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ONLINE EXCLUSIVE
Resolution of Spiritual Disequilibrium
by Women Newly Diagnosed With Breast Cancer
Doris Dickerson Coward, RN, PhD, and David L. Kahn, RN, PhD
Key Points . . .
Purpose/Objectives: To describe the experience of restoring and
maintaining spiritual equilibrium over a 14-month period by women
newly diagnosed with breast cancer.
Initial breast cancer diagnosis and treatment are adverse
Research Approach: Qualitative approach, longitudinal design.
events that may influence a woman's spiritual equilibrium
Setting: Urban breast cancer resource center.
negatively.
Participants: 10 women initially one to five months from diagnosis,
5 of whom attended an eight-week self-transcendence theory-based
The effort that some women must make to resolve spiritual
breast cancer support group.
disequilibrium is increased by adversities other than breast
Methodologic Approach: Audiotaped interviews conducted within five
cancer.
months of diagnosis, two to three months later, and one year after that.
Women maintain and restore spiritual equilibrium by reaching
Narratives were analyzed using Colaizzi's phenomenologic approach.
outward to obtain and give support and by looking inward to
Main Research Variables: Spiritual disequilibrium resolution, breast
examine current self-identity and life priorities.
cancer, self-transcendence.
Findings: Spiritual disequilibrium characteristics, as described in
Sharing the experience with other women with breast cancer
several studies of women with breast cancer, were fear of dying and a
and breast cancer advocacy can be important ways for women
sense of aloneness in a struggle to maintain self-identity. Disequilibrium
to deal with breast cancer.
triggered all participants to reach outwardly for information and support
from other people and faith resources and to reach inwardly to examine
life values. Shortly after diagnosis, and continuing throughout the study
within the context of breast cancer diagnosis and treatment in
period, most participants also reached outwardly to support others and
conduct breast cancer advocacy work.
a subset of 10 women participating in a larger study.
Conclusion: Resolving spiritual disequilibrium for women with newly
diagnosed breast cancer means restoring a sense of connection to self,
Literature Review
others, and/or a higher power. Self-transcendence views and behaviors
evolving over time help women to restore their sense of connectedness,
Kemp (2001) suggested that people who are diagnosed with
maintain hope for a future, and find renewed purpose and meaning.
a life-threatening illness, such as cancer, suffer an increased
Interpretation: An initial breast cancer diagnosis may be associated
sense of meaninglessness and hopelessness that can be relieved
with spiritual disequilibrium that can be as problematic as the physical
by an increase in sense of relatedness, forgiveness, or accep-
effects of cancer and cancer treatment. Women restore equilibrium
tance. Frankl (1963, 1969) proposed that people faced with
through resolving their sense of disconnectedness and regaining a posi-
adversity have an inherent capacity to relate to things outside of
tive self-identity.
themselves and, through reaching out, they find renewed pur-
pose and meaning in their lives. He labeled this capacity self-
transcendence. Reed's (1989, 1991, 1996) conceptualization of
self-transcendence, compatible with that of Frankl, involves
hock and disbelief, fear, uncertainty, a sense of intense
S
expanding personal boundaries beyond the immediate or con-
aloneness and isolation, and loss of control reflect a
stricted view of self and the world as well as extending oneself
spiritual disequilibrium that occurs because cancer dis-
beyond personal concerns and taking on broader life perspec-
rupts people's lives at least temporarily and perhaps perma-
tives and purpose. The conceptual framework guiding this
nently (Coward, 1997). Nurses observe differences in the
manner that people resolve the spiritual impact of cancer on
their lives. Knowledge of how some people restore spiritual
Doris Dickerson Coward, RN, PhD, and David L. Kahn, RN, PhD,
equilibrium may help oncology nurses to assist people who
are associate professors in the School of Nursing at the University
of Texas at Austin. This research was funded by the ONS Foundation
are having trouble getting their lives back on track after can-
and the University of Texas at Austin. (Submitted November 2002.
cer. This study explored the experience of resolving spiritual
Accepted for publication August 30, 2003.)
disequilibrium, defined as an uncomfortable sense of discon-
nection from self, others, and, sometimes, a higher power,
Digital Object Identifier: 10.1188/04.ONF.E24-E31
ONCOLOGY NURSING FORUM VOL 31, NO 2, 2004
E24
helped to alleviate the negative impact of cancer on spiritual
study was that the development over time of self-transcen-
equilibrium. Therefore, the purposes of this study were to
dence views and behaviors may describe how women with
Explore, during a one-year period in women newly diag-
newly diagnosed breast cancer resolve the negative impact of
nosed with breast cancer, the experience of spiritual dis-
cancer on their spiritual equilibrium.
equilibrium resolution.
Four qualitative studies with women several years after
Compare that experience among women who did and did
breast cancer diagnosis reported that women experienced
not participate in an eight-week closed support group based
spiritual disequilibrium before finding increased meaning or
on self-transcendence theory.
transformation within the context of cancer. Nelson (1996)
studied nine women (aged 3869) two to six years after diag-
nosis and treatment. Spiritual disequilibrium was manifested
Methods
by hopelessness and depression, grief over real and imaginary
losses, and fear of recurrence and early death. Women's
A longitudinal design and phenomenologic approach were
struggle to find meaning was not relieved by the passage of
used with a subset of women from a quasi-experimental pilot
time but was helped by relationship support and redefining
study. The larger sample study (Coward, 2003) examined
what was most valued in their lives. Pelusi (1997), in her
patterns of effectiveness of participation in a theory-based
study of eight women (aged 3470) 215 years post-therapy,
breast cancer support group on self-transcendence views and
also described an uncertain future and many losses as anteced-
behaviors and well-being. As women were recruited into the
ents to a survivorship process that included helping others,
quantitative study (N = 41), they were asked to consider dis-
locating resources for self, and increasing interest in maintain-
cussing their experience with the researcher. The first five
ing health. Utley (1999) interviewed eight women (aged 65
women enrolled into each of the intervention and comparison
77) 5.529 years postdiagnosis. Initially, the women experi-
groups who agreed (n = 10) contributed narrative data at the
enced shock because they did not feel sick. In these women's
same time they completed the study questionnaire. Data were
past experiences, cancer meant suffering and death; therefore,
collected at three time points: when each woman entered the
they anticipated the same for themselves. However, their sur-
study (time [T] 1), after the eight-session support group (two
vival encouraged them to reach out to do more for themselves
to three months after baseline data collection for comparison
and others and to attach positive meaning to the event.
group women) (T2), and one year after T2 (T3).
Taylor's (2000) 24 study participants (aged 3970, 227
Institutional review board approval was obtained before the
months after initial diagnosis or recurrence) described the
study began. Potential participants were referred by survivor
following characteristics of spiritual disequilibrium: a deep-
volunteers at a breast cancer resource center and by nurses in
ening sense of vulnerability, viewing death as an approaching
local oncology settings.
threat, a disrupted life, and a negative impact on their families.
Procedures
Activities such as religious services and support groups, as
well as reading, deep introspection, and respecting the heal-
Consent was obtained from participants prior to data collec-
ing action of time, assisted women during a process of find-
tion. Most of the 30 narratives (three from each participant)
ing positive meaning from their experience.
were audiotaped by the primary investigator during half- to one-
In a phenomenologic study of self-transcendence in five
hour interviews in participants' homes. (Three participants
women with advanced breast cancer two to seven years post-
chose to write about their experiences for one or more of their
diagnosis, participants recalled loss of self-confidence, de-
interviews.) At T1, women responded to the question, "Within
pression, and fear of dying during the period of initial diagno-
the context of having breast cancer, what is difficult for you and
sis (Coward, 1990). Women described the great effort
what helps you feel better? Please describe your thoughts and
required to reach inwardly or outwardly in the several ways
feelings as completely as you can." Women responded to the
that resulted in increased appreciation of their environment,
same question at T2 and T3 but described cancer-related expe-
ability to accept help from and give help to others, and abil-
riences since the date of the most recent previous interview.
ity to accept their situation. They also found new purposes to
Analysis
pursue when they no longer could participate in activities that
previously helped to make their lives meaningful.
Audiotapes and participant-written narratives were tran-
In summary, several studies have identified characteristics of
scribed verbatim, edited, and printed for analysis. Data were
spiritual disequilibrium in women with breast cancer and have
analyzed separately for each time point. The analysis process
described how women found hope and positive meaning in
w a s guided by the steps of phenomenologic analysis
their cancer experience. All studies were one-time interviews,
(Colaizzi, 1978).
sometimes conducted years after initial diagnosis. Little is
1. Each narrative was read several times.
known about the actual experience over time of resolving spiri-
2. Statements related to spiritual disequilibrium and resolu-
tual disequilibrium that results from initial diagnosis and treat-
tion were highlighted.
ment of breast cancer. Additionally, little is known about how
3. Meanings were formulated from the highlighted statements.
participation in support groups that promote self-transcendence
For example, the following sentences from a subject's nar-
views and behaviors may help to resolve spiritual disequilib-
rative were abstracted into a more general meaning.
rium. Several experimental studies have documented the ben-
eficial impact of support group participation on the spiritual
[The evening I heard my diagnosis] I immediately went
health of people with cancer (Cunningham & Edmonds, 1996;
to a friend's house for the night. The next night I started
Hawks, Hull, Thalman, & Richins, 1995). The current study's
feeling very anxious and I called a friend in California.
primary investigator's clinical experience and pre-experimen-
And she stayed with me [on the telephone] for a couple
tal research (Coward, 1998) indicated that group mutual support
of hours. The next day, she sent me a huge bouquet of
ONCOLOGY NURSING FORUM VOL 31, NO 2, 2004
E25
Table 2. Individual Study Participants
flowers. I'm a single woman living alone, and being
alone has been a problem for me, so I felt her presence
Time Since
in the room when I got the bouquet. I needed to feel the
Diagnosisa
Occupation and Recent
Participant
Age
presence of someone.
Pseudonym (Years)  (Months)
Personal History
The meaning was that her normal pattern of feeling alone
1.5
Oncology nurse; recent arrival in state
Donna
40
was intensified by hearing her cancer diagnosis; immedi-
with husband and young child
ately reaching out to friends generated comfort.
Academic administrator; recently moved
Susan
47
3.0
4.
The study coinvestigator read the narratives several times,
to area with husband and teenage daugh-
reviewed the other investigator's choices of significant
ter
statements and meanings, clarified some of them, and
1.0
Homemaker and freelance writer; lives
Ciele
49
pointed out additional interpretations of the data.
with husband and college-age daughter
5.
The meanings were organized, with a doctoral student's as-
Academic; Asian American, lives alone,
Carole
49
3.5
sistance, into theme clusters that captured the essence of
only child away at college
participants' experiences at each time point.
3.5
Medical technologist in an oncology prac-
Irene
51
6.
The theme clusters were used to develop a detailed descrip-
tice; lives with husband and teenage son
tion of the longitudinal experience of spiritual disequilib-
Homemaker; African American, lives
1.0
Chris
53
rium resolution.
alone, four grown children in area
7.
The description was integrated into a statement of the fun-
Homemaker; lives with husband whom
Virginia
56
2.0
damental structure of the phenomenon.
she recently learned is unfaithful, newly
8.
To enhance the credibility of the analysis, the fundamen-
married son and daughter-in-law in area
tal structure statement was reviewed by six study partici-
5.0
Artist; lives with unmarried adult son,
Karen
64
pants who agreed that it did describe their experience.
husband and two grandchildren died in
Feedback was not obtained from four participants (one had
auto accident two years ago
died, one moved and left no forwarding address, and two
1.0
Nurse educator; lives alone, recently
Ellen
64
did not respond to phone messages).
placed her elderly mother in a nursing
home
Study Findings
3.0
Business trainer and consultant; lives with
Lois
71
husband, estranged from only child
--
The 10 participants ranged in age from 4071 years (X =
a
Time since diagnosis was measured at time 1.
54.5). All participants initially were one to five months be-
yond diagnosis of stage I or II breast cancer. Table 1, which
presents participant characteristics by study group, reveals the
Study Themes
similarities in demographic and disease characteristics. Table
Study findings are presented in increasing order of abstrac-
2 presents participant pseudonyms and contextual data.
tion from theme clusters at each data collection time point (see
Figure 1) to a detailed description of spiritual disequilibrium
Table 1. Participant Characteristics
resolution to the statement of the fundamental structure of the
phenomenon. Examples from individual participant experi-
Support Group
Comparison Group
ence clarify each theme within a cluster. Findings are not pre-
Characteristic
(n = 5)
(n = 5)
sented by study group because few differences existed in ex-
periences of women regardless of whether they participated in
Age (years)
Range = 4064
Range = 5171
the intervention.
--
--
X = 49.8
X = 59
At the time of diagnosis: Formulated meanings from the T1
Education (years)
Range = 1622
Range = 1022
--
--
significant statements were organized into themes representing
X = 18
X = 17
--
participants' experience 15 months postdiagnosis (X = 2.5
Time since diagnosis (months)
Range = 15
Range = 1 4
--
--
X = 2.8
X = 2.1
months). Participants described shock, fear of dying, a sense of
aloneness that compelled them to reach out for information and
Characteristic
n
n
support, and a desire to help others or feel needed by others to
maintain their sense of self-identity. Carole expressed shock
Race or ethnicity
and then panic so severe that she could not hear anything else
Caucasian
4
4
her surgeon said. Her thoughts at that moment were similar to
Asian American
1
African American
1
those of other participants, "How am I gonna die? And how
Relationship status
long am I gonna live? . . . Breast cancer, in a way, defined what
3
3
Married
I'm going to have to deal with the rest of my life."
2
2
Single
Although women expressed aloneness or isolation related to
Breast cancer treatmenta
their disease, many also reported preexisting sources of exis-
4
4
Mastectomy
tential aloneness (see Table 2). Carole felt isolated from her
Lumpectomy
1
1
own body. But she also added, "Actually, it's not just breast
Radiation
1
3
cancer that I have. Breast cancer hits you around the age of 50
Chemotherapy
4
2
and it's about the time your children move away and it's about
the time your body starts changing and it's sort of a transition
N = 10
period."
a
Participants could have undergone more than one type of cancer treatment.
ONCOLOGY NURSING FORUM VOL 31, NO 2, 2004
E26
and positive attitude got her through surgery. She, like Lois,
Time of Diagnosis
wanted to tell others: "I hope I can benefit something out of
Shock and fear of dying
it by talking to others how I went through it. Because it wasn't
Sense of aloneness
only the doctor that was there [during her surgery]. It was God
Trying to maintain self-identity
that was there."
Compelled to reach out for information and support
Helping others and feeling needed helped women to main-
Desiring to help others or feel needed by others
tain their self-identity and distracted them from feelings of
Four to Seven Months Postdiagnosis
aloneness. Lois derived self-worth from witnessing and con-
Feeling more like their former selves
tinuing to teach management skills. When Carole was not in-
Importance of supportive relationships
teracting with her students or other faculty, she felt isolated
Changes in insight facilitated behavioral changes.
and more frustrated with physical limitations resulting from
Fears about recurrence
reconstructive surgery. Donna revealed, "My six-year-old has
1418 Months Postdiagnosis
continued to be himself, but that is supporting. His demands
Finding ways to prevent recurrence
and needs for attention keep me fixed in reality and sane."
Defining a new normal self
In summary, fear of dying, other cancer unknowns, and a
Change in priorities and relationships
sense of aloneness compelled study participants to call upon
Figure 1. Theme Clusters
friends, family, faith resources, and their own inner resources
for information and support and to maintain their own sense
of self-worth. Even at this early stage in their cancer journey,
Reaching out for support and information helped women to
some participants found positive support and meaning through
relieve panic and aloneness. Carole, comforted by reaching out
their contacts with other women with breast cancer.
to friends, also re-engaged in her passion for ballroom dancing.
Themes four to seven--
months postdiagnosis: By the time
She explained, "I knew if I could keep myself happy and cheer-
of the second interview (X = 5.2 months since diagnosis), al-
ful, I could get through it." Virginia, believing that information
would help to relieve her fear, immediately called a breast
though women felt less frightened and more like their former
cancer survivor friend who sent her that same day to the breast
selves, they continued to express the importance of support-
cancer resource center. "I went down there with my head hang-
ive relationships. Some self-change was noted, and fears
ing low, but I left with it up high and not feeling so bad and
about recurrence were expressed. Carole felt better because
alone. Knowing that both those ladies [survivor volunteers]
her physical condition had improved. Lois wrote that her
had gone through cancer and they were both, you know, very
physical recovery was almost complete but added that she
healthy." Susan reached out to current and former church com-
vividly remembered the shock of her diagnosis. Donna main-
munities and was surprised by people from her new church
tained her self-identity with help from her young son. She
who "reached out in love in a way that was totally unexpected.
said, "My six-year-old's demands help me still feel like a
And my previous church reached out as if we had never left."
mom."
Lois contacted her estranged adult son to ask his church to in-
For several women, returning to normal was associated with
clude her in prayer sessions. Chris and Ciele appealed directly
career self-identity. Carole was "excited about getting back to
to their faiths. Chris said, "I was upset, but I didn't claim it. I
teaching and research and to a more structured life." Karen,
put it into God's hands." Ciele said, "I really gave it all over to
referring to a recent intensive workshop for artists that she at-
God: `I don't know what to do, but I trust that you will help me
tended in Seattle, WA, stated, "It was very satisfying to know
figure it out.' It was at that point I found the energy [to research
I haven't lost it; my creativity and the ability to produce un-
treatment options]."
der stress is still there." Donna, who was not working during
Participants also extended themselves to help others. Karen
her treatment, was pleased that her support group helped her
first said how much she appreciated gifts of food from friends
"still have a chance to be a little bit of a nurse." She also
after her husband and grandchildren died and after her bilat-
viewed her online cancer support group as an opportunity to
eral mastectomy. She then remarked, "Interestingly, I have a
answer questions for others. Irene's own chemotherapy expe-
friend who had a breast removed; she just went home yester-
rience helped her and her coworkers to better understand why
day, and my first thought was, `I can do something for her.'"
they should "get lab results out quickly and to make sure they
Irene reached out to make friends with two women with breast
are accurate." Lois described her business as her "best heal-
cancer (one was Chris) at her oncology treatment center. "We
ing process." Ellen experienced a threat to her identity when
basically formed our own support group of three." Lois was
a perhaps well-meaning administrator pulled her out of her
angry with God at first because he let breast cancer happen to
usual clinical assignment even though her physician had
her. "Then I got scared that I better not be so arrogant, and I
cleared her to work. She wrote, "[This was] a devastating
bargained with him, `If you'll just take me off the hook, I will
message of `professional nonworth' that I have not been able
tell no less than one million women about getting themselves
to overcome."
to the doctor in time.'" Lois began her witnessing at a
Supportive relationships with other women with breast can-
Mother's Day service at her son's church. She talked not only
cer were of prime importance. Susan, Donna, Carole, Ciele,
about God reminding her to schedule her mammogram and
and Karen experienced the theory-based intervention support
her subsequent successful surgery, but also about how her
group. (Intervention session activities are detailed in Coward,
family was reunited after eight years of estrangement. Chris
2003.) Susan was surprised at how much care she developed
was sure that something was wrong with her breast, but it was
for her support group members. Donna, as did Susan, found
a year before she was diagnosed. Throughout her interview,
that her group made her "feel like I am not the only one hav-
she told the researcher to tell others to be persistent and obtain
ing some of the feelings that I've had." Carole, Ciele, and
second opinions if necessary. Chris also believed that her faith
Karen derived benefit by comparing themselves favorably to
ONCOLOGY NURSING FORUM VOL 31, NO 2, 2004
E27
diagnosis, they also reported changes in views and behaviors
other members: Carole and Ciele because they did not need
indicative of expansion of self-concept boundaries. Ongoing
chemotherapy, and Karen because she was not burdened by
relationships with their faith communities and God, family,
working and caring for young children while receiving che-
friends, and other women with breast cancer provided oppor-
motherapy.
tunities to receive and give support. Concern about cancer
With the exception of Ellen, women from the comparison
recurrence kept women from feeling safe.
group who did not receive the study intervention also de-
Themes 1418 months postdiagnosis: By the time of the
scribed valued relationships that they developed with other
--
third interview (X = 16.5 months since diagnosis), women
women with breast cancer. Irene formed a close friendship
were finding ways to prevent recurrence, identifying them-
with one woman in her "support group of three."
selves differently from their previously normal selves, and
I went to radiation first, and she had chemo first. I answer
changing priorities and relationships as a result of having
her questions about radiation. And she understands where
breast cancer. Although their experience was, in some ways,
I'm coming from. We talked about the loneliness and
similar to what they described four to seven months after their
what you actually face and that no matter who you dis-
diagnosis, women now were more sure of themselves and
cuss it with, they don't understand it unless they've done
their places in their world.
it themselves.
Although they described feeling anxious around the time
For Chris, Irene and the other woman were the "best things
of their first anniversary follow-up, women felt safer from re-
that could ever happen" to her, not just for sharing informa-
currence the further they were from time of diagnosis. All de-
tion but also for laughing together while comparing surgery
scribed steps that they were taking to lessen their chances of
scars, shopping for wigs and hats, and simply being positive.
recurrence. Lois depended on her pact with God to keep her
Relationships with God, friends, family members, and even
healthy. Chris maintained a positive attitude and kept active
casual contacts were sources of support and opportunities to
to prevent a recurrence but said that her faith would help her
provide support. Chris' new "chemo" friends may have kept
to accept an eventual recurrence. Everyone, except Irene and
her "going and laughing and enjoying life," but God was pri-
Ellen, reported setting goals for themselves to stay mentally
mary because he was there for her when others were not.
positive and physically active. Virginia, Susan, and Ciele felt
Ciele's help came from her two breast cancer support groups,
threatened when friends had recurrences. However, Virginia
her family, and her struggling relationship with God. Her
noted that two of her church friends with recurrences were
struggle was, "How do I live my life each day in the present
models for being "strong and still encouraging the rest of
moment with some sense of joy, and not just going and doing,
us."
and trust God enough to help me do that?" Virginia continued
Women self-identified differently than they did at the ear-
to be uplifted by her circle of friends who loved her. Although
lier interviews. For some women, their new normal was asso-
exhausted by chemotherapy, Virginia made the effort to be
ciated with new behaviors. Carole, who earlier described her-
among friends because of the energy they gave her. She be-
self as a "loner," now had a live-in companion. Carole's
lieved that her friends purposely "kept her in motion" so she
insight into her own needs helped her to better state her feel-
would not be depressed. Karen talked about the renewed en-
ings within that relationship. Ciele, now more accepting of her
ergy she received from visiting old friends in Seattle. Donna
own and others' faults, said, "If it's not life threatening, how
spoke of a somewhat unusual source of support. "When you
important is it really?" She also conserved her energy so that
go to the grocery store and someone says, `have a nice day,'
she could act out her new priorities. Ellen expressed pleasure
you know you usually just blow it off. Well, I take that now.
and renewed sense of self-worth because both her surgeon and
I say, `thank you,' and I take it because I need it."
a coworker disclosed that she had been a model to others for
Several women reported changes in values that facilitated
how to handle cancer treatment. Irene described driving alone
behavioral changes. Carole recognized that she needed a com-
on a long trip to her home state of Tennessee as an emotional
panion and had started to date a man she met at dance class.
high that left her believing again that she had a future. She
Although it was important to Donna to "still feel needed," she
wrote, "I don't know what that future is, or how it will be al-
was beginning to understand and accept the need of others to
tered, but I think I can accept any compromises that will be
help her. The insight of Irene and her coworkers about the
required." Irene had not mentioned her faith in previous inter-
importance of laboratory results led to more careful blood
views, but she may have rediscovered it. She wrote that her
laboratory assessments. Ciele described being more assertive
return to Tennessee made her realize why the Smoky Moun-
in pursuing treatment options, looking for ways to be healthy,
tains were so important to her. She quoted Psalm 121, "I lift
and setting priorities for her use of time.
my eyes to the hills. From whence does my help come? My
Now that most women were finishing treatment successfully,
help comes from the Lord."
they gave voice to fears about recurrence. Carole's oncologist
Detailed Description of Spiritual Disequilibrium
did not believe that her "good natured" tumor required tamox-
Resolution
ifen treatment, but she began taking it because she wanted to do
everything possible to prevent a recurrence. Lois, Ciele, Karen,
Characteristics of spiritual disequilibrium related to diagno-
and Chris described usually feeling safe, but each experienced
sis of breast cancer were similar for all 10 women. Fears of
nagging fear. As Lois wrote, "Once cancer strikes, the body is
dying and aloneness associated with having a life-threatening
vulnerable to a repeat occurrence. I find myself in a state of fear
condition threatened the maintenance of their self-identity as
one moment then reassurance the next."
healthy and productive women. Most participants revealed
In summary, by the time most women completed breast
additional concurrent sources of spiritual disequilibrium.
cancer treatment, although they had experienced return to
Attempts to resolve spiritual disequilibrium began early in
their physical, emotional, and career-identified selves prior to
the diagnostic and treatment period. All but two participants
ONCOLOGY NURSING FORUM VOL 31, NO 2, 2004
E28
reached out immediately to other people and/or God for support
Treatment effects, as well as disruption of support resources
or information to relieve their sense of fear and aloneness.
for reasons unrelated to cancer, increase the effort that some
Each woman described the comfort and sense of connection
women must make to restore confidence in their bodies and in
she received after reaching out. One participant, choosing to
their sense of future. More than a year after diagnosis, women
not immediately worry friends or family, found that her
continued to contemplate their own vulnerability. Restoring
surgeon's "sincere, respectful, and caring concern" gave her
self-identity and confidence in their ability to live meaning-
"the courage to face the situation with a positive attitude."
fully involves faith in God, learning from others' experiences,
Most women, early in their diagnosis and treatment course,
finding an individual recipe for staying healthy, and using
found that helping others helped to maintain their own self-
personal experiences to help others detect and survive breast
identity. Continuing to honor work or childcare commitments
cancer.
also preserved a sense of normalcy and served as a means to
Discussion and Interpretation
redirect self-worry. Helping other women with breast cancer
directly, or advocating in general for screening and better di-
This study explored the experience of spiritual disequilib-
agnosis, helped to create meaning. For some women, discov-
rium and resolution over time and within the context of the
ery of meaning happened after treatment. One woman found
potentially life-threatening event of cancer. Participants de-
meaning and restoration of self-worth more than a year later
scribed their positive and negative experiences with breast
when learning that she was an inspiration to her surgeon and
cancer diagnosis and treatment. Although women were not
coworkers.
asked directly about spiritual matters, their responses indi-
Connections with God and others continued to be support-
cated that their diagnosis activated spiritual concerns such as
ive and provided opportunity to give support throughout the
fear of dying, sense of aloneness, and disrupted self-concept.
study time period. Five participants' ongoing relationships
Other negative life events interfered with some women's abil-
with God or their church communities helped them to over-
ity to regard their cancer diagnosis as a major threat to their
come fear and aloneness. All but one participant formed help-
spiritual equilibrium. However, all study participants experi-
ful relationships with other women with breast cancer. Such
enced a sense of vulnerability and existential aloneness that
relationships provided opportunities to share experiences and
was frightening to them. Most women reached out immedi-
problem solve with others who were empathetic and knowl-
ately after diagnosis for information and support that, when
edgeable. The one participant, although she did not describe
obtained from a variety of sources, helped them to normalize
connections with other women with breast cancer during the
their experience and to feel better spiritually.
study, later joined a breast cancer support group in which she
Data analysis and interpretation were complicated and time
remains active.
consuming because of the longitudinal nature of the data and
Preserving or returning to normalcy was associated with
the desire to observe similarities and differences among
increased understanding that normal was not the same as be-
women who did and did not participate in the theory-based
fore their cancer diagnosis. Women regained their self-iden-
support group. Findings from this small group of women are
tity as physically and mentally healthy people with work, fam-
not meant to be generalized but rather illuminate the lived
ily, and social roles to fulfill. But, as one woman described,
experience of a complex phenomenon that evolves over time
her physical body was different and her life values had
and may be common to other women who are diagnosed with
changed from a focus on her career to a commitment to spend
breast cancer.
more time on herself and with her family.
Few discernible differences existed among participants in
Reaching outwardly and inwardly led to changes in priori-
the intervention and comparison groups in demographic and
ties and relationships with God and others. During the course
disease characteristics or in their experience of spiritual dis-
of the study, women became more aware of personal needs
equilibrium resolution. Participants in the support group inter-
and were more assertive on their own behalf and for others.
vention found that other group members were a powerful re-
Although women were less fearful of cancer after completing
source. Sharing experiences (and sometimes crying together)
treatment, most expressed concerns about recurrence. Meet-
helped them to cut through what one called "the superficial
ing other women with recurrent cancer and the approach of
stuff" to make connections that eased confusion and helped
their own cancer anniversary were occasions for worry. Reli-
them feel not so alone. However, women in the comparison
ance on faith in God and in their own behavior increased their
group made similar meaningful connections with other
hope for survival. Maintaining their faith and doing good
women with breast cancer. Some women from both groups
works increased women's confidence in their ability to stave
drew on their faith for support and found comfort from God
off recurrence, as did making lifestyle changes related to
and fellow church members. Women in both study groups
physical activity, nutrition, and stress reduction.
also found meaning in witnessing for improvement in detec-
tion and treatment of cancer and were successful in maintain-
The Fundamental Structure of Spiritual
ing or regaining their self-identity. Women in both groups
Disequilibrium Resolution
participated equally in church and social groups, including
other cancer support groups.
Spiritual disequilibrium in women with breast cancer is
Women's experiences in this longitudinal study were simi-
characterized by fear of dying and of other unknowns associ-
lar to those of women with breast cancer in other qualitative
ated with cancer and a sense of aloneness in a struggle to
studies (Halstead & Hull, 2001; Nelson, 1996; Pelusi, 1997;
maintain current self-identity. Spiritual disequilibrium com-
Taylor, 2000; Utley, 1999). Findings from all studies indicate
pels women to reach outwardly toward their faith and other
that a breast cancer diagnosis is accompanied by senses of
people for support and information to decrease their fear and
fear, loss, and vulnerability and threatens women's self-con-
aloneness and to reach inwardly for strength and to examine
fidence as healthy, social beings with identified purposes and
previous life values.
ONCOLOGY NURSING FORUM VOL 31, NO 2, 2004
E29
sources of meaning in their lives. Women, by reaching out to
such as people they did not know well or did not know at all.
their God or church communities, families, and friends for
Even a simple gesture, such as a smile from a nurse walking
support and information, maintained or regained spiritual
by the outpatient waiting room, can have unanticipated posi-
equilibrium and found purpose and meaning from the expe-
tive meaning to someone who is feeling lonely. When appro-
rience. Similar resources for developing meaning were re-
priate, starting a dialogue with a woman about fear and isola-
ported by people with cancer in O'Connor, Wicker, and
tion related to cancer may help to normalize that woman's
Germino (1990). Relationships with other women with
experience and help her to feel as though she is not alone.
breast cancer were described as especially helpful in this and
Although nurses may discuss various spiritual concerns at
other studies (Cope, 1995; Pelusi). Altruism as a resource
the time of diagnosis, women go through the process of
for creating meaning was described in terminal illness
awareness and resolution of spiritual disequilibrium at their
(Coward, 1990, 1994; Yalom, 1982) but not as occurring
own pace. The nurse, at each point of contact, can encourage
early in a disease process. In the first months of their cancer
women to consider the significance of cancer in their lives and
journey, women in this study shared experiences and prob-
to suggest that other people find that this time is an opportu-
lem solved with others, witnessed about how faith helped
nity to clarify what is most meaningful to them.
them to survive cancer treatment, and encouraged others to
Although each woman's breast cancer experience is unique,
be assertive with healthcare providers. Such activities pro-
other women do share similar concerns. Sharing experiences
vided participants with a renewed sense of purpose and
related to breast cancer not only helps women to normalize
served as a means to create personal meaning that was spiri-
their experience but also provides them with opportunities to
tually healing.
assist others to achieve better spiritual and physical outcomes.
Participants also engaged in introspection to clarify per-
Nurses can maintain an "on-call" list of women who offer to
sonal values related to work and social roles. Clarifying, and
support others with breast cancer. Another resource is a cur-
sometimes modifying, beliefs and behaviors relieved spiritual
rent list of cancer support groups that includes a group contact
distress through restoring a sense of control, self-confidence,
person. Women have differing needs for group support, and
and hope for the future. New insights also facilitated commu-
groups vary in purpose and encouragement of peer group in-
nication within important relationships with God, family, and
teraction (Cunningham & Edmonds, 1996; Fobair, 1996).
friends that helped participants to restore a sense of purpose
Helping women access information about group focus and
and meaning in their lives. That an adverse life event can ini-
leadership provides a model of supportive behavior on the part
tiate a search for meaning was the focus of Frankl's (1963)
of the nurse and aids reluctant or overwhelmed women to
work and cancer research by nurse researchers and social psy-
more easily seek out further details.
chologists (Dow, Ferrell, Haberman, & Eaton, 1999; Lewis,
Some women may be receptive to a group that combines art
1989; O'Conner et al., 1990; Steeves & Kahn, 1987; Taylor,
and peer support. A source of spiritual healing in two recent
1983, 1995, 2001; Thompson & Janigian, 1988; Thompson &
studies was the sharing of experience among women with
Pitts, 1993).
breast cancer while expressing feelings about cancer in a piece
Expanding self-conceptual boundaries through introspec-
of art (Heiney & Darr-Hope, 1999; Predeger, 1996). Findings
tion and reaching out to accept and give support are charac-
from the current study and Swirsky (1996) also suggest that
teristics of self-transcendence (Reed, 1996; Frankl, 1969).
referring women to resources for breast cancer advocacy pro-
Erikson (1963) proposed that gradual evolutions of meaning
vides an environment for support and communication that is
develop over the life span toward a "generativity" stage exem-
healing.
plified by self-transcendence activities. However, the diagno-
Research Recommendations
sis of a potentially life-threatening condition may precipitate
a reaching out and an evaluation of previous life goals and
sources of meaning at any age (Thompson & Pitts, 1993). As
Most of the women with breast cancer in this and the other
such, a cancer diagnosis may be a pivotal life event in that
studies were well-educated Caucasian Americans. The Afri-
decisions made in the context of diagnosis and treatment may
can American participant, at each data-collection time point,
have far-reaching consequences for healing (Coward, 1997;
discussed the primary importance of her relationship with
Coward & Reed, 1996; Taylor, 1995).
God. Lackey, Gates, and Brown (2001) also reported that
Women relied on their faith in God and on their own intu-
prayer and reliance on God's healing power relieved African
ition to maintain good health and prevent recurrences. Such
American women's fears about death from breast cancer. Is
actions enhanced their sense of control and increased their
faith a primary resource for all African American women?
hope in a healthy future. A recent review of recurrence and
How is spiritual disequilibrium experienced and resolved in
survival outcomes associated with health behavior and psy-
women who are less educated or from other ethnic groups and
chological interventions indicated that, although no survival
in other countries? Some work has been done on finding
benefits have been reported from the as-yet small database,
meaning with women with breast cancer in Denmark (Jensen,
several studies in women with breast cancer reported better
Back-Pettersson, & Segesten, 2000), England (Luker, Beaver,
functional status associated with positive diet and exercise be-
Leinster, & Owens, 1996), and Taiwan (Chiu, 2000), but more
havior change (Andersen, 2002).
is needed.
Women's successful strategies for resolving spiritual dis-
Implications for Nurses
equilibrium will be used in future community support group
intervention studies. However, relatively few people partici-
pate in such groups and those who do primarily are middle-
The study findings have several implications for oncology
nurses. Women in this study were surprised and pleased when
class Caucasian women (Barg & Gullatte, 2001; Krizek, Rob-
emotional or spiritual support came from unexpected sources
erts, Ragan, Ferrara, & Lord, 1999). Other group interventions
ONCOLOGY NURSING FORUM VOL 31, NO 2, 2004
E30
need to be studied, such as church-centered groups, single-
nosed with breast cancer to resolve their sense of disconnected-
culture groups (e.g., Sisters Network for African American
ness from themselves, others, and their faith. In so doing, nurses
women), and chemotherapy center groups organized around
may have a positive impact on women's sense of hope for their
patient appointment times or social events.
future and in renewed purpose and meaning in their lives.
Journalist Marc Barasch (1993) wrote that when he was diag-
The authors wish to thank Betty Samford Fair, RN, PhD, for her assistance
nosed with cancer, his doctor said, "First take care of the physi-
with data analysis and the women with breast cancer who so willingly shared
cal problem and then you can go back to worrying about your
their fears and joys so that others could learn from their experiences.
inner life" (p. 16). Barasch argued for the exact opposite. In such
moments of crisis, he believed that what is most needed is to
Author Contact: Doris Dickerson Coward, RN, PhD, can be
fully experience what is happening and make it a part of a larger
reached at dcoward@mail.utexas.edu, with copy to editor at rose_
process of becoming. Oncology nurses can assist women diag-
mary@earthlink.net.
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