumptuously,
their probable full recovery. Another explanation is that the
were certainties in their lives. Shattering the illusion of pre-
questions asked did not address these specific issues.
sumed certainties, such as marriage, children, and good
health, was very difficult for most of the respondents. One
Implications for Practice
woman said, "It's hard to put the experience behind me. It's
always on my mind, and I'm always dealing with fears and
issues related to possible recurrence. I think, what would I do
Lived experiences are as unique as the people that live
if I got sick again?" Another woman mourned, "The only
them; consequently, the constructions of shared meanings are
problem is not having a child. Having children is very impor-
in no way meant to be a complete description of what is im-
tant. It's hard to really believe that I can't have children."
portant to all ovarian germ cell cancer survivors or to other
cancer survivors. Researchers and clinicians must be aware of
Valuing Illness
their own expectations and always listen mindfully for unex-
Valuing illness is the ability to make sense of the illness ex-
pected concerns, feelings, and meanings in the lives of their
perience and discover what meaning it holds for a person's life.
research participants or clients.
The idea of valuing illness is tied intimately to the idea of
Clinicians of all types who encounter women surviving ova-
mourning losses. Although most of the women spoke of mourn-
rian germ cell cancer may be able to use this inquiry in caring
for these patients. Because of the subjective nature of qualita-
ing the loss of things that were important to them, they also
added that through their losses, they became open and available
tive description, these findings cannot be generalized to other
to finding other valuable sources of meaning and contentment.
patients and settings. However, the findings still are useful; in
qualitative research, usefulness is enabled by a thorough discus-
Their illness experiences and initial losses enabled them to dis-
cover personal beliefs that came to have critical importance in
sion and vivid description of the participants, the setting, and
their lives. Valuing illness does not mean that these women
the conditions of the study. Readers then can decide whether the
were pleased with being diagnosed with ovarian germ cell can-
findings are transferable and applicable for other patients in
other settings. These themes simply may serve as a call for cli-
cer. Rather, valuing illness means that the women were able to
take their illness experiences and fit their unique meaning into
nicians to be aware that their presumptions may not coincide
a cohesive pattern of being that helped the women know more
with what is significant and meaningful in the lives of patients.
Specifically, practitioners should engage in assessment of the
clearly who they are and what is important to them. A major-
women's needs for empathetic affirmation with survivors of
ity of the women provided narratives that represent the idea of
valuing illness. One participant revealed,
ovarian germ cell cancer or other forms of cancer. Through
focused, unhurried, and attentive listening, practitioners may be
It was horrible, but I found--and was reminded while do-
able to learn about previously unrecognized needs and fears.
ing this survey--that once I healed emotionally and
Empathetic affirmation does not require high technology nor is
physically, I now look at life differently. I value and en-
it complicated, but it certainly requires mindfulness from prac-
joy each moment, tell people how I feel more often, feel
titioners. By actively attending to women and assessing their
a heightened sense of beauty in my life, my relationships,
needs to address losses and value surviving the loss, clinicians
and my religion.
may learn that the women wish people would celebrate their ill-
Another woman said,
nesses and mark its significance. This assessment may prompt
a suggestion to families or the women themselves to set aside
I have gotten good things out of it, including an increased
a day for family and friends to honor the women's experiences
appreciation for life, the importance of family and
and survival. An awareness of a need to celebrate the illness
friends. I have become more forgiving and understand-
may result in something as simple as sending a greeting card
ing. Counseling has helped me to see the good side of the
from the practitioner and staff. This sincere gesture meant a
experience and focus on my quality of life and to connect
great deal to many women surviving ovarian germ cell cancer.
with and relate to other survivors in a positive way.
Future Research
Still another respondent said, "It made me look at life in a dif-
ferent way, to take nothing for granted and to take better care
The limitations of the methodology of the present study in-
of myself and others around me." Lastly, a woman (who ex-
dicate directions for further research into the quality of living
SWENSON VOL 30, NO 3, 2003
E61
an Internet support group could be a model for other virtual
as an ovarian germ cell cancer survivor. Asking four semi-
structured questions at the end of a lengthy telephone inter-
support efforts. Research could be designed to explore the
social processes used by these women as they seek meaning
view may have limited the data collection because of fatigue
and value in their cancer experience. Finally, tangible ways of
or pattern influence (response set) on their responses. Future
phenomenologic research that separates the qualitative data
showing that clinicians hear and value the unique experience
of each woman surviving cancer could be proposed and as-
collection from the rest of the interview and places the un-
sessed in an effort to improve follow-up care.
structured questions before the quantitative measures in the
design is planned. Future research questions will be even
Conclusions
more open-ended, starting with an invitation to "tell me a
story about your life as a woman surviving ovarian germ cell
cancer." This approach to research may help to generate richer
The shared meanings constructed from the narrative data
provide a fuller understanding of what aspects of surviving
narratives that lead to deeper and more meaningful interpre-
tation of the quality of living for women surviving ovarian
were critically important in the lives of these 109 women sur-
germ cell cancer.
viving ovarian germ cell cancer. Celebrating illness, empa-
thetic affirmation, mourning losses, and valuing illness are
Future quantitative studies could consider evaluating the
effectiveness of the interventions suggested in the themes
ways in which the women found comfort and meaning in their
(e.g., clinicians could explore and evaluate ways to help
lives. This analysis may lend experiential support to known
women and their significant others recognize and celebrate the
difficulties or reveal unexplored issues important to the qual-
cancer experience). The idea of empathetic affirmation sug-
ity of living of women surviving ovarian germ cell cancer.
gests that ovarian germ cell cancer survivors should have ac-
These understandings can help clinicians, students, and fami-
cess to support groups made up of other women with this
lies to better assess and meet the needs of women who survive
same disease. Because ovarian germ cell cancer is so rare, a
cancer and thrive.
woman's geographic area may not contain any other survi-
vors. The Internet, such as an interactive Web site, could bring
women with this cancer together to hear each other's stories
Author Contact: Melinda M. Swenson, RN, PhD, can be reached at
and affirm one another's experiences. A study of the effect of
mswenson@iupui.edu, with copy to editor at rose_mary@earthlink.net.
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