Surviving Breast Cancer and Living with Lymphedema: Resiliency among Women in the Context of Their Families
Identifieur interne : 004549 ( Istex/Corpus ); précédent : 004548; suivant : 004550Surviving Breast Cancer and Living with Lymphedema: Resiliency among Women in the Context of Their Families
Auteurs : M. Elise Radina ; Jane M. ArmerSource :
- Journal of Family Nursing [ 1074-8407 ] ; 2004-11.
Abstract
This study involves secondary analysis of an existing qualitative dataset (in-depth interviews with survivors [n = 6] and health professionals [n = 2], observations of a support group [n = 3], and field notes). Based on previous findings from this dataset, new questions arose regarding why only some of post–breast cancer lymphedema women who were interviewed appeared resilient within the context of their families. In the present study, we reinvestigate this dataset using the resiliency model of family stress, adjustment, and adaptation to guide our investigation via the construction of an a priori template used in analyses. Three stressors are identified that contribute to the vulnerability of these women. Resiliency in the women is characterized as adjustment, adaptation, or crisis. The present findings provide a foundation for assisting women with lymphedema and their families and underscore practitioners’ need to serve the patient and the family.
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DOI: 10.1177/1074840704269847
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Elise" last="Radina">M. Elise Radina</name><affiliation><mods:affiliation>University of Northern Iowa</mods:affiliation></affiliation><affiliation><mods:affiliation>University of Northern Iowa</mods:affiliation></affiliation></author><author><name sortKey="Armer, Jane M" sort="Armer, Jane M" uniqKey="Armer J" first="Jane M." last="Armer">Jane M. 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In the present study, we reinvestigate this dataset using the resiliency model of family stress, adjustment, and adaptation to guide our investigation via the construction of an a priori template used in analyses. Three stressors are identified that contribute to the vulnerability of these women. Resiliency in the women is characterized as adjustment, adaptation, or crisis. The present findings provide a foundation for assisting women with lymphedema and their families and underscore practitioners’ need to serve the patient and the family.</p></abstract><kwd-group><kwd>lymphedema</kwd><kwd>resiliency</kwd><kwd>family-context</kwd><kwd>breast cancer</kwd></kwd-group><custom-meta-wrap><custom-meta xlink:type="simple"><meta-name>sagemeta-type</meta-name><meta-value>Journal Article</meta-value></custom-meta><custom-meta xlink:type="simple"><meta-name>search-text</meta-name><meta-value>
10.1177/1074840704269847
JFN, November 2004, Vol. 10 No. 4Radina, Armer / Surviving Breast Cancer
Surviving Breast Cancer and Living
With Lymphedema: Resiliency Among
Women in the Context of Their Families
M. Elise Radina, Ph.D., C.F.L.E.
University of Northern Iowa
Jane M. Armer, Ph.D., R.N.
University of MissouriColumbia
This study involves secondary analysis of an existing qualitative dataset (in-
depth interviews with survivors [n = 6] and health professionals [n = 2],
observations of a support group [n = 3], and field notes). Based on previous
findings from this dataset, new questions arose regarding why only some of
postbreast cancer lymphedema women who were interviewed appeared
resilient within the context of their families. In the present study, we reinves-
tigate this dataset using the resiliency model of family stress, adjustment,
and adaptation to guide our investigation via the construction of an a priori
template used inanalyses. Three stressors are identified that contribute to the
vulnerability of these women. Resiliency in the women is characterized as
adjustment, adaptation, or crisis. The present findings provide a foundation
for assisting women with lymphedema and their families and underscore
practitioners' need to serve the patient and the family.
Keywords: lymphedema; resiliency; family-context; breast cancer
Each year, the number of women who experience breast cancer is
increasing (American Cancer Society, 2003). Because of improve-
An earlier version of this article was presented at the 5th International
National Lymphedema Network Conference in Chicago, Illinois.
JOURNAL OF FAMILY NURSING, 2004, 10(4), 485-505
DOI: 10.1177/1074840704269847
© 2004 Sage Publications
485
ments in the technologies used for detection and intervention of
breast cancer, a growing number of these women are faced with
survivorship (Chu et al., 1996) that involves changes in quality of life
related to the after effects of treatments (Ganz, 1999), including upper
extremity lymphedema. Increased attention has recently begun to be
paid to how women who experience this post-breast-cancer
lymphedema(P-BrCa LE)andtheirfamilies copewithsuchtreatment
aftereffects in their daily lives. This literature has found that those
families who report positive outcomes following the onset of P-BrCa
LE demonstrate greater flexibility in their willingness to make adap-
tations to daily household tasks and have established access to suffi-
cient personal and community resources for coping with stress
(Radina & Armer, 2001).
Thepresentstudyinvolvesasecondaryanalysis ofqualitative data
originally collected to investigate the quality-of-life experiences of
these women within the context of their family and social roles (e.g.,
wife, mother, worker, friend). Initial findings from these data pub-
lished earlier (Radina & Armer, 2001) focused on how family struc-
ture and functioning are influenced by the onset of P-BrCa LE. These
initial findings sparked new questions regarding why some women
with P-BrCa LE and their families appeared to be resilient, whereas
others were not faring as well. Thus, we reinvestigated these data
from the perspective of resiliency theory concerning the question of
how the onset of P-BrCa LE, and its related stressors, affected these
women and their families in differing ways.
BACKGROUND
For about one third of women who undergo total and partial mas-
tectomies involving the removal of or irradiation of the axillary
lymph nodes (Ganz, 1999), secondary lymphedema (hereafter, sim-
ply lymphedema) of the arm is likely to develop. This may occur at
any point during the posttreatment lifespan, often ranging from
weeks to years after diagnosis and treatment of breast cancer.
Lymphedema occurs when the lymph nodes under the arm are
removed or damaged, causing a blockage in the transport of lym-
phatic fluid. The result is a buildup of fluid in the surrounding tissue
and along the length of the arm (Lockhart, 1999; Passik, Newman,
Brennan, & Holland, 1993). Acutecases include an increase in arm cir-
cumference beyond two centimeters during a few months' time
486JFN, November 2004, Vol. 10 No. 4
(Armer, 1999; National Cancer Institute, 2002). There is no cure for
lymphedema. At this time, it can only be managed through moder-
ately successful labor-intensive methods, including compression
sleeves and a special type of massage known as manual lymph
drainage (Carter, 1997; Lockhart, 1999).
Lymphedema is one of the most troublesome and chronic long-
term aftereffects of damage to the lymph nodes (Loprinizi et al., 1999)
and breast cancer treatment. The swelling in the arm can be painful,
restricting arm movement and causing formerly simple daily activi-
ties to become difficult (Passik, Newman, Brennan, & Tunkel, 1995;
Tobin, Lacey, Meyer, & Mortimer, 1993). In addition, many women
who experience lymphedema also face increased stress from living
with a constant reminder of the breast cancer and a perceived aban-
donment by medicine (Carter, 1997). Initial findings from the present
data set suggest that some women with P-BrCa LE are coping very
well, whereas others are not (Radina & Armer, 2001). The present
study explores how the onset of lymphedema and related stressors
affect women and their families in their daily lives. Specifically, these
experiences are addressed in terms of what factors determine
resiliency versus crisis.
RESILIENCY MODEL
The present analyses are guided by the resiliency model of family
stress, adjustment, and adaptation (resiliency model; McCubbin &
McCubbin, 1993; McCubbin, Thompson, & McCubbin, 1996). Resil-
iency refers to the positive ways in which families and individuals
functionunderandarechangedbystressful oradversecircumstances
(Boss, 2001; Walsh, 2002). For the purposes of the present study,
the resiliency model is used to analyze individual participants'
descriptions of family-level experiences and processes to gain an
understanding of thefamily contextsin which theyare coping withP-
BrCa LE.
Afundamental assumption of the resiliency model is that stressful
or adverse circumstances do not just affect one member of the family,
but they influence the entire family system (Walsh, 2003). The way in
which families function determines their ability to recover by simul-
taneously holding onto their beliefs and working to maintain or
restore the well-being of individual family members and the family
unit. This approach offers a method for investigating individual (in
Radina, Armer / Surviving Breast Cancer487
family contexts) and family recovery in terms of various family types,
processes, appraisal strategies, supports, problem-solving abilities,
and interactions with the larger community (McCubbin et al., 1996).
The resiliency model (see Figures 1 and 2) is based on five assump-
tions related to family functioning and the nature of the stressful situ-
ations families face. First, families have basic and unique patterns of
daily functioning and strengths that they use to protect themselves
when faced with change. Second, hardships, challenges, and stresses
are natural and often predictable aspects of family life. Third, fami-
lies' patternsof daily functioning and strengths protectfamilies when
dealing with unexpected changes. At the same time, these patterns of
daily functioning and strengths foster families' recovery following
crises and major disruptions. Fourth, families function within the
contexts of their communities. During times of family stress and cri-
sis, families draw from and contribute to community resources and
relationships. Last, families faced with stressful situations and crises
that require change work to restore family balance and harmony
(McCubbin et al., 1996; Walsh, 2003).
The resiliency model offers several factors that influence the fam-
ily's ability to recover from stressful situations, including stressors,
patterns of functioning, resources, and appraisal. A stressor is pres-
sure placed on a family that can produce changes in the way the fam-
ily functions (McCubbin & McCubbin, 1993; McCubbin et al., 1996;
Van Riper, 2001). For example, for families faced with lymphedema, a
stressor may be a mother's inability to complete daily household
tasks, such as vacuuming. This stressor may require the family to
change the way it functions with regard to accomplishing household
tasks. Thus, another family member may need to assume responsibil-
ity for vacuuming or the family may hire someone outside the family
tocompletethetask. Whena family experiencesa numberof stressors
simultaneously (i.e., a pileup of stressors), it may become more vul-
nerable and less resilient (Boss, 2001; McCubbin & McCubbin, 1993;
McCubbin et al., 1996; Van Riper, 2001). For example, families dealing
with P-BrCa LE have already experienced a pileup of stressors in sur-
viving cancer, including decisions about medical treatment, navigat-
ing the health care system, financial strain, and emotional stress.
When faced with lymphedema, those earlier stressors are already
present, and the family is now dealing with labor-intensive treat-
ments, potentially reduced physical functioning, and changes in
daily activities.
488JFN, November 2004, Vol. 10 No. 4
Families have established patterns of functioning that are identi-
fied by the characteristics and behaviors inherent in the way the fam-
ily usually operates. These patterns influence the ability of the family
tocopewithstressful situations. Thatis, families thatemphasizeflexi-
bility in the way they typically function may be better able to cope
with stressful situations than those who are more rigid (McCubbin
et al., 1996).
Family resources include individual, family, and community char-
acteristics and supports that are available to the family to use in times
of stress. Individual-level resources include knowledge, experiences,
and personality. Family-level resources include conflict resolution
skills, economic stability, shared beliefs, and decision-making skills.
Community-levelresources, such as social supportfromfriends, rela-
tives, and health care professionals, are also importantcomponentsof
a family's resources (McCubbin et al., 1996; Van Riper, 2001)
Appraisal refers tothefamily'sbelief systemandthemeaningfam-
ily members assign to particular stressors and how the family as a
unit copes with the stressor. The meanings assigned by a family
depend on a number of factors including the following: spiritual
beliefs, cultural values, shared worldviews, and past experiences
Radina, Armer / Surviving Breast Cancer489
over timeover time
Onset
of LEFamily
VulnerabilitiesPrior Patterns
of Family
Functioning
Family
ResourcesAppraisal:
LE & Its
Severity
Problem
Solving/
CopingFAMILYFAMILYBonadjustment/
Well Adjusted
MaladjustmentMove to Adaptation
Phase (Figure 2)
Pileup:
Stressors
Strains
Transitions
Figure 1: The Resiliency Model of Family Stress, Adjustment, and Adap-
tation: Adjustment Phase
Source: Adapted from McCubbin and McCubbin (1993) and McCubbin, Thompson,
and McCubbin (1996).
Note: LE = lymphedema.
(McCubbin & McCubbin, 1993; McCubbin et al., 1996). For example,
Family Aisdealing withlymphedemaandseesthechronicillness as a
curse for some prior wrongdoing and perceives that their ability to
cope with the new stressor is limited. Family B sees lymphedema as
its higher power's desire to challenge them to grow in new directions
and is therefore confident in its ability to cope with the new stressor.
Family belief systems determine how families approach stressful sit-
uations and may be changed as a result of having dealt with a specific
stressful situation (Reiss, 1981). In this example, both appraisals of
lymphedema and the families' ability to cope may lead to different
approaches to dealing with the stressor. Family A may do nothing,
assuming that the stressor is deserved and nothing can be done. Fam-
ily B may become very involved in learning about treatment options
and modifying its lifestyle to manage possible physical limitations.
There are four outcomes for families in the resiliency model:
adjustment, maladjustment, adaptation, and maladapation. Adjust-
ment and maladjustment are outcomes associated with the adjust-
ment phase (Figure 1) of the resiliency model. Adjustment refers to
situations in which the family's established patterns of functioning
are sufficient to deal with the stressor and remain unchanged as a
result of having encountered the stressor. Maladjustment is the oppo-
490JFN, November 2004, Vol. 10 No. 4
over timeover time
MaladjustmentFamily
CrisisPileup:
Stressors
Strains
Transitions
New Patterns
of Family
FunctioningAppraisal:
Schema/
Meaning
Appraisal:
Family's
Capabilities
Family
Resources
Social
SupportProblem
Solving/
CopingFAMILYFAMILYBonadaptation/
Well Adapted
Maladaptation
Figure 2: The Resiliency Model of Family Stress, Adjustment, and Adap-
tation: Adaptation Phase
Source: Adapted from McCubbin and McCubbin (1993) and McCubbin, Thompson,
and McCubbin (1996).
site extremeof adjustment,where established patternsof family func-
tioning are not adequate and thus change in these patterns is required
for balance and harmony to be restored to the family. The adaptation
phase(Figure2) involvesthosefamilies thathaveexperiencedmalad-
justment. During this phase, families must make the necessary
changes to patterns of functioning to deal with the stressor. Family
appraisal, family resources (including interactions with the commu-
nity), problem solving, and coping influence these changes. The out-
comes are adjustment, where changes to family functioning are suc-
cessful, and maladjustment, where the necessary changes are not
made. Those who experience maladjustment will need to continue
attempting to make changes to patterns of functioning to restore bal-
ance and harmony to the family. Those that cannot do so may remain
in a state of family crisis, and family functioning may deteriorate as a
result (McCubbin et al., 1996).
What makes the resiliency model unique from similar theories is
its emphasis on postcrisis family functioning. With this focus, it offers
possible answers to questions of why some families, or a focal mem-
ber of families, appear to recover quickly and why others seem to
remain vulnerable or deteriorate when faced with stressful situations
(McCubbin et al., 1996). This difference in how women with P-BrCa
LE describe their own and their family's responses to the onset of
lymphedema raised questions for us during the original analysis of
these data. Thus, the following research questions have been derived
from these questions that emerged from original analyses and the
resiliency model for use in secondary analysis of these data:
1. What impact does lymphedema have on the vulnerability (pileup of
stressors) of women with P-BrCa LE? What impact does lymph-
edema have on the vulnerability of families described by women with
P-BrCa LE?
2. If vulnerability is increased by the onset of lymphedema, how might
the resiliency model help explain why some women with P-BrCa LE
describe their families as resilient and why others describe their fami-
lies in a state of crisis?
METHOD
The study presented here is a secondary analysis of data generated
during an earlier study (Radina & Armer, 2001). Approval for data
Radina, Armer / Surviving Breast Cancer491
collection and analysis was obtained for the original and present
study from the University of Missouri Health Sciences Institutional
Review Board. The use of secondary analysis of qualitative data is
beginning to receive increased attention by researchers. One benefit
of this method of data analysis is increasing the usefulness of their
often labor-intensive and expensive qualitative research (Thorne,
1994, 1998). At the same time, often potentially interesting and salient
data may be overlooked in the primary analysis as they are not
directly related to the focus of the study's purpose or do not make
clear contributions to the emerging findings. Secondary analysis
allows researchers to explore these other data that may have the
potential for contributing to our body of knowledge regarding the
phenomenon under study (Hinds, Vogel, & Clarke-Steffen, 1997).
The Researchers
Our interpretations of the qualitative data reported in this study
have been influenced by professional and personal experiences. The
first author is doctorally prepared in human development and family
studies. This research is one componentin an emerging career involv-
ing the exploration of the quality of life of adult cancer survivors. The
second author is doctorally prepared in nursing and is herself a breast
cancer survivor with P-BrCa LE. This intimate knowledge of the lives
of women with P-BrCa LE served to guide the primary author
through data collection, primary analysis, and secondary analysis.
Original Study Data Set
The focus of the original study (Radina & Armer, 2001) was on the
perceptionsofwomenwithP-BrCaLEwithregardtoindividual-level
andfamily-levelcopingwithlymphedema.Accordingly,lymphedema
survivors served as primary sources of data. In an effort to best cap-
ture the experiences of these women with P-BrCa LE as well as to
understand the meaning of lymphedema in their everyday lives, we
chose an ethnographic approach to data collection. In this sense, we
consider ethnography to be the researchers' participation in an unfa-
miliar sphere and the clarification and description of this unfamiliar
sphere based on the researchers' participation (Emerson, Fretz, &
Shaw, 1995). The primary author was, at the time of data collection, a
doctoral student in human development and family studies. Prior to
entering into fieldwork, she received little training regarding lymph-
492JFN, November 2004, Vol. 10 No. 4
edema beyond familiarizing herself with the limited literature avail-
able at the time regarding lymphedema and quality-of-life issues.
Thus, the primary author entered the field relatively unfamiliar with
lymphedema and naive to the potential experiences she uncovered
during her investigation. Glaser and Strauss (1967) support this
blank-slate approach to data collection and analysis.
We have also chosen to view ethnography as a synthesis of data
sources(units of analysis) tocreatea morecompleteunderstanding of
lived experiences (Emerson et al., 1995). Avariety of units of analysis
were chosen to generate a more clear and holistic understanding of
this experience. This approach allowed us to generate data that could
inform our understanding of the role context plays in living with
lymphedema (Patterson & Garwick, 1994). Units of analysis included
the use of existing qualitative data from another related study ("Self-
Management of Chronic Illness;" Armer, 1999) used to develop inter-
view questions; in-depth, semi-structured interviews with six
women with P-BrCa LE; in-depth, unstructured interviews with two
health care professionals; and observations of lymphedema support-
group meetings.
Preparation for entering the field. Prior to beginning the field-
work that generated the data set from the original study, the primary
author took steps to prepare herself. First, interviews involving
women with lymphedema conducted as part of a larger study, titled
"Self-Management ofChronicIllness"(Armer,1999), wereusedinthe
original study with the purpose of providing the primary author with
background knowledge and understanding of lymphedema experi-
ences to prepare for entrance into the participant population. These
interviews (n = 18), which were conducted by graduate nursing stu-
dents separately from the original study, broadly examined partici-
pants' perceptions of health, agency in personal health maintenance,
changes in lifestyle because of lymphedema, and issues of social sup-
port. These interviews were analyzed prior to data collection with
new participants. The primary author's impressions that evolved
from this process were incorporated into detailed field notes. Analy-
sis of these field notes indicated that the issues of coping and quality
of life stood out as salient issues for women with P-BrCa LE. Thus,
theseissues werechosen,inconcertwithinsightsgainedfromalitera-
ture review conducted regarding existing research about lymph-
edema, as the foci for the original study. Also, specific data from pre-
liminary interviews from Armer (1999) related to these issues were
Radina, Armer / Surviving Breast Cancer493
used in the development of the interview protocol for in-depth inter-
views in the original data set (Radina & Armer, 2001).
Data collection--original data set. In-depth interviews addressing
the issues of coping and quality of life were conducted with six
women with P-BrCa LE. These semistructured interviews focused
specifically on issues related to coping with lymphedema within the
context of family roles and responsibilities and family functioning.
All interviews were conducted using audiotaping, and detailed field
notes were written following each interview. Field notes included
writing detailed notes about the interview experience, as perceived
by the primary author, following each interview. The content of
these included the following: summaries of notes taken during the
interview, the primary author's thoughts about the participant's
demeanor and nonverbal impressions that could not be recorded on
audiotape, reflections on the usefulness of interview questions, and
the beginnings of analysis. In addition, the primary author listened to
audiotapedinterviewsseveraltimesfollowingtheinterviewandcon-
tinued keeping field notes of emerging impressions and thoughts on
analysis. Theuseoffield notesinthiswayis awell-supportedmethod
of qualitative data collection (Berg, 1998; Laureau, 1989; Lofland &
Lofland, 1995).
Participants of the in-depth interviews were recruited from two
sources: patients referred by surgical, medical, and radiation
oncologists, and volunteers from local lymphedema support groups.
All of the participants were older than age 18 (X = ~45 years), were
treated with surgery or radiation for breast cancer, and had
lymphedemaintheaffectedlimb.AlloftheparticipantswereofEuro-
peandescent,marriedordivorced(n=6),andhadchildrenrangingin
age from 5 to 30.
In addition to in-depth interviews with women experiencing P-
BrCa LE, unstructured interviews with two health care professionals
were also conducted. Questions developed for these interviews were
generated from the primary author's impressions generated from
analyses of the qualitative data from "Self-Management of Chronic
Illness" (Armer, 1999). The purpose of these interviews was to use the
firsthand professional knowledge these individuals had regarding
the everyday challenges and treatment of lymphedema as it relates to
the lives of women and their families. These two professionals, an
oncology nurse and a physical therapist, had a combined 30 years of
494JFN, November 2004, Vol. 10 No. 4
experience with breast cancer survivors and women living with
lymphedema. In addition, two individuals with lymphedema who
had not participated in prior interviews were invited to participate in
member checks1 to verify initial findings.
In addition to in-depth interviews, the primary author observed
four meetings of a newly forming lymphedema support group.
Detailed field notes were written following each observation. Mem-
bers of the support group included individuals with diverse
lymphedema experiences, such as primary (congenital), secondary,
lower limb, and arm lymphedemas. The majority of the support-
group participants had P-BrCa LE. On average, attendance at these
meeting was 10 persons, ranging in age from 35 to 65.
Data analysis--original data set. In the original data analysis, the
above described field notes were analyzed using an emergent strat-
egy employing both open and focused coding (Emerson et al., 1995).
The results of these analyses were found to reflect concepts and pro-
cesses described in the family adjustment and adaptation response
model (FAAR; Patterson, 1988). Although the initial results of analy-
ses (Radina & Armer, 2001) did indeed help to explain the experience
of women within family contexts who are living with P-BrCa LE,
additional questions arose that were not answered, given the lens
afforded by the FAAR. Thus, this same data set was subject to second-
ary analysis using the similar yet distinct resiliency model. Specific
aspects of this secondary analysis, which is the primary focus of this
article, are described below.
Secondary Data Analyses
The field notes generated during data collection for the original
data set (included field notes regarding support-group observations,
in-depth interviews with P-BrCa LE women, and interviews with
professionals) formed the data set subject to secondary analysis in the
study presented here. The present data analysis involved clean,
original copies of all field notes. We approached this new, secondary
analysis guided by a conceptual framework derived from the resil-
iency model (McCubbin et al., 1996). We chose this model because we
believed it was the theoretical perspective that would best help us
answer the research questions that emerged from our original analy-
ses. Field notes were subject to secondary analysis based on template
Radina, Armer / Surviving Breast Cancer495
analysis (Crabtree & Miller, 1999), which involved using an a priori
codebook developed from the concepts outlined in the resiliency
model (McCubbin et al., 1996). Template analysis served to focus
these secondary data analyses on data relevant to the research ques-
tions and to make comparisons between the resiliency model and the
experiences of the participants as they described them. In template
analysis, the researcher defines a template or set of codes a priori,
based on findings from prior research and a theoretical perspective.
Additionally, codes are defined as they emerge (Crabtree & Miller,
1999). Emergent codes were those that represented patterns of ideas
that were not anticipated and included in the a priori template based
on the resiliency model (Strauss & Corbin, 1990).
Trustworthiness. Although secondary analysis of qualitative data
indeed has its benefits, there are potential limitations with this
method, including adequately addressing qualitative standards of
trustworthiness (i.e., credibility, transferability, confirmability, and
dependability; Thorne, 1998). Criteria of trustworthiness have been
addressed in the present study to the extent possible. First, credibility
was attended to through two avenues: triangulation of data sources
and prolonged engagement by the primary author with the partici-
pantsandthedata(Lincoln&Guba,1985). Specifically,withtheuseof
multiple units of analysis of these data, we feel confident that these
findings adequately represent the experiences of the participants.
Also,becausetheprimaryauthornotonlyconductedthesesecondary
analyses but also collected the original data (in-depth interviews and
support-group observations), we feel that the interpretations she has
made of these data also provide satisfactory depictions of these expe-
riences of women with P-BrCa LE. Second, transferability has been
addressed here through providing detailed descriptions of both the
secondary analysis and theresults of that analysis. Third, these analy-
sesandresultsweresubjecttoaconfirmabilityaudit(Lincoln&Guba,
1985). Specifically, the primary author provided the second author
(Armer) with the raw data (i.e., field notes), summaries, memos, and
initial descriptions of findings. The two authors met several times
during data analyses to discuss Radina's emerging impressions of the
data and findings. Fourth, dependability is addressed earlier by
acknowledging the authors as researcher instruments whose
expertise and experiences have shaped these findings.
496JFN, November 2004, Vol. 10 No. 4
RESULTS
The findings presented offer insight into how some women
describe their own and their families' coping with P-BrCa LE. In par-
ticular, identifying the potential pileup of stressors related to
lymphedemais salient tounderstanding howsomewomen,and their
perceptionsoftheirfamilies, areresilient andwhyothersarenot.That
is, thenatureof families'perceivedvulnerabilities providesan under-
standing of the families' unique challenges and has implications for
interventions that may help women cope within the context of their
families. Also, the resiliency model is applied to the situations experi-
enced by each of the patients and their families to gain a better under-
standing of what particular factors determine women's perceptions
of family differences related to resiliency.
Increased Vulnerability
Lymphedema influences breast cancer survivors' and families'
daily lives in many ways, creating an increased vulnerability for
women in some families. The most common stressors that create this
increased vulnerability that were cited by these participants included
modification of daily household and work-related tasks, living with a
constant reminder of breast cancer, and feelings of abandonment by
medicine.
As suggested by existing literature (Armer, 2002; Armer & Whit-
man, 2002; Passik et al., 1995; Radina & Armer, 2001; Tobin et al.,
1993), the participants in the present study reported that lymphedema
canmakedaily functioningdifficult based onthebehaviorsnecessary
in attempting to prevent exacerbations, adhere to treatments, and
deal with impaired arm mobility. Because of the impact lymphedema
has on daily tasks, many participants reported the need to modify the
way these tasks are accomplished by changing the way the task itself
is done and employing the help of others. For example, Lisa,2 who
was 47 years old and 5 years postbreast cancer diagnosis, said the
following:
I used to get on all fours and clean the kitchen floor by hand. Now, I use
a sponge mop because I can't do it the way I used to. My husband vacu-
umsandcleans thebathroombecausethesearerepetitive motions.Iam
usually able to do the rest myself.
Radina, Armer / Surviving Breast Cancer497
Research currently being conducted (Radina & Armer, 2004) suggests
that these modifications may be isolating for some women because
they limit women's participation in activities with their families.
Also, such modifications may also be stressful for women who value
their independence. In addition, member checks revealed that modi-
fication was particularly relevant for those women who actively
engaged in treatment for lymphedema and who did not rely on paid
household assistance prior to the onset of lymphedema.
Living with lymphedema can also be stressful as preventing and
treating a swollen arm serves as a constant reminder of breast cancer.
The majority of participants expressed feeling anxious about the sur-
facing of emotions surrounding breast cancer when they experienced
changes in the lymphedema. Lisa said, "You can almost forget about
the breast cancer. You can forget all about it and go on with your life.
With the lymphedema there are so many things that you can't do and
that is a reminder for me." A survivor who attended a session of the
lymphedema support group expressed a similar sentiment: "It
[lymphedema] is my mortality reminder to enjoy each day."
Frustration is often an integral part of living with lymphedema
(Carter, 1997). Beyond the often frustrating task of life-style modifica-
tion and the constant reminder of breast cancer, these participants
expressed frustration in battling with physicians and other medical
professionals regarding their condition. This is not surprising
because lymphedema has historically been ignored by medical pro-
fessionals (Carter, 1997). Many of the participants expressed feeling
that their physician maintained a similar attitude regarding
lymphedema. Maggie, an oncology nurse, captured this sentiment by
quoting her physician: "I saved your life. Why are you complaining
about a little discomfort in your arm?" Many participants also
expressed feeling as though their physicians were uninformed about
lymphedemaandthereforestruggledwithdiagnosisandtreatment.
Factors Influencing Resiliency
The present findings suggest that a number of patterns related to
the resiliency of women in some families, when faced with
lymphedema, including the family's prior pattern of functioning,
family resources, and stressor appraisal. By examining these factors,
wecharacterized thefamily resiliency described bytheseparticipants
into three categories: adjustment, adaptation, and crisis. We consider
thesefamilies thatpossessedqualities associatedwithbonadjustment
498JFN, November 2004, Vol. 10 No. 4
(adjustment) and bonadaptation (adaptation) as resilient categories
of women coping with lymphedema in family contexts. Families who
were described by participants as possessing qualities associated
with maladjustment and maladaptation were collectively catego-
rized as crisis.
Families categorized as adjustment (n = 2) included those for
whom making changes related to lymphedema was not difficult. A
few minor changes were made to their daily patterns of functioning,
butoverall, theessential natureofthesepatternsremained intact(Fig-
ure 1). In particular, in these cases, participants' descriptions of their
families' appraisals of the challenges brought on by lymphedema
were positive and minimized the severity of the situation. For exam-
ple, as Sally, 58 and 4 years postbreast cancer diagnosis, explained,
"it just becomes part of the cancer experience." The participants from
these families also tended to describe having reliable support (a fam-
ily resource) from their extended families and community. It is inter-
esting that these women did not experience symptoms of lymph-
edema until several years after mastectomies and currently only
experience periodic flare-ups. This may explain why these partici-
pants perceived themselves and their families to be adjusting well to
the onset of lymphedema. Specifically, notdealing with emotionsand
challenges associated with breast cancer treatment and also dealing
with the immediate prevention and treatment of lymphedema may
reduce these families' vulnerability by providing some reduction in
the pileup of stressors these families experience.
The category of adaptation (n = 3) included women who describe
their families as having made significant changes to patterns of func-
tioning as a result of the lymphedema. In these cases, making minor
changes to daily patterns of functioning was described as not enough
to restore balance and harmony to the family. Thus, these families
appeared to be moved out of the adjustment phase (Figure 1) and into
the adaptation phase (Figure 2). Changes often include both modifi-
cation of the participant's or her husband's employment to incorpo-
rate the participant's reduced capabilities, as well as changes in the
responsibilities of individual family members. For these families, the
entire family's new patterns of functioning were described as having
revolved around the woman's lymphedema and at times her breast
cancer as well. For example, for Susan, 55 years old and 2.5 years
postbreast cancer diagnosis, her husband and her three teenage chil-
dren expressed openly to her that she was not alone in her breast can-
cer or lymphedema. To demonstrate this, they had their yearly family
Radina, Armer / Surviving Breast Cancer499
portrait taken with all five family members wearing turbans. Behav-
iors such as these appear to encourage a sense of normalcy and sense
of belonging for the participant as well as for the family. When
describing her husband's reactions to the lymphedema, Susan said
"what happens to me, happens to him." Families such as Susan's also
oftenuse humortocopewithlymphedema. This can be interpretedas
one way in which the family appraises their ability to cope with
changes in patterns of functioning. In comparison to adjustment fam-
ilies, adaptation families sometimes did not have as many basic
extended family and community resources.
Crisis (n = 1) included a woman and her family for whom
lymphedema spun them into a state of crisis. Not only was the
adjustment phase (Figure 1) insufficient to restore harmony and bal-
ance to this family but so too was the adaptation phase (Figure 2).
Rather, at the time of the woman's interview, this family appeared
stuck in a state of crisis and had already begun to deteriorate. One
explanation as to why this family was not as able to cope with
lymphedema may be that the family had already, prior to breast can-
cer and lymphedema, experienced a pileup of stressors. The woman,
Mara, had a number of other health problems prior to the onset of
breast cancer and lymphedema. Thus, when another health concern
was presented to her family, they were already vulnerable. This is evi-
denced in Mara's husband's role in her treatment. Mara, 44 and 2
years postbreast cancer diagnosis, explained the following:
I know other women [who] have the family support that I didn't
have. They have husbands who came with them to their treatments but
I didn't. They had husbands that when they were at home, helped roll
the bandages and wanted to learn how to care for the arm. My husband
didn't want anything to do with it.
Also, this family, and particularly the participant, lacked extended
family and community resources. Thus, the combination of vulnera-
bilitybecauseofapreexistingpileupofstressors,patternsoffunction-
ing that were not able to adjust or adapt to prior stressors, and lack of
reliable social support created a situation for this family in which
adjustmentandadaptationwerenotpossible.Instead,thisfamilywill
likely exist in a state of crisis until suitable improvements can be
made, particularly in terms of their patterns of functioning and social
supports. Such families may need outside interventions from health
500JFN, November 2004, Vol. 10 No. 4
care professionals or family life educators to find their way out of
crisis and into adaptation.
DISCUSSION
Asanincreasingnumberofwomenarelivingassurvivorsofbreast
cancer, they are also more likely to be living with the aftereffects of
breastcancertreatment,namelylymphedema.Thepresentstudypro-
vides insight into how these women in the context their families are
affected by and are coping with lymphedema in their daily lives.
There are a few notable limitations of this study. First, the sample
size is small, even for a qualitative study of this nature. The reason for
the sample size is that theoretical saturation was reached in the origi-
nal study, and thus, according to the study design, data collection was
terminated. Theoretical saturation involves the collection of new data
until unique information is no longer obtained through additional
interviews (Strauss & Corbin, 1990). Additional data collection was
not deemed necessary for the analyses presented here because this
theoretical saturation had been reached previously (i.e., no new infor-
mationwas anticipatedfromsubsequent interviews). Futureresearch
using this methodology and investigating these issues would do well
to have a larger sample, despite reaching theoretical saturation. A
larger number of participants would provide greater understanding
of each of the pathways of coping and shed light on possible alternate
pathways not uncovered here. Second, the source of data for this
study was women with lymphedema. The focus here was on the per-
ceptions of the family experience for women with lymphedema.
Therefore, the use of these participants in this investigation is appro-
priate. Although the perceptions of family dynamics from the
perspective of the participants were salient to the original study, no
insights from other family members about these issues were avail-
able. Thus, the findings from this study are based on only one per-
spective, calling into question whether these findings accurately
reflect the functioning of these families. Future research that
addresses such families' functioning should optimally include
multiple family members.
Using the resiliency model, we have identified unique vulnerabili-
ties within this population and three outcomes that describe ways in
which these women in the context of their families are coping with
lymphedema. Many of the vulnerabilities found in this study have
Radina, Armer / Surviving Breast Cancer501
been identified elsewhere (Carter, 1997; Radina & Armer, 2001). This
is particularly interesting considering that few studies have investi-
gated the influence of family context on individual lymphedema
experiences. Future studies should seek to move beyond the vulnera-
bilities that have been well documented to focus on how women and
their families within a particular pathway of coping specifically deal
with thosevulnerabilities (Radina & Armer, 2004). By identifying and
understanding the possible paths of coping for these families, health
care professionals and others have increased insight into what they
may do to assist families in both maintaining and achieving resil-
ience. Practitioners will be better able to serve their clientele by
becoming aware of the needs of these women in the context of their
families. For example, the woman who is perceiving her family as
experiencing difficulties making either adjustments or adaptations
and is thus in crisis may need outside interventions from knowledge-
able practitioners to find her way out of crisis and into adaptation.
Similarly, the development of appropriate interventions with women
who perceive their families as experiencing adjustment and adapta-
tion could be derived from research, such as that presented here. This
approach to understanding the lived experiences of women with
lymphedema begins to shed light on the need to serve the woman in
the context of her family life as well as to serve her family as a unit in
coping with chronic illnesses, such as lymphedema.
NOTES
1. Member checks involve the presentation of the researchers' initial findings to
individuals who either represent participants or are the participants being studied.
Theselayexperts'evaluationsofthefindingsservedtoprovide validitytotheresearch-
ers' findings (Bloor, 1983). For the data used in this analysis, member checks were con-
ducted with two women with P-BrCa LE who had not participated in in-depth inter-
views with the primary author. Their feedback involved unstructured interviews with
the primary author. These were audiotaped and the primary author's thoughts about
informationgainedfromthemembercheckswereincludedinsubsequentfieldnotes.
2. All names have been changed to protect the confidentiality of the participants.
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Radina, Armer / Surviving Breast Cancer503
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M. Elise Radina, Ph.D., C.F.L.E., is an assistant professor in the department of
Design, Family, and Consumer Sciences at the University of Northern Iowa. She
teaches in the areas of intimate relationships, research methods, family life education,
andadulthood andaging.Herresearchinterestsincludefamilies andhealth,with spe-
cific interests in breast cancer survivorship; family caregiving; and multicultural
families. Her recent publications include the following: "Utilization of Formal Sup-
port Services Among Hispanic Americans Caring for Aging Parents" in the Journal
of Gerontological Social Work (in press) and "Post-Breast Cancer Lymphedema:
Understanding Women's Knowledge of Their Condition" in Oncology Nursing
Forum (2004).
504JFN, November 2004, Vol. 10 No. 4
Jane M. Armer, Ph.D., R.N., is an associate professor in the Sinclair School of Nurs-
ing and director of Nursing Research, Ellis Fischel Cancer Center at University of
MissouriColumbia. She focuses her program of research on postbreast cancer
lymphedema and is principal investigator of a 5-year National Institutes of Health
funded study examining symptoms and limb volume changes over 30 months post
breastcancerdiagnosis.Herrecentpublications includethefollowing: "Lymphedema
Following Breast Cancer Treatment, Including Sentinel Lymph Node Biopsy" in
Lymphology (2004) and "Post-Breast Cancer Lymphedema: Understanding
Women's Knowledge of Their Condition" in Oncology Nursing Forum (2004).
Radina, Armer / Surviving Breast Cancer505
</meta-value></custom-meta></custom-meta-wrap></article-meta></front><back><notes><p>1. Member checks involve the presentation of the researchers’ initial findings to individuals who either represent participants or are the participants being studied. These lay experts’ evaluations of the findings served to provide validity to the researchers’ findings (Bloor, 1983). For the data used in this analysis, member checks were conducted with two women with P-BrCa LE who had not participated in in-depth interviews with the primary author. Their feedback involved unstructured interviews with the primary author. These were audiotaped and the primary author’s thoughts about information gained from the member checkswere included in subsequentfield notes.</p><p>2. All names have been changed to protect the confidentiality of the participants.</p></notes><ref-list><ref><citation citation-type="book" xlink:type="simple"><name name-style="western"><surname>American Cancer Society</surname></name>. 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Davis</publisher-name>.</citation></ref><ref><citation citation-type="journal" xlink:type="simple"><name name-style="western"><surname>Walsh, F.</surname></name> (<year>2002</year>). <article-title>A family resilience framework: Innovative practice applications</article-title>. <source>Family Relations</source>, <volume>51</volume>, <fpage>130</fpage>-<lpage>137</lpage>.</citation></ref><ref><citation citation-type="journal" xlink:type="simple"><name name-style="western"><surname>Walsh, F.</surname></name> (<year>2003</year>). <article-title>Family resilience: A framework for clinical practice</article-title>. <source>Family Process</source>, <volume>42</volume>(<issue>1</issue>), <fpage>1</fpage>-<lpage>18</lpage>.</citation></ref></ref-list></back></article></istex:document></istex:metadataXml><mods version="3.6"><titleInfo lang="en"><title>Surviving Breast Cancer and Living with Lymphedema: Resiliency among Women in the Context of Their Families</title></titleInfo><titleInfo type="alternative" lang="en" contentType="CDATA"><title>Surviving Breast Cancer and Living with Lymphedema: Resiliency among Women in the Context of Their Families</title></titleInfo><name type="personal"><namePart type="given">M. Elise</namePart><namePart type="family">Radina</namePart><affiliation>University of Northern Iowa</affiliation><affiliation>University of Northern Iowa</affiliation><role><roleTerm type="text">author</roleTerm></role></name><name type="personal"><namePart type="given">Jane M.</namePart><namePart type="family">Armer</namePart><affiliation>University of Missouri–Columbia</affiliation><affiliation>University of Missouri–Columbia</affiliation><role><roleTerm type="text">author</roleTerm></role></name><typeOfResource>text</typeOfResource><genre type="research-article" displayLabel="research-article"></genre><originInfo><publisher>Sage Publications</publisher><place><placeTerm type="text">Sage CA: Thousand Oaks, CA</placeTerm></place><dateIssued encoding="w3cdtf">2004-11</dateIssued><copyrightDate encoding="w3cdtf">2004</copyrightDate></originInfo><language><languageTerm type="code" authority="iso639-2b">eng</languageTerm><languageTerm type="code" authority="rfc3066">en</languageTerm></language><physicalDescription><internetMediaType>text/html</internetMediaType></physicalDescription><abstract lang="en">This study involves secondary analysis of an existing qualitative dataset (in-depth interviews with survivors [n = 6] and health professionals [n = 2], observations of a support group [n = 3], and field notes). Based on previous findings from this dataset, new questions arose regarding why only some of post–breast cancer lymphedema women who were interviewed appeared resilient within the context of their families. In the present study, we reinvestigate this dataset using the resiliency model of family stress, adjustment, and adaptation to guide our investigation via the construction of an a priori template used in analyses. Three stressors are identified that contribute to the vulnerability of these women. Resiliency in the women is characterized as adjustment, adaptation, or crisis. The present findings provide a foundation for assisting women with lymphedema and their families and underscore practitioners’ need to serve the patient and the family.</abstract><subject><genre>keywords</genre><topic>lymphedema</topic><topic>resiliency</topic><topic>family-context</topic><topic>breast cancer</topic></subject><relatedItem type="host"><titleInfo><title>Journal of Family Nursing</title></titleInfo><genre type="journal">journal</genre><identifier type="ISSN">1074-8407</identifier><identifier type="eISSN">1552-549X</identifier><identifier type="PublisherID">JFN</identifier><identifier type="PublisherID-hwp">spjfn</identifier><part><date>2004</date><detail type="volume"><caption>vol.</caption><number>10</number></detail><detail type="issue"><caption>no.</caption><number>4</number></detail><extent unit="pages"><start>485</start><end>505</end></extent></part></relatedItem><identifier type="istex">933D84BCE01147EAD2FB099982C83031D94FCC00</identifier><identifier type="DOI">10.1177/1074840704269847</identifier><identifier type="ArticleID">10.1177_1074840704269847</identifier><recordInfo><recordContentSource>SAGE</recordContentSource></recordInfo></mods></metadata><serie></serie></istex></record>Pour manipuler ce document sous Unix (Dilib)
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|texte= Surviving Breast Cancer and Living with Lymphedema: Resiliency among Women in the Context of Their Families
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