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Psychosocial and informational needs of female first-degree relatives of breast cancer patients

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Psychosocial and informational needs of female first-degree relatives of breast cancer patients
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Kluhsman, Brenda Carol
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English
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x, 90 leaves : ; 28 cm

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Cancer in women -- Family relationships ( lcsh )
Familial diseases ( lcsh )
Breast -- Diseases -- Psychological aspects ( lcsh )
Genetic counseling ( lcsh )
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bibliography ( marcgt )
theses ( marcgt )
non-fiction ( marcgt )

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Bibliography:
Includes bibliographical references (leaves 84-90).
General Note:
Department of Humanities and Social Sciences
Statement of Responsibility:
by Brenda Carol Kluhsman.

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University of Colorado Denver
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Auraria Library
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ocm43922731
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LD1190.L65 1999m .K58 ( lcc )

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Full Text
PSYCHOSOCIAL AND INFORMATIONAL NEEDS
OF FEMALE FIRST-DEGREE RELATIVES
OF BREAST CANCER PATIENTS
by
Brenda Carol Kluhsman
B.A., University of Colorado at Denver, 1991
A thesis submitted to the
University of Colorado at Denver
in partial fulfillment
of the requirements for the degree of
Master of Social Science
1999


1999 by Brenda Carol Kluhsman
All rights reserved.


This thesis for the Master of Social Science
degree by
Brenda Carol Kluhsman
has been approved
by
Kitty K. Corbett
Lori A. Crane
Lari B. Wenzel

Date


Kluhsman, Brenda Carol (M.S.S., Social Science)
Psychosocial and Informational Needs of Female First-Degree Relatives of Breast
Cancer Patients
Thesis directed by Associate Professor Kitty K. Corbett
ABSTRACT
Background: Despite evidence that family history of breast cancer increases a
womans personal risk for developing the disease, little is known about the specific
needs of women related to their experience of breast cancer in a close female relative.
This study sought to describe the important issues and related psychosocial and
informational needs of female, first-degree relatives (FDRs) of women with breast
cancer.
Methods: Qualitative and quantitative techniques were used to analyze data from an
open-ended question in a telephone interview with 1,081 women (age 40+ years),
having a mother, sister, or daughter diagnosed with breast cancer in the past year.
Important issues for FDRs were described, and associations between FDRs
characteristics and their specific psychosocial and informational needs were
evaluated.
Results: More than half of FDRs reported informational or emotional support needs
related to their affected relatives breast cancer. Daughters of women with breast
cancer expressed the greatest need for information, while mothers reported the most
need for emotional support. Key informational needs identified include: medical
information regarding the patients diagnosis and treatment; more access to and
communication with the patients medical team; information about personal risk,
breast cancer prevention and screening information; health promotion tips; print and
IV


video materials; and programs to obtain cancer information. Specific emotional
support needs include: support groups; having other women to talk with who also
have a close relative with breast cancer; and emotional support for FDRs to better
help the affected relative. Age was negatively associated with expressed need for
information. Education was positively associated with reported need for information
and need for emotional support. Income was positively associated with expressed
need for information.
Conclusion: Female, first-degree relatives of women with breast cancer report a
wide range of informational and emotional support needs. Health care providers
should address the concerns among these women at higher risk for breast cancer to
strengthen family support for the breast cancer patient and promote screening of her
female relatives. Counseling interventions which address FDRs psychosocial and
informational needs are recommended.
Key Words: Breast Cancer, Psychosocial, Information, Support
This abstract accurately represents the content of the candidates thesis. I recommend
its publication.
Signed
v


ACKNOWLEDGEMENT
My sincere thanks to Alfred C. Marcus, Ph.D., Dennis Ahnen, M.D., Diane
Fairclough, Dr. P.H., and the staff of the Cancer Prevention Research Unit at
AMC Cancer Research Center for their dedicated effort in conducting the original
research upon which this manuscript is based; to Lucinda Bryant, Kathy Plomer
and Alanna Kulchak Rahm for their coding expertise; to Jana Everett, my
academic advisor for her guidance and support; and to Kitty Corbett, Ph.D., Lori
Crane, Ph.D., and Lari Wenzel, Ph.D. for their gracious mentorship.


CONTENTS
Figures................................................... ix
Tables.................................................... x
CHAPTER
1. PROBLEM STATEMENT...............................................1
2. THEORETICAL LITERATURE..........................................3
Personal Meaning of Illness.................................4
The Family Social Network and Illness.......................6
The Family Social Network and Cancer........................9
Informational Needs of Cancer Patients and
Their Families....................................10
Social Support Needs of Cancer Patients and
Their Families....................................11
The Family Social Network and Breast Cancer................13
Studies of First-Degree Relatives of Breast Cancer
Patients..........................................15
3. METHODS........................................................20
Study Design...............................................2Q
Study Setting..............................................20
Subjects...................................................21
Enrollment Procedures......................................22
Data Collection............................................22
vii


Data Analysis.................................................23
Coding Procedures....................................24
Qualitative Analysis Using NUD*IST...................28
Quantitative Analysis Using SPSS....................29
4. RESULTS..........................................................31
Characteristics of the Sample.................................31
Results of Qualitative Analysis: Themes in Womens Responses..33
No Needs.............................................34
Informational Needs..................................35
Emotional Support Needs..............................39
Results of Quantitative Analysis..............................41
Distribution of Overall Needs........................41
Distribution of Needs by Key Demographic Variables...42
Distribution of Needs by Relationship to Patient.....44
5. DISCUSSION.......................................................45
Strengths of the Study........................................49
Limitations of the Study......................................50
6. IMPLICATIONS.....................................................53
APPENDIX
TELEPHONE INTERVIEW INSTRUMENT...................................56
BIBLIOGRAPHY...........................................................84
viii


FIGURES
Figure
3.1 Editing Analysis Style............................................25
3.2 Example of Data Coding............................................26
IX


TABLES
Table
2.1 Studies Reporting Psychosocial Sequelae in First-Degree Relatives of
Women with Breast Cancer...............................................16
3.1 Final Data Coding Scheme................................................28
4.1 Sample Characteristics................................................ 32
4.2 Categories of Specific Needs Expressed by FDRs..........................33
4.3 Overall Distribution of Needs Expressed by FDRs.........................41
4.4 Major Categories of Needs Expressed by FDRs.............................41
4.5 Distribution of Needs by Key Demographic Variables......................43
x


CHAPTER 1
PROBLEM STATEMENT
This research examines the psychosocial and informational needs of the
mothers, sisters, and daughters of women diagnosed with breast cancer. Results of a
descriptive data analysis using both qualitative and quantitative methods are
presented.
The most important risk factor for breast cancer is a positive family history in
at least one, first-degree relative (FDR) (Esplen, Toner, Hunter, Glendon, Butler, &
Field, 1998). The relative risk of developing breast cancer increases by two- to three-
fold if one family member has breast cancer, and can increase by five-fold if the breast
cancer is bilateral. The lifetime risk of developing breast cancer can be as high as 50%
among women with two family members with premenopausal breast cancer (American
Breast Cancer Foundation, 1998). A recent surge has occurred in medical and
scientific evidence of family history as a risk factor for breast cancer. This increase in
knowledge is due, in part, to advances in molecular research and the discovery of the
breast-ovarian susceptibility genes, BRCA1 and BRCA2.
There is a paucity of literature related to the specific psychosocial concerns
and needs of close relatives of cancer patients. This kind of research is especially
salient in cases, such as breast cancer, where the diagnosis may indicate increased
1


heritable risk. To date, investigation of the psychosocial impact on women with a
family history of breast cancer has been limited to a few studies, primarily of women
in BRCA1 and BRCA2 families, and remains largely uncharted territory.
Understanding the psychosocial impact of breast cancer on close female relatives has
potential for cost-effective interventions, which promote cancer screening behaviors
and thereby save lives, reduce suffering, and lessen financial strain on the health care
system.
To examine the psychosocial concerns of female, first-degree relatives of
women with breast cancer, an ancillary data analysis using both quantitative and
qualitative methods was conducted. Specifically, the goal of this analysis is to
evaluate how women characterize their own psychosocial and informational needs
related to having a sister, mother, or daughter diagnosed with breast cancer in the
past year. This paper presents a theoretical framework related to the personal,
subjective experience of illness as evidenced in illness narratives, explanatory model
paradigms, and the family social network, to better understand the impact of breast
cancer diagnosed in a female family member. Results of the analysis includes
examples of womens self-described, personal experiences and concerns, as stated in
their narrative responses. Recommendations will be made for health care practice,
and implications for future research will be discussed.
2


CHAPTER 2
THEORETICAL LITERATURE
The current era, one that might be called the psychologizing of medicine,
began with a growing realization of the limitations of the biological approach to
understanding the most prevalent sources of morbidity and mortality (Ahmed, Kolker,
& Coehlo, 1979). The biomedical view of disease, which mainly focuses on the
biological aspects of disease and bodily dysfunction, has given way to a more
complex model, the biopsychosocial model of health. This model, advanced by
George Engel (1977, 1980), is based on a complete view of health and illness that
takes into account not only the biology of the person, but also the person's psychology
and sociology. The model hypothesizes that in order to understand a person's state of
illness and how to treat it, one must consider how psychological, sociological,
behavioral, and cultural factors play a role along with biological factors in all facets
of illness and illness behavior (Bloom, 1988). It is, in fact, now widely accepted
throughout the medical and lay communities that social, psychological, and
physiological processes modulate one another in health and illness (Engle, 1980).
3


Personal Meaning of Illness
The concepts of disease and illness have long been used interchangeably
by lay persons and health professionals alike. Yet, the concepts of disease and illness
can be clearly seen as two distinct paradigms when viewed through the lens of a
physician trained in the Western biomedical model, compared to that of a medical
anthropologist or social scientist. Disease is conceptualized in the narrow,
biological terms of the biomedical model as an alteration in biological structure or
functioning (Kleinman, 1988). Disease is diagnosed and labeled by physicians and
mentioned in scientific terms in medical texts. Disease refers to the culture of
biomedicine; its meaning assessed by members of the health care team (Brown &
Corbett, 1995). Thus, disease is what practitioners have been trained to "see" through
the theoretical lens of their particular form of practice. Treatment intended solely to
improve disease processes, however, may be contrary to, and confound, the patient's
and family's assessments of care.
"Illness," on the other hand, refers to the innately human experience of
symptoms and suffering, viewed and understood in common-sense ways by persons
within a social group. The experience of illness is culturally shaped, influenced by
the patterned ways in which persons learn to think, act, and mirror the social structure
of their life worlds. Viewed from this perspective, there are socially acceptable and
4


unacceptable ways of being ill. Illness behavior is based on the patient's or family
members'judgments of how best to cope with the distress and practical problems in
daily living caused by the health threat. Thus, illness is the lived experience of
patients and their families as they encounter life-threatening or serious health threats,
from their personal and subjective point of view.
Within qualitative medical research there has been a recent surge in narrative
accounts of illness and in methods of narrative and thematic analysis (e.g., Good,
Munakata, Kobayashi, Mattingly, & Good, 1994; Hyden, 1997; Steffen, 1997).
Illness narratives emerge from the patient's and family's interpretations of the
different meanings of illness within personal, social and cultural contexts. The illness
narrative is a story the patient tells, and significant others retell, to give coherence to
the events and long-term course of suffering. These model texts shape and even
create experience (Kleinman, 1988), and provide an understanding of the experience
of illness through the rich descriptions they impart and the wealth of detail that
emerges. Illness narratives reveal peoples explanatory models, or constellations of
beliefs and behaviors that guide individuals' responses when faced with serious or
life-threatening illness. These internalized models help people make sense of and
guide their actions. Explanatory models, comprised of information, biases,
assumptions, and explanations learned and reinforced by the social and cultural
5


influences over one's lifetime (Brown & Corbett, 1995), are notions that patients,
families, and practitioners have about a specific illness episode. Meaning is created
in the context of serious illness in the same way that it is created in other personal and
cultural dilemmas, as contingent on the availability and quality of social relationships
and tangible resources. Meaning ascribed to illness can thereby result in different
outcomes. For example, one person may experience illness as something negative and
self-defeating, while another may discover in the illness experience the opportunity
for growth and a deeper appreciation of life.
The family social network is the foundation from which most individuals
belief systems and values originate, develop, and change over time. To better
understand personal meaning of illness requires consideration of how the family
social network contributes to the individuals explanatory model of the illness
experience.
The Family Social Network and Illness
Social scientists throughout the twentieth century have used social network
analyses to understand how the complexities of social ties and networks affect health
and health care (Hall & Wellman, 1985). The social network analytic model, for
example, focuses on the characteristics of the patterns of ties between actors in a
6


social system, rather than on characteristics of the individuals themselves. Robinson
(1995) has noted, however, that initial definitions in Western nursing practice about
the individual and family have been framed in terms of the individual (with or
without family as context), rather than in terms of the family network as client or unit
of care. These definitions have proven to be limiting, since they fail to depict the
intricate relationships and exchanges between individuals and their families. More
recent investigations have focused on the importance of seeing the family as a system,
in which the person is viewed as both an individual and a family member, rather than
the individual as independent of the family (Stetz, 1998, p.157). From this
perspective, the family is considered a special type of social network, in which the
close interpersonal relationships among its members may be affected profoundly
when confronted by a serious or life-threatening illness in one of its members.
A growing interest in the role of the family in health care has occurred largely
because of two increasing realizations: 1) the importance of the family in medical
management, and 2) the use of family-based alternatives as the site for provision of
medical care, particularly in the area of chronic illness (Bloom, 1988). As the family
has become increasingly involved in every aspect of medical care (prevention,
treatment, management and rehabilitation), an increasing degree of collaboration
between medical care and family systems has become necessary (Doherty, 1985;
7


Molumphy & Sporakowski, 1984; Stetz, Lewis, & Primomo, 1986). There is no
question that the severe illness of a family member constitutes a stressful life event
for the patient, and usually for family members as well, particularly if there is little
likelihood for a full recovery. Doherty and McCubbin (1985) have identified six
ways in which the family plays a role in the health of its members:
1. Family-related stressful life events and factors which precipitate illness
2. Health promotion and risk reduction
3. Family-based health and illness appraisals
4. Family response to acute illness
5. Family role in help seeking
6. Family adaptation to illness.
A possible link between social relationships and health has been proposed by
Thoits (1982): that role relationships provide a set of identities, a source of positive
self-evaluation, and the basis for a sense of control and mastery. Within the family
network, individuals enact roles and carry out responsibilities. These roles, which are
learned and shaped by many social forces, give meaning and purpose to one's life and
foster a sense of belonging and contribution. Health is enhanced through family role
involvement, hence reducing the likelihood that profound anxiety and despair will be
experienced. This hypothesis suggests that within the family social network, role
relationships and social support may be key factors in the family's adaptation to
serious or life-threatening illness.
8


The Family Social Network and Cancer
Confronting a cancer diagnosis requires facing an abrupt, unfamiliar, and
frightening situation. A significant body of research over the past decade (primarily
from the nursing literature) demonstrates the needs of family caregivers and factors
that contribute to adverse outcomes for relatives of cancer patients (Yates, 1999;
Twigg & Atkin, 1994; Swanson, Jensen, Specht, Johnson, Maas, & Saylor, 1997).
Most commonly, the reported concerns and needs of household family caregivers
relate to information about the disease and treatment, maintenance of household
functioning, psychological and spiritual support, access to legal or financial advice,
and availability of respite care (Mor, Allen, Siegel, & Houts, 1992; Braithwaite, 1992;
Kristjanson & Ashcroft, 1994; Laizner, Yost, Berg, & McCorkle, 1993; Sales,
Schultz, & Biegel, 1992). The family caregiver's cancer experience has often been
described as burdensome and stressful, due to its pervasive impact on multiple
dimensions of the family member's life. Such burden or strain is seen to arise from
numerous sources, including direct care and physical strain, managing uncertainty,
worry, tension, and emotional adjustment, role conflict, economic burden, work
adjustments, and sleep disturbances (Yates, 1999; Steel & Fitch, 1996; Longman,
Atwood, Sherman, Benedict, & Shang, 1992).
9


Two general types of moderating factors underlie the process of adaptation to
cancer as a stressful life event: personal resources and social resources (Bloom,
1988). Personal resources used to cope with the stresses of illness include:
information seeking, direct action, inhibition of action, intrapsychic processes (denial,
avoidance, rationalization), and turning to others (seeking support). Social resources
used to cope with illness include family members, friends, coworkers, and others who
lend emotional, psychological, moral, and spiritual support to the seriously ill person
and his/her relatives. Information and social support, in particular, can serve as
buffers which mitigate the stress and other negative effects of cancer for persons with
cancer and their relatives.
Informational Needs of Cancer Patients and Their Families
There is evidence from the literature that cancer patients and their families
need concrete information and practical advice to understand events across the cancer
trajectory and adjust to the cancer diagnosis and its treatment. Studies which have
investigated the most important domains of information, as judged by patients and
their relatives, reveal that basic knowledge about cancer disease and its treatment are
frequently reported areas of specific interest (Love, Wolter, & Hoopes, 1985; Brandt,
1991; Carlsson & Strang, 1997; Carlsson, Strang, & Nygren, 1999). Key issues
10


include: information about the diagnosis and its implications; the treatment plan,
goals, and possible treatment side-effects (short-term and long-term); self-care; and
heredity related to cancer. Information seeking, recognized as a significant coping
strategy in adjustment to cancer in a family member (e.g., Weisman & Sobel, 1979;
Worden & Weisman, 1984), provides individuals with a tool with buffering effects to
better cope with a potentially life-threatening situation. Tringali (1986) reported that
information needs are more important to family members of cancer patients than are
psychological needs. A recent review of the literature on information, education, and
communication needs of cancer patients and their families demonstrates that
information should be tailored to meet patients' and their relatives' educational
background, cultural orientation, and general level of comprehension, and as the
informational needs of patients and family members change throughout the course of
care, these needs should be reassessed periodically (Harris, 1998).
Social Support Needs of Cancer Patients and Their Families
Although the exact nature and means of measuring the concept of social
support are still debated, the literature has given considerable attention to social
support and its role as a buffer to stressful life events, such as cancer. For example,
Cobb (1976) perceived social support to be a function of one or more of the following
11


three classes of information: 1) information leading a person to believe (s)he is cared
for and loved; 2) information leading a person to believe (s)he is esteemed and
valued; and 3) information leading a person to believe (s)he belongs to a network of
communication and mutual belonging. Weisman and Worden (1976-77)
demonstrated that strong interpersonal support facilitated successful coping behaviors
of newly diagnosed cancer patients, and was therefore regarded as a psychosocial
asset. Murawski, Penman & Schmitt (1978) referred to social support as a situation
in which there exist strong interpersonal ties to people, upon whom one can depend
for emotional support, help, and reassurance in times of need. Northouse (1988)
demonstrated that breast cancer patients and their husbands who reported higher
levels of social support reported fewer adjustment difficulties post-surgery. These
findings have implications for clinical practice: for instance, practitioners might better
be able identify and address distress related to the diagnosis of breast cancer in a
female family member, and assist both the patient and her relatives in accessing
resources that meet their support needs.
12


The Family Social Network and Breast Cancer
The diagnosis of breast cancer in a female family member can impact both the
patient and her family in many ways. The psychological impact of breast cancer has
been shown to vary among diagnosed women, depending on the affected womans
age, personality, life experience, social and familial relationships, psychological and
psychiatric history, stage of disease, and treatments given (Daune, 1995; Marcus,
Garrett, Celia, Wenzel, Brady, Crane, McClatchey, Kluhsman, & Pate-Willig, 1998;
Wenzel, Fairclough, Brady, Celia, Garrett, Kluhsman, & Marcus, in press).
Similarly, the female, FDRs identity and sense of self, as biologically, socially,
and/or spiritually connected with her diagnosed sister, mother, or daughter may be
central to her own subjective experience and responses to the illness, including her
subsequent health behaviors.
It is established in the literature that a family members adaptation to breast
cancer may be characterized by six conceptual themes that characterize all phases of
the illness (Lewis, Ellison, & Woods, 1985): powerlessness, ambivalence,
interdependence, uncertainty, role restructuring, and resiliency. Powerlessness, or
sense of lack of control, is a dominant theme during the initial diagnosis and
treatment period. Family members report that they often feel powerless to affect the
course of symptoms and suffering. This feeling of powerlessness is accentuated when
13


family members perceive a lack of effective communication with the physician, or are
unable to participate in the treatment plan. Ambivalence towards the patient,
including feelings of blame, guilt, and shame, has been shown to be a manifestation
of coping with a family members chronic illness (e.g., Malick, 1979). These
responses are often reactions to disruptions in family routines and threats to
established relationships, as members of an interdependent system. Feelings of
ambivalence often arise after the crises of the diagnostic and treatment periods have
passed, and may lead to tension and blame in family members. A breast cancer
diagnosis creates extraordinary interdependence for the patient and her family
members, including providing physical and emotional support to the patient, taking
care of the patients children, and household tasks. The demands imposed on family
members in trying to meet the patients needs while maintaining a balance in their
own lives can result in exhaustion and tension in the familys interpersonal
relationships (or may positively affect relationships and strengthen cooperation).
Family members also must cope with uncertainty across the entire cancer trajectory:
during the diagnostic, treatment, and post-treatment periods, there is uncertainty about
the extensiveness and aggressiveness of the disease, the outcome of treatment, and
whether the cancer has metastasized and will recur at any given time. Potential
heritable risk presents for these close relatives the added uncertainty of not knowing
14


whether they carry a predisposition, such as a gene mutation, for developing breast
cancer. As a chronic illness, breast cancer in a family member can result in role
restructuring for other family members as they assume responsibilities and functions
of the ill person. Tension and conflict can result as roles are realigned and
adjustments are made in the family structure. Finally, resiliency, or the ability to
transcend the psychological and emotional stress resulting from a breast cancer
diagnosis in a close relative, is an important factor in coping and adjustment for
female family members.
Studies of First-Degree Relatives of Breast Cancer Patients
Investigations of specific psychosocial sequelae among female FDRs of breast
cancer patients have only recently begun. This research, summarized in Table 2.1,
reveals that FDRs of breast cancer patients experience general psychological and
cancer-specific distress, worry about their affected relative, vulnerability related to
their personal risk of developing breast cancer, anxiety, and avoidance of breast
cancer-related thoughts. Several of these studies show that varying levels of
psychological distress impact personal risk perception and subsequent screening
behaviors (either positively or negatively) among FDRs of women with breast cancer
(Stefanek & Wilcox, 1991; Lerman, Daly, Sands, Balshem, Lustbader, Heggan,
Goldstein, James, & Engstrom, 1993; McCaul, Schroeder, & Reid, 1996).
15


TABLE 2.1: Studies Reporting Psychosocial Sequelae in First-Degree Relatives of Women with Breast Cancer
* .Study ; Z'* V Sample Method < ,, Results ;*
Stefanek & Wilcox, 1991 FDRs of index cases, age 35+ (n=125) Telephone Interview Worry about developing breast cancer positively related to mammography use and BSE competence Poor compliance in BSE and utilization of mammography
Kash et al., 1992 FDRs of index cases, mean age 44 (n=217) Structured Questionnaire Psychological distress consistent with need for counseling High anxiety negatively related to CBE and monthly BSE
Lerman, Daly & Sands, 1993 FDRs of index cases, age 35-79 (n=140) Telephone Interview Breast cancer-related intrusive thoughts and worries negatively associated with mammography adherence
Hughes et al, 1996 FDRs of index cases, age 35+ (n=336) Telephone Interview Concerns about personal risk of breast cancer Worries about affected relative Avoidance of breast cancer- related thoughts and feelings
Lloyd et al, 1996 Breast cancer genetic counselees (FDRs) and controls (n=124) (U.K. study) Face-to-Face Interview Breast cancer-specific distress despite clinic attendance Inaccurate perception of breast cancer risk Increased risk not predictive of psychological morbidity
McCaul et al, 1996 Women with/without a family history of breast cancer (n>20,000) (Meta-analysis of >50 studies) Various Methods Women with family history of breast
cancer: Were more likely to have been screened (18/19 studies) Greater worry positively related to screening
Audrain et al, 1998 FDRs of index cases (breast and/or ovarian cancer), age 18+ (n=256) Structured Telephone Interview Moderate, general distress Heightened breast cancer risk perceptions, Low perceptions of control over getting breast cancer
Gilbar, 1998 Women with/ without a family history of breast cancer (n=235) (Israel study) Structured Questionnaire Women with family history of breast cancer had: More symptoms of psychological distress
16


TABLE 2.1 (Cont.)
Gilbar & Borovik, 1998 Daughters.of women who had had breast cancer (n=45); Women with no family history of breast cancer (n=51) (Israel study) Structured Questionnaire Daughters of women with breast cancer: Ranked lower on sense of coherence Were more actively involved in the medical setting Requested more medical information
McCaul et al., 1998 Women with family history of breast cancer (n=65); Women without a family history of breast cancer (n=70) Structured Questionnaire Women with family history of breast cancer had: Greater worry and feelings of personal vulnerability over time Worry about breast cancer modestly and positively related to frequency of screening behaviors
Schwartz et al., 1998 FDRs of index cases (n=341) Telephone & Face-to-Face Interviews General distress Cancer-specific distress Intrusive thoughts and avoidance behaviors
Zakowski et al., 1998 Women with/ without a family history of breast cancer (n=89) Telephone Interview Women with family history of breast cancer had: Higher levels of intrusive thoughts, avoidance, and perceived lifetime risk for breast cancer
Another study by Kash, Holland, Halper, & Miller (1992) found that more
than 27% of FDRs had a level of psychological distress consistent with the need for
counseling. Women who had more psychological distress reported more barriers to
screening, fewer social supports, and low social desirability. In addition, higher
anxiety was directly related to poor attendance at a clinical breast examination and
poor adherence to monthly breast self-examination.
17


Cultural factors have also been shown as factors related to the psychosocial
impact on FDRs of breast cancer in a close female relative. Hughes, Lerman and
Lustbader (1996) found cultural differences to affect women's perceptions about
breast cancer and screening for the disease. In comparison with white women,
African American women had significantly greater concerns about their personal risk
of breast cancer, more worries about their affected relative, and scored significantly
higher on a measure of avoidance of breast cancer-related thoughts and feelings.
Research on psychosocial sequelae specific to the FDRs relationship to the
family member diagnosed with breast cancer is particularly scarce. One recent
investigation by Gilbar and Borovik (1998) found that daughters of women with
breast cancer had a lower sense of coherence, were more actively involved in the
medical setting, and requested more medical information than women whose mothers
did not have breast cancer. It is important to note that these results were based on a
small sample size of 45 FDRs, compared with 51 women without a family history of
breast cancer, which limits generalizability of results.
The theoretical background above provides insight for understanding the
personal meaningfulness and psychosocial impact of having a mother, sister, or
daughter diagnosed with breast cancer. Against this backdrop, the small but growing
body of research specific to FDRs of women with breast cancer underscores the
18


importance of further examining their psychosocial and informational needs. The
current study seeks to advance this body of knowledge. In addressing FDRs
psychosocial and informational needs, women may be empowered with the
knowledge and resources to provide greater support for their close female relative
with breast cancer, and also to optimize their own health status through vigilant,
timely breast cancer screening behaviors, and related health promotion practices.
19


CHAPTER 3
METHODS
Study Design
A descriptive, cross-sectional data analysis was conducted to examine the
psychosocial and informational needs reported by the female FDRs of women
diagnosed with breast cancer in the past year. The data represent subjects responses
to the single, open-ended question within a structured, baseline telephone interview,
prior to randomization of subjects. The analysis utilizes both qualitative and
quantitative analytic techniques.
Study Setting
The data were collected from May 1997- February 1999, as part of two large,
nationwide, randomized trials, which tested a comparable telephone-based counseling
intervention to promote cancer screening among the FDRs of breast and colorectal
cancer patients (Marcus, Ahnen, Cutter, Calonge, Russell, Sedlacek, Wood,
Manchester, Fox, McCaskill-Stevens, Fairclough, Hines, Wenzel, & Osborn, 1999).
In these studies, families (rather than individuals), including the diagnosed family
member and her age-eligible, female FDRs, were randomized to either receive a
telephone counseling intervention, or to the control arm (no intervention). In the
20


breast cancer families study, index cases who had been diagnosed with breast cancer
in the past year were identified through hospital tumor registries or clinic lists in over
15 major medical institutions throughout the United States. In an interview with
professional interviewers of the Computer-Assisted Telephone Interviewing (CATI)
Unit at the AMC Cancer Research Center in Denver, CO, participating index cases
gave permission to contact their female FDRs (age 40+ years). The data analyzed in
the current, ancillary study were subsequently collected in a baseline telephone
interview with these female FDRs.
Subjects
FDRs meeting the following eligibility criteria were enrolled into the original,
randomized breast cancer families study:
females, 40+ years of age, having a mother, sister, or daughter diagnosed
with breast cancer in the past year
the index case gave permission for the researchers to contact the FDR
the FDR was already aware that the index case had been diagnosed with
breast cancer
the FDR gave verbal and/or written consent to participate
the FDR is a resident of the United States
the FDR speaks English.
21


Enrollment Procedures
A letter of invitation, study brochure, and Participation Form, on which
respondents could indicate willingness to participate or decline the study, were mailed
to identified index cases. In a telephone interview with the index case, a family
history of cancer, defined as the total number of the index cases first- and second-
degree relatives with any type of cancer, was obtained. A pre-programmed algorithm
in the computerized interview calculated eligibility of the index case, in relation to
family cancer history. As determined by the algorithm, index cases having
exceptionally strong family cancer histories were excluded from the study to prevent
any related bias in the FDR cohort. These index cases received a referral to a
specialized, hereditary cancer clinic. Eligible index cases provided consent to contact
their female FDRs, as well as a list of the FDRs and their contact information. An
invitation packet similar to that received by the index case was subsequently mailed
to FDRs. All Institutional Review Boards of participating institutions approved
combined verbal consent and written Participation Form as constituting adequate
informed consent.
Data Collection
The data for the current analysis represent aggregate responses to a single,
open-ended question within an otherwise structured, baseline interview instrument
22


(Appendix, p. 81). The open-ended question was stated as follows:
Id like to ask you to share any ideas you might have about what kinds of
support, information, or programs would be useful for close relatives of
breast cancer patients. For instance, is there anything that people in health
care or health education could have offered you that would have been
helpful?
This question was selected to elicit womens perceived psychosocial and
informational needs related to the diagnosis of breast cancer in their mother, sister, or
daughter. The entire interview was conducted by telephone, audiotaped, and took 30
minutes on average to complete. Interviewers entered the FDRs verbatim or
paraphrased response into the computer database program.
Data Analysis
The data set of responses to the open-ended question was transferred from the
original randomized study database to a Microsoft Word for Windows 95 file.
Each record in this file contained the subjects study number, interview date and start
time, interviewer name, subjects relation to the index case, and response to the open-
ended question. This file was exported to a qualitative data analysis software
program and merged with selected demographic and key quantitative variables for
analysis. Following completion of qualitative analysis, quantitative analysis was
conducted.
23


Coding Procedures
A multiphase process was used to analyze the transcribed data, based on the
content analytic methods described by Krippendorf (1980), Strauss and Corbin
(1990), and Markoff, Shapiro & Weitman (1974). Ms. Kluhsman first listened to ten
audiotaped interviews in their entirety to understand the full contextual framework of
the open-ended question. Transcripts of the responses to the open-ended question
were then read multiple times. Most responses were brief, and many contained
multiple concepts. The unit of analysis was determined as the individual FDRs
response to the question, operationally handled in the written paragraph. The editing
analysis style (Crabtree & Miller, 1992) was used to group data into inductively
derived categories, then to develop a coding scheme for the data set. As shown in
Figure 3.1 below, the editing analysis style involves making observations during a
systematic reading of the text and organizing these observations into categories or
codes, which are then re-read for further interpretation.
24


FIGURE 3.1: Editing Analysis Style*
Interpreter (Editor)
During the multiple readings of the printed data set, predominant psychosocial
and informational needs reported by FDRs were highlighted, or flagged. Eighteen
separate, thematic categories, based on the underlying, implicit meaning in the
content of the text, emerged from these "flagged" data (Iteration 1). Similar or related
responses were then grouped into general themes or content areas (Iteration 2). These
categorical constructs were refined and operationalized, from which an initial coding
scheme was developed (Iteration 3). The initial coding scheme included five
categories of informational items, one category of physician communication issues,
and two categories of support (for FDR and patient). Dr. Lucinda Bryant provided
independent expert review of the data set. Blinded to the initial coding scheme, Dr.
25


Bryant conducted content analysis of the data set. In consultation with Dr. Corbett,
comparisons of Dr. Bryant's review and observations confirmed content validity of
the initial coding scheme and the appropriateness of using the prescribed coding
techniques. Dr. Alfred Marcus, Principal Investigator of the original, randomized
study, reviewed each iteration in the development of the coding scheme.
Two Masters-level health researchers assisted Ms. Kluhsman in coding the
data. Compound and multiple sentences were analyzed into their component parts
and coded as multiple units. All units of analysis were coded; no unit was discarded.
Thus, each subjects response paragraph could contain multiple coded concepts, as
shown in the example in Figure 3.2. (Variable names related to thematic categories
are shown in bold type in the given example, whereas number codes representing
these variables were actually used by the coding team in coding the narrative
responses.)
______________________________FIGURE 3.2: Example of Data Coding_________________________________
I dont know. My mother is still in ahaze. The support group made her more depressed. Maybe
[EMOTPAT]*
some one-on-one would be better in some cases. The doctors could have been more informative before
[MEDFDR]**
the surgery. More information for the family would have helped. No one confronted us with what was
going on, especially since she was "in and out in 24 hours after the surgery. We didnt know what to do.
[EMOTOTHR]***
We need for families to know how to help the patient, regardless of the patients age._______
Emotional Support for Patient Medical Information for Patient Emotional Support for FDR to Help Patient
26


The data coding team met four times to review and compare their independent
coding of a sample of responses. Disagreements about any aspects of the coding were
resolved through discussions. Recoding decisions were made by consensus (when all
three coders agreed), majority vote (when two coders disagreed), or Ms. Kluhsman
(when all three coders disagreed, without subsequent agreement between at least two
coders). This process resulted in new decision rules about the inclusion or exclusion
of a unit in a category, refined definitions of existing thematic categories, and the
identification and definition of two new categories (Mammography Financial
Assistance; Emotional/Other Support to Help Patient) (Iteration 4). Intercoder
reliability was calculated at each of the four coding review sessions using Crabtree
and Millers (1992) formula. Reliability was initially 53% and 62% for the first two
rating periods, and rose to 92% and 98%, respectively, for the second two rating
periods following discussions and consensus decisions. In permitting continuous
refinement of the coding scheme, the content analysis editing style thus greatly
enhanced intercoder reliability. The final coding scheme, as shown in Table 3.1, was
used to code and to recode data prior to further analysis.
27


TABLE 3.1: Final Data Coding Scheme
Major Code : SubrCode Descriptipn -'
Health Promotion Prevention; Screening; Self-Care; Alternative Therapies
Programs/Classes Programs; Classes; Seminars
Print Material Literature, Brochures, Pamphlets, Books, etc.
INFORMATION Video/ Multimedia Video; TV; Newspaper; Magazines; Computer/ Internet
Risk Information Statistics; Genetic Counseling/ Testing; "Causative Agents
Medical Information (for Patient) Cancer-Related Medical Information
Medical Information (for FDR) General or Cancer-Specific Medical Information
MD Accessibility, Communication, Sensitivity MD/ health team informs, listens, and/or sensitive to FDR
Emotional Support (for Patient) Peer Support (talk w/other survivors); Support Group; Professional Support; Family/Friends; Community; Church
SUPPORT Emotional Support (for FDR) Peer Support (talk w/other FDRs); Support Group; Professional Support; Family/Friends; Community; Church
Emotional Support (for FDR to help Patient) Information, Support, Advice, for FDR to Help Patient
Mammography Financial Assistance Free/ Low-Cost Mammography
OTHER Other Need Needs Not Fitting Other Categories; Ambiguous Responses
NO NEEDS No Needs Expressed Had Sufficient Resources; Did Not Feel Need
Qualitative Analysis Using NUD*IST
After hard copy coding was completed, qualitative analysis was conducted
using the Qualitative Solutions and Research Non-Numerical Unstructured Data
Indexing Searching and Theorizing (QSR NUD*IST) Revision 4 software program.
The QSR NUD*IST program is used by social science and health researchers in over
28


forty countries (Richards, 1997). The program allows data coding processes in an
index system and searching text or patterns of coding. The same categories as used
for the hard copy coding were entered into the QSR NUD*IST index system. Again
using the paragraph of the individual FDRs response to the question as the unit of
analysis, text searches of words and phrases were conducted to capture other themes
which might have been overlooked in the data coding scheme already developed. No
new categories emerged. The NUD*IST data file was utilized for text searches,
organization, and generating an editable version to extract blocks of text into the
discussion of qualitative analysis results.
Quantitative Analysis Using SPSS
The coded responses to the open-ended question were entered into SPSS for
Windows Release 7.0 for quantitative analysis, along with selected demographic
and key variables (Relation of FDR to Patient, Time Since Learning of Diagnosis of
Patient), imported from the full, baseline interview data set. The use of SPSS allowed
the generation of distributions, descriptive statistics, tabulated reports, and hypothesis
testing. Preliminary analyses were conducted on all finely defined categories of
needs (e.g., Health Promotion), as listed in Table 3.1. These categories were then
collapsed into three major categories for final analysis: Information, Support, and
29


Other. Among those FDRs who did not respond, Dont Know, subjects where
classified as reporting Any Need or No Needs. Frequency distributions were run to
determine subject characteristics, out-of-range values, and data entry errors.
Associations between demographic characteristics and reporting needs were tested
using a chi-square test of independence for unordered variables (e.g., Race, Relation
of FDR to Patient), and tested using the Mantel-Haenszel chi-square test for ordered
variables (e.g., Education, Income). Dr. Diane Fairclough, Senior Biostatistician,
provided expert review of the quantitative analysis procedures and interpretation of
results.
30


CHAPTER 4
RESULTS
Characteristics of the Sample
A total of 1,429 female FDRs were referred for participation in the study by
their female relative with breast cancer. Of FDRs referred, 1,081 (76%) completed
the baseline interview; 149 (10%) refused; 110 (8%) were unable to be contacted; and
35 (2%) were ineligible (due to age, cancer history, etc.). Another 52 FDRs (4%) did
not complete the interview because they prematurely ended the interview and could
not again be reached, or contact was not attempted because the study closed.
As indicated in Table 4.1, FDRs enrolled in the study were largely non-
Hispanic White (91%), and married (74%). The mean age of participants was 54
years (range 40-75 years). About one-third of participants had a high school
education, one-third had some trade school or college, and another third were college
graduates or had a post-college education. Over half of FDRs in the study were
sisters of women diagnosed with breast cancer, one-third were daughters, and 12%
were mothers. The mean time since FDRs learned of the index cases diagnosis was
10 months (range 1-39 months). Family history of cancer, defined as the number of
FDRs or second-degree relatives (SDRs) who ever had any type of cancer, for the
majority of FDRs (86%) was one affected relative (the index case).
31


TABLE 4.1: Sample Characteristics N=1081
* r', Characteristics ... %
Relation of FDR to Patient
Sister 636 58.7
Daughter 319 29.5
Mother 128 11.8
Age
40-49 506 46.8
50-59 289 26.7
60-69 194 17.9
70+ 92 8.5
Race/Ethnicity
White 983 90.9
African American 58 5.4
Hispanic 17 1.6
Other 23 2.1
Marital Status
Married 795 73.5
Other 287 26.5
Education
High School 329 30.4
Trade/Some College 355 32.8
College Graduate 217 20.0
Post College 140 12.9
Total Household Income
<$20,000 123 11.8
$20,000 $40,000 293 28.0
$40,000 $60,000 254 24.3
$60,000 $80,000 173 16.6
$80,000+ 203 19.4
Time Since Learning of Diagnosis of Index Case
<6 Months 300 27.7
6 to 9 Months 218 20.1
9 to 12 Months 409 37.8
12+ Months 156 14.4
Family History: Number of FDRs/SDRs with Any
Cancer (as reDorted by Index Case!
1 930 85.9
2 132 12.2
3+ 21 1.9
32


Results of Qualitative Analysis:
Themes in Womens Responses
Results of the qualitative analysis provide the rich details, contexts and
plausible explanations of the concrete quantitative results, which follow. Overall,
qualitative data analysis results reveal a diverse range of informational and support
needs among FDRs. Table 4.2 lists, in order of prevalence, the specific types of
needs reported by FDRs, with corresponding sample statements from FDRs
responses to the open-ended question.
TABLE 4.2: Categories of Specific Needs Expressed by FDRs N=554
Type of Need n % Sample Response
No Needs Expressed 529 41.9 I did not feel a need for it, but it was available.
Medical Information (for FDR) 205 37.0 Information on fibroid tumors; effects of estrogenclear up the confusion on the effects of drugs on breast cancer.
Emotional Support (for FDR) 175 31.6 Support groups for relatives to talk to who were in the same situation, to see how they deal with it.
Health Promotion Information 113 20.4 Programs teaching people to take responsiblity for life through diet, meditation, communication (like Dr. Dean Ornishs heart disease program).
Physician Communication, Accessibility, Sensitivity 74 13.4 It would be nice to set an appointment to meet the oncologist or physician, open to anyone in the family.
Risk Information 63 11.4 Information of your risks, for the family, at least the daughters.
Print Material 62 11.2 Reading material about cancer, what it is, how it starts, forms of treatment, risks and benefits of different treatments.
Programs,Classes, Seminars 54 9.7 I dont know enough about the programs that are available.
Emotional Support (for Patient) 51 9.2 Support groups very important for patients (church or otherwise).
Emotional Support (for FDR to Better Help Patient) 35 6.3 I would like to know more about how to help her more.
Other Need 29 5.2 Discounts on health insurance.
Video/ Multimedia 21 3.8 Video on treatments for cancer; programs on TV.
Medical Information (for Patient) 21 3.8 More information from medical staff for my sister, because she had to research it herself.
Mammography Financial Assistance 15 2.7 All females in the family should be able to have mammograms for free because they cannot afford to be screened and the cancer has been found in the family.
33


These results indicate that FDRs express substantial, diverse medical
information needs and concerns related to breast cancer in a close female relative, as
well as substantial need for emotional support. FDRs also report the need for
information related to health promotion and wellness. Specific modes of delivering
information and emotional support are also indicated.
No Needs
Results of the analysis showed that 42% of the women interviewed expressed
no additional psychosocial or informational needs. The majority of these FDRs stated
that they had resources available to them, including information and/or support
provided by health professionals, family, friends, and community groups. Most of
these FDRs reported using one or more available resources, while others perceived
having no needs at all.
My father is in medicine. I got lots of information from the American
Cancer Society. There are many cancers in the family. My mother [with
breast cancer] also gave me information.
It seems it hasn 7 impacted us all that much. My mother [with breast
cancer] is over 80, and therefore I dont feel Im as affected. It's more
important for ones with younger relatives.
34


Informational Needs
Medical Information. Respondents reported a wide range of medical
informational needs related to breast cancer, including: information about the
patients diagnosis and treatment (explained in laymans terms); the causes of
breast cancer; available treatment options; and expected treatment side-effects.
I wish we could have sat down and discussed exactly what was going on,
and saw what procedures were going to be done, and what options were
available. More education about her case for future use, if the family has
to deal with the cancer personally in the future. More details in the
information, not so general.
I could have [used some help to] understand the terms that were used; to
have more information on meeting with someone to help with the
terminology.
My sisters physician is unable to deal with the problem: she is so itchy
[now, since the termination of radiation],
1 live out in a small community. I can't read. I know nothing about cancer
since I do not read. IfJ could sit with someone that can speak in words
that I could understand.
Health Promotion. Information related to health promotion and wellness was
a prominent theme for FDRs. Specific areas of health promotion needs reported
include: breast cancer screening and prevention; self-care activities; and use of
alternative therapies.
I think that when my sister was diagnosed, I wanted to have someone to
ask how often I should have a mammogram.
35


1 would like to know about breast self-exam. I do my own, but I don't
know what I'm feeling. I wish I had a model that 1 could take home and
know what the difference in the feeling is. I'm very confused. Im 49 and I
have been doing it every month, and I still don't know what Im feeling.
I can do the exams, but it might slip through and who knows whose fault it
is. There's not enough support in the medical profession, because I do not
know how to take care of myself, because I am not in the medical
profession.
We 're really into nutrition. I would like to have had information
regarding what kinds offood to avoid to reduce the risks of cancer.
Health care providers should know more about that too, as well as
information provided as a supplement to care for cancer.
Something for daughters. Stress diet and exercise lists of found to be
helpful,' and why they are helpful.
Programs teaching people to take responsibility for your own life through
diet, meditation, communication, like Dr. Dean Ornishs heart disease
program.
Physician Communication. Availability, and Sensitivity. FDRs mentioned
feeling that the family is excluded, in terms of lacking access to health professionals
to obtain information, to have their questions answered, and more sensitivity and
compassion extended by the patients medical team to family members.
They never called any one of us to talk to us about her cancer.
I wish I had more information and more access to her doctors. Shes had
strokes and has bad short-term memory, so I didn't know what she needed.
More communication between the doctor and the family who is caring for
my mother.
36


They could have offered us an explanation why they didn't check my
mothers nodes. I didn 't like the explanation that, 'We don't chop up old
people. Provide a better explanation to the patient and family about
treatment and how it has changed over the years, especially when the
family has had a previous bad experience with it. This would help calm
the patients andfamilys nerves.
Doctor communication is extremely difficult. The doctors answers are
too broad. You re made to feel like just a number, not a family member.
This was hard, because 1 was so concerned for my mother. I wish that I
had communication with the doctor, even if you are far away. Yes, I think
at the time of the diagnosis, it was very cold andfactual. I wanted to be
with my mom. Regardless of the diagnosis, 1 was not honored that
request. More compassion.
Personal Risk for Breast Cancer. FDRs were concerned about their personal
and potential hereditary risk for developing breast cancer, the risk of breast cancer for
their other female family members, and the effects of lifestyle, diet, hormones and
other possible causative or preventive agents on risk.
People should know about their family background and how important
that it is a possibility of increased risk.
When they describe the type of cancer that your relative has, it is good to
know if that type is hereditary, the chances of survival, how they long they
thought it had been growing, all of the ramifications. So that if you do
what you were supposed to do, it would it help. Is it quantifiable? More
about diet. And whether [the diagnosis in the family member] will
increase or decrease your chances of getting breast cancer.
I wish I knew more about the history of where my sisters cancer came
from and to have this in a file for my daughter.
37


My doctor said a genetic test is not a good idea. I would like to have that
information. My daughters would be tested, and they re only 20 and 25.
Medical Myths about Breast Cancer. Although not a defined coding category,
myths about breast cancer were mentioned by several women, examples of which are
given to emphasize their prevalence and the need for information expressed by these
FDRs to help dispel such myths:
I always thought that cancer will kill you in no time, but my sister told me
that you could have it for years.
My sister [with breast cancer] won't fly because of her lymph nodes.
Therefore, more information on what they can or cant doproper
information to challenge myths and misconceptions.
Print .Video. Multimedia. Programs. Classes. Seminars. Various concrete
forms and modes of information delivery were mentioned by FDRs, including print
and multimedia material, programs, classes, seminars and telephone hotlines.
More reading materials, and more research pertaining to the situation on
hand. My mother got information, but the family did not get any.
Literature to read up on breast cancer and the percentages of familial
types of cancers. What types of things should a woman look for, what
about her health care? Video on treatments for cancer. What is known to
date about the risks of getting cancer? More than a two-page pamphlet
for non-scientific people.
Invite the family to the classes that the patient went to.
38


Emotional Support Needs
The need for emotional support related to having a mother, sister, or daughter
diagnosed with breast cancer was reported by a substantial number of FDRs. Types
of support reported include: support groups, emotional support from medical
professionals, improved and more extensive family support, community and church
programs, and support for the FDR to better help the family member diagnosed with
breast cancer.
Something needs to be out there for patients and the family to deal with
the emotional part. This would be VERY important.
Support groups for relatives to talk to, who were in the same situation to
see how they dealt with it.
I need a support group. This is very important, especially since I'm so far
away. For the patient and the family, a support group to give help and to
have someone to talk to.
Everyone involved needs to have more information and support in regard
to the post-treatment side effects and emotional trauma.
I need support, a toll-free hotline to speak with a professional.
Support for the FDR to Help Patient. When asked what would have been
helpful to women as FDRs, many responded in terms of the patients needs, with little
differentiation between the patients and FDRs needs. This was particularly true in
cases where the FDR expressed the need for support to better help her mother, sister,
or daughter with breast cancer.
39


Well, 1 have not contacted any group, but I would like to contact a group
who will help me to help my sister.
1felt like 1 needed to know what could I do to help my sister. I was
concerned that she was in denial, and 1 didn 7 know how to help, and I
didn't know if her nurses were knowledgeable or not.
We re a well-known family from a small town. It was very hard on ALL of
us. I don't think [my sister] went through the grieving process yet. I wish
there was more information on how to react to the situation as she goes
through the process of anger and depression.
I have so many questions about breast cancer myself. I have questions
about myself. After she had her surgery, I asked her if she looked at her
surgery, and she said, 'No. I have no knowledge about what to say to her.
This is good that you are calling me now, because as a family member,
maybe someone else could call to talk to me.
These narrative responses provide valuable insight into womens experiences
in having a close female relative diagnosed with breast cancer. The intricate web of
family bonds and interpersonal relationships are evident in these brief but descriptive
accounts. The qualitative data analysis clearly demonstrates that FDRs of breast
cancer patients have distinct and substantial psychosocial and informational needs.
40


Results of Quantitative Analysis
Distribution of Overall Needs
As shown in Table 4.3, more than half of FDRs (51%) reported some type of
psychosocial or informational need, while 42% expressed no needs, and 7% did not
know whether they had any type of need.
TABLE 4.3: Overall Distribution of Needs Expressed by FDRs N=1083
N %
Any Type of Need 554 51.2
No Needs 454 41.9
Dont Know 72 6.6
Missing 3 .3
Of those who reported any type of need (Table 4.4), a clear majority (76%)
said they had need for information, 41% emotional support needs, and 8% reported
some other type of need.
TABLE 4.4: Major Categories of Needs Expressed by FDRs N=554
n %
Information 410 74.0
Emotional Support 228 41.2
Other 43 7.8
41


Distribution of Needs by Key Demographic Variables
Variables evaluated for association with type of need were age, education,
ethnicity, family history of cancer, income, months since FDR learned of the patients
diagnosis, and relation of FDR to the patient. Results, as presented below in Table
4.5, show associations of key demographic variables with need for information and
emotional support. As age increases, expressed need for information is less. As
income increases, expressed need for information is greater. As education increases,
expressed need for both information and emotional support also is greater.
Additionally, the time of most need appears to be 6-9 months since FDRs leam of the
breast cancer diagnosis.
Logistic regression was used to determine whether these demographic
variables are predictive of FDRs information or emotional support needs. Results
showed that younger age predicts expressed need for information. In addition, more
education predicts both expressed need for information and emotional support.
42


TABLE 4.5: Distribution of Needs by Key Demographic Variables N=1009
Variable INFORMATION n % Significanc e EMOTIONAL SUPPORT n % Significanc e (p)
Age
40-49 yrs 222 46.4 107 22.4
50-59 yrs 117 42.7 64 23.4
60-69 yrs 50 29.4 41 24.1
70+ yrs 18 21.4 <0.001 14 16.7 0.614
Education
H.S. 100 33.0 62 20.5
Trade/ Some College 141 42.5 67 20.2
College Grad 98 48.0 50 24.5
Post-College 64 47.1 <0.001 43 31.9 0.006
Ethnicity
White 377 41.3 202 22.1
Other 27 36.5 0.423 22 29.7 0.132
Family History of Cancer: #FDRs/
//SDRs fas reDorted by Index Case)
1 355 40.8 202 23.2
2 49 40.8 25 20.8
3 6 31.6 0.619 1 5. 0.112
Income
<$20k 36 32.7 28 25.5
$20k-$40k 90 33.2 55 20.3
$40k-$60k 112 47.5 61 25.9
$60k-$80k 77 46.7 34 20.6
$80k+ 88 45.3 <0.001 45 23.2 0.945
Months Since FDR Learned of
Diagnosis
<6 mos 94 37.9 63 25.4
6-9 mos 103 50.2 51 24.9
9-12 mos 143 38.0 80 21.3
12+ mos 70 38.9 0.570 34 18.9 0.070
Relation of FDR to Patient
Mother 32 26.9 39 32.8
Sister 235 39.7 121 20.4
Daughter 143 47.9 <0.001 68 22.8 0.013
43


Distribution of Needs by Relationship to Patient
Womens expressed needs also were evaluated, based on FDRs relation to
their close relative with breast cancer. Results show significant differences for FDRs
relation to the patient:
1. Overall, daughters of women with breast cancer expressed the most
need for information, followed by sisters, then mothers.
2. Mothers of women with breast cancer expressed the most need for
emotional support, followed by daughters, then sisters.
Again, the logistic regression procedure was used, with the following result:
1. Being a mother of a daughter with breast cancer is a strong predictor of
expressed need for emotional support.
44


CHAPTER 5
DISCUSSION
The major finding of this study is that the majority of women who have a
mother, sister, or daughter diagnosed with breast cancer in the past year report related
informational and emotional support needs. The findings support those of previous
studies, which demonstrate general psychological and breast cancer-specific distress
among FDRs of breast cancer patients (Kash et al., 1992; Lerman, et al., 1993; Lloyd
et al., 1996; Audrain, Schwartz, Lerman, Hughes, Peshkin, & Biesecker, 1998;
Gilbar, 1998; Schwartz, Lerman, Audrain, Celia, Rimer, Stefanek, Garber, Lin, &
Vogel, 1998), worries about the affected relative (Hughes et al., 1996), concerns
about personal risk, feelings of vulnerability, and worry about developing breast
cancer (Stefanek & Wilcox, 1991; McCaul et al., 1996; Audrain et al., 1998; McCaul
et al., 1998). The experiences of FDRs in this sample population are not unlike those
of family caregivers of cancer patients, as demonstrated in previous studies. Common
concerns and needs of family caregivers in the literature with those of FDRs in this
study include: information about the disease and treatment, psychological and
spiritual support, and access to financial advice (Mor et al., 1992; Braithwaite, 1992;
Kristjanson et al., 1994; Laizner et al., 1993; Saleset al., 1992). In addition, the
current findings support those in the literature which specifically pertain to the need
45


for information by family members of cancer patients (Love et al., 1985; Brandt,
1991; Carlsson et al., 1997, 1999). These common informational needs include: basic
knowledge of cancer and its treatment, information about the diagnosis and its
implications; the treatment plan and goals, possible short- and long-term treatment
side-effects, self-care and health promotion, and heredity related to cancer. This
study also supports the finding of Tringali (1986) that need for information is stronger
than need for emotional support among family members of cancer patients.
The finding that daughters of women with breast cancer are the FDRs most
likely to report need for informational support (compared to sisters and mothers) is
consistent with Gilbar & Borovik (1998), who found daughters (albeit a small
sample) to be most in need of medical information. Together, these studies suggest
that a daughter, in particular, may seek medical information (as a buffer) to better
cope with her mothers illness, or to strengthen her ability to be a primary support
person for her mother. Another factor suggested by the thematic responses in the
current data is the daughters role as the family information gatherer and key
informant to provide information about her mothers diagnosis and treatment to other
family members.
As daughters constitute the youngest cohort of FDRs, it is plausible that their
information-seeking is related to greater knowledge, access to technology, and
46


expertise, which stem from educational opportunities not available to their mothers.
The finding that 48% of daughters comprise the largest group of FDRs who
report informational needs should not obscure that which shows 40% of sisters and
27% of mothers to also express need for information. Further research is strongly
suggested (such as focus groups, followed by a wide-scale needs assessment) to
examine the mechanisms of providing appropriate, breast cancer-related information
for daughters, sisters, and mothers of women with breast cancer.
Mothers, on the other hand, were found as most likely to report need for
emotional support. Mothers of adult daughters with breast cancer are thereby not
unlike mothers of children with other cancer, who also experience high levels of
emotional distress, as clearly demonstrated in the pediatric literature (e.g., Hoekstra-
Weebers et al., 1998; Speechley & Noh, 1992). Mothers constitute the oldest of the
three FDR cohorts in the current study, were less likely than daughters or sisters of
women with breast cancer to report informational needs, and older age was shown as
predictive of less expressed need for breast cancer-related information. These
findings together may suggest that mothers underreport their need for information
(and thereby lack the buffering effects of adequate information), or that their greater
need for emotional support exists despite access to adequate information related to
breast cancer. Assuming that mothers do have adequate information, it is possible
47


that their social support is limited by the age, higher morbidity, and increasing
mortality among their social networks. Further investigation is needed to ascertain
whether older women truly have their informational needs met, and if not, what
barriers exist to their obtaining such information. The finding that being a mother of
a woman with breast cancer is strongly predictive of expressed need for emotional
support is, in and of itself, evidence in support of future counseling interventions.
Such interventions might utilize baseline measures to assess and subsequently address
mothers emotional distress to facilitate coping, adjustment, and improve future breast
screening adherence of these older women.
This study also found that the time of most expressed need for emotional
support is 6-9 months since FDRs learn of their female relatives breast cancer
diagnosis. This time period may or may not represent 6-9 months post-diagnosis. It
is reasonable to presume that these time periods coincide, based on the closeness of
female, familial relationships and recognized phases of the cancer trajectory. The
close relationship or association among most female family members would likely
permit the FDRs knowledge of the breast cancer diagnosis soon after its occurrence.
The end of the acute phase of the cancer trajectory typically occurs 6-9 months post-
diagnosis, when most breast cancer patients are finishing chemotherapy and/or
radiation treatment and suffer the most intense treatment side-effects, which may
48


explain FDRS greater need for emotional support during that time. Nevertheless,
caution is urged in the interpretation of this finding. Further research is suggested to
determine optimal timing for interventions to address FDRS emotional support
needs.
Collectively, the findings of this study support intervening with the sisters,
mothers, and daughters of diagnosed breast cancer patients. Providing adequate
information and emotional support to FDRs would expand their breast cancer-related
awareness and knowledge, promote enhanced adjustment and coping with the
relatives diagnosis, and potentially result in improved and more adherent breast
cancer screening behaviors among FDRS.
Strengths of the Study
The use of both quantitative and qualitative methods is a strength of this
study, in providing a richer and deeper understanding of FDRs experiences than
would otherwise be possible. The open-ended question and qualitative analytic
techniques allowed the capturing of contextual meaning of FDRs reported
psychosocial and informational needs, which might have been lost or diminished by
use of a standardized scale of measure. Quantitative analysis permitted the use of
standardized procedures to statistically examine concepts in the form of distinct
49


variables, to find correlations of variables in the data subset with psychosocial
variables in the larger set of data, and to allow future replication. A second strength
of the study is the large sample size, which allowed for identification of multithematic
needs and generalizability of results to the larger population. A third strength of the
study is the use of carefully selected qualitative data analysis procedures, based on
established methodologies and conducted under expert review of both qualitative and
quantitative researchers. Another strength is use of the telephone interview in
facilitating the large sample of FDRs to be reached, having most of the strengths of a
face-to-face interview, but for about half the cost.
Limitations of the Study
A limitation of this study is the homogeneous sample of predominantly white,
well- educated women with mid- to upper-range incomes. This occurred despite
intense efforts by the original study team to recruit minority and underserved subjects
through medical centers having large minority and/or underserved populations.
Caution must be exercised in the extrapolation of these findings, with further research
suggested to investigate the psychosocial and informational needs of minority and
underserved women in families experiencing breast cancer in a female family
member. Another contributing factor in the sample being homogeneous was family
50


cancer history, as the clear majority (86%) have just one affected first- or second-
degree relative (the index case), largely due to the exclusion of families with
exceptionally strong family cancer histories. A second potential limitation is ignoring
potential clustering, given that individuals from within the same family groups are
included in the study and responses may not be statistically independent. However,
the study team checked interclass correlation and found it not to be a problem for the
current analysis. The primary limitation is potentially compromised validity, based
on ambiguity within the question structure, and the method used to record the data.
First, the question did not differentiate between useful and needed resources, nor
between available and unavailable resources; the data thus reflected all of these
conditions. Although these inconsistencies made initial coding of the data
cumbersome, the coding team decided early in the coding process to compensate by
coding only types of needs in which FDRs reported being deficient. Second,
interviewers recorded the data by typing FDRs responses into a text field of the
computerized interview instrument. Interviewers varied in their recording methods,
sometimes recording reponses verbatim, other times recording paraphrased responses,
given time restraints imposed by the overall length of the interview instrument. This
variability in data recording may have resulted in lost data or missing context.
Attempts were made to minimize this loss during the data collection period through
51


ongoing interviewer training and supervision, and during the coding process by
ongoing use and revision of operationalized definitions of thematic categories,
standardization of coding, and intercoder agreement in coding ambiguous responses.
Another potential limitation is that the length of the interview may have produced a
fatigue bias in the data: the open-ended question typically occurred in the last
quarter of the 30-minute telephone interview, when respondents may have been tiring.
The age eligibility restriction (40+ years) was also a limitation of this study.
Inclusion of younger FDRs would strengthen the sample in being more representative
of the population and also would provide more complete insight into the psychosocial
and informational needs of female FDRs at higher risk for breast cancer, based on
family history.
52


CHAPTER 6
IMPLICATIONS
The diagnosis of breast cancer is a crisis for the family system. Strong
reactions of fear, anger, uncertainty and helplessness are not confined to the woman
with breast cancer, but extend to the family members and significant others who are
involved in that individuals life. Family members look to each other for assistance in
dealing with their problems of stress. Although the nursing, sociological, and
psychological literature is replete with statements about the role of family in reducing
stress and promoting positive physical and emotional adjustment to chronic illnesses,
little attention has been devoted to the needs of the female, first-degree relatives of
women with breast cancer.
This study has implications for clinical practice. It is important that health
professionals attend to female FDRs concerns related to the patients breast cancer
experience, in order to fully understand and address both the patients and FDRs
needs. Patients and families, in turn, can make more useful judgments concerning
medical decisions and health-related behavior. A written questionnaire to be
completed by FDRs and discussed with the physician during a scheduled visit might
serve as a cost-effective and efficient tool for practitioners to understand and address
their needs. Practitioners might provide in-office videos or information packets to
53


FDRs, as expedient means of conveying basic information about the diagnosis and
treatment of breast cancer once it occurs, as well as breast cancer screening practices
and guidelines for family members. Health professionals also can refer family
members to cancer information and counseling hotlines to have their questions
answered and their support needs addressed. These efforts would likely facilitate the
familys ability to function as an ongoing support system for the patient, and would
likely improve breast cancer screening compliance among FDRs at increased risk due
to their family history.
This study also has implications for research. The specific informational and
emotional support needs of FDRs identified in this study support the development and
testing of counseling interventions for women having a mother, sister, or daughter
diagnosed with breast cancer. Counseling interventions should address the emotional
impact of the illness on FDRs and the interplay between the patient and FDR,
especially those FDRs who are information seekers. Researchers can also work
collaboratively with clinicians to develop materials for use in clinic practice, which
address FDRs needs for information and emotional support.
Addressing the needs of women with a family history of breast cancer will
empower them with the knowledge and resources to better understand their personal
risk and become more proactive in their breast cancer screening behaviors and overall
54


health promotion practices. Ultimately, these efforts will result in less morbidity,
reduced mortality, and cost containment within the health care system.
55


APPENDIX
TELEPHONE INTERVIEW INSTRUMENT
56


FIRST-DEGREE RELATIVE
BREAST BASELINE CORE INTERVIEW
INTERVIEWER ID: DATE: / /
SUBJECT ID: START TIME:
INDEX CASES FIRST NAME: - - :
FDRS RELATIONSHIP TO INDEX CASE:
1.
Hello! May I please speak to__________? OR Is___________home?
[name of FDR] [name of FDR]
Not a good time - 1a [Reschedule, page 2]
Not home - 1a [Reschedule, page 2]
FDR refuses -> 1c [Refusal exit, page 3]
Household refuses - [|f someone else in household
refuses, mention that we spoke with {FDRs kinship}, who wanted
us to offer our new program to {FDR}, she may be expecting our
call. About a week ago, we mailed her a letter and some info
about this call. Is there a good time to try again to reach her?
- 1a [Reschedule, page 2]
Yes ^
Hello,__________. Your name and phone number were given to us
by your {index case kinship, index name}. My name is________and Im
calling from AMC Cancer Research Center to see if youd be
interested in joining our new program for the close female
relatives of women who have had breast cancer.
By any chance, has your {index case kinship} already mentioned that
wed be contacting you about this program?
Yes
No
57


Did you receive the letter and brochure telling you about this
program?
Yes -> Im glad or I see that] you received the information.
Let me explain briefly what this is all about. -
[Informed consent, page 5]
NO -> Oh, Im sorry the brochure didnt reach you. Ill
verify that our records indicate the correct address.
Let me explain briefly what this is about. ->
[Informed consent, page 5]
la. SCHEDULING A BETTER TIME TO REACH FDR...
Is there a more convenient time?
Yes -1b.
No - END CALL
lb. SCHEDULING A BETTER TIME TO DO INTERVIEW...
What would be a better date and time to call back within the next
couple of weeks? Date: _______Time: _____________
At what phone number should I try to reach you/her?
Home: ____________________
Work: ____________________ Other: ______
Would you like to schedule an appointment for someone to contact
you at that time?
Yes
No ->END CALL
58


1c.
REFUSAL EXIT AND CLOSING
Thats no problem. You certainly dont need to feel any obligation
to participate. Just for our records, Id like to get a little
information before we hang up. It will only take a couple of
seconds.
Have you ever had a mammogram?
B.
1 Yes ->B
2 No ->C
Q 888 Dont know ->c
Q 999 Refused ->c
Was your most recent mami months?
1 Yes ->c
2 No -> D
Q 888 Dont know - D
Q 999 Refused - D
HadMamm
Last12
C. Can you remember about when it was?
MammDate
1 Within the last 3 months -> E
2 Between 3 and 6 months ago - E
3 Between 6 and 9 months ago - E
4 Between 9 months and 1 year D) (Q 0 1 m
888 Dont know -> E
Q 999 Refused E
59


D. Can you remember about when it was?
5 MammDate Between 1 and 2 years ago - E
6 More than 2 years ago - E
888 Dont know - E
Q 999 Refused - E
What is the highest grade or level of formal education that
you have completed? School
1 None 7 College Graduate
2 Elementary s Some Graduate School
3 Junior High 9 Graduate or
4 High school Professional Degree
5 Trade/Tech school see Don't Know
e Some College 999 Refused
F. How old were you on your last birthday? FhsDegiieRi^^
Age:
888 Dont Know
999 Refused
G. One last question before I go. Would you mind sharing with me
why youd rather not do this interview? -RrscegreeRetetwes.deci
60


VERBAL INFORMED CONSENT
A. VERBAL INFORMED CONSENT SECTION
We are interested in learning more about how breast
cancer affects the lives of others in the family. Whether or
not you agree to help us is completely up to you and your
decision will have no effect on the care or treatment of your
[kinship of Index Casel.
If you decide to join this program, the information you give
us will be kept completely confidential and will not be
connected with your name.
After this first interview, there will be two follow-up calls
made over the next year, one in 3 months and one in 12
months. These calls will be much shorter.
Our conversation will be tape recorded for quality control
purposes.
B. Do you have any questions?
Q YES - [Continue answering questions about participation,
then obtain Verbal Informed Consent in C.]
NO - C [Verbal Informed Consent]
C. Would you be willing to help us with this project?
NO (CONSENT NOT GIVEN = REFUSAL) 1c
[Refusal exit, page 3]
61


D. Do you have some time to talk with me right now for this first
interview?
YES - [Continue to Baseline Core Interview, next page]
NO 1c [Refusal exit, page 3]
TO BEGINNING OF DATA COLLECTION...
62


BASELINE CORE INTERVIEW SECTION A
1. First, how old were you on your last birthday?
LI Age: | II lFirstbegreeMelavjtes:AgS
888 Dont know
999 Refused
2. Would you say your health in general is:
1 Excellent
2 Good
3 Fair
4 Poor
Q 888 Dont know
LI 999 Refused
3. Have you ever had a major illness
diabetes, stroke or cancer?
1 Yes - 4
2 No 6
see Dont know -> 6
999 Refused -> 6
such as heart disease,
Illness
4. What type of illnesses have you had? [check all mentioned]
Heart disease/heart attack ->6 Heart
Diabetes - 6 Diabetes
Stroke - 6 Stroke
Cancer -> 5 Cancer
Other (SPECIFY] - 6 Othiviaior
63


5. What type of cancer was it? What age were you when this
cancer was diagnosed?
[CHECK ALL MENTIONED]: [ENTER AGE AT DX]:
ese 999
Breast Breast ! I i I don't know
refused BrSoe
Lung Liipg I ii I dontknow
refused LungAge
Ovarian pvariari r n _| dontknow
refused OvarAge
Uterine/cervix uterine i n I don't know
refused UterAge
Non-melanoma skin cancer ^ i I Qdon't know
refused SkiriAge
Melanoma Mejarl i i I Qdon't know
refused MelanAge
Colo-rectal could be colon or rectum Cdogec i i I Qdon't know
refused CbloAge
Other (SPECIFY) i i I adon't know
refused Othcan OthDesc OtherAgl
INTERVIEWER: If response to above was anything other
than non-melanoma skin cancer, exit
with
ineligible FDR closing.
6. Thinking back over the last 12 months, that is, since_____ [THIS MONTH]
1996, about how many times would you say you've been to see a
doctor for any reason ? DocFroj
# Times: OO (ENTER ZEROS IF NONE)
808 Dont know
999 Refused
64


7.
And when was the last time you had a general check-up or
routine physical?
PfiysBal
// [use PROBING TECHNIQUES]
mm dd yy
eaa Dont know
999 Refused
8. Now Id like to ask you a few questions about your breast cancer
screening behavior. And, for the purposes of our research project,
if youve had a mammogram, that is, an x-ray of the breast, Ill be
asking you when and where you had it.
Have you ever had a mammogram?
1 Yes > 8-a Hadl^amm
2 No - 8-e
sea Dont know - 8-e
999 Refused 8-e
8a. How many mammograms have you had in the last 24 months?
2 o 0 MammNum
1 1
2 2
3 3
4 4 or more
ess Dont know
999 Refused
65


8b. Was your most recent mammogram within the last 12 months?
1 Yes Lasti2
2 No
ass Dont know
999 Refused
8b-1 Can you remember about when you had your most recent
mammogram? Woujd you say it was over a year ago, or within
the past year? mIMII
Within the past year...
Would you say it was...
1 within the last 3 months
2 between 3 to 6 months ago
3 between 6 to 9 months ago
4 between 9 to 1 year ago
8B8 Dont know/Not sure
More than a year ago....
Would you say it was.. .
5 between 1 to 2 years ago
e over 2 years ago
999 Refused
INTERVIEWER: Probe for season / weather / other key events, e.g.,
birthdays, holidays, new job move, etc., to assist
recall
8b-2. Can you remember where you had the mammogram?
Clinic Name: ________________________________
City: _______________________________________
Glinid & libation
8c. Do you plan to get another mammogram?
1 Yes -> 8d
2 No -> 9
ese Dont know/Maybe -> 9
999 Refused -> 9
PlanMamm
66


8d. When do you think youll get your next mammogram ?
NextDate
1 within 3 months from now - 9
2 within 3 to 6 months from now - 9
3 within 6 to 9 months from now - 9
4 between 9 mos. to a year from now - 9
5 between 1 to 2 years from now - 9
6 over 2 years from now - 9
a see Dont know/Not sure > 9
999 Refused -> 9
Probe & select proper response category.
[QUESTIONS BELOW ARE FOR NEVER-HAD GROUP
ONLY- Q.8 = N0]
8e. Are you planning to get a mammogram in the future?
1 Yes > 8f FutMamm
2 No - 9
see Dont know/Maybe-* 9
999 Refused 9
67


When do you think you might be getting your mammogram? iutDate
1 within 3 months from now 9
2 within 3 to 6 months from now -> 9
3 within 6 to 9 months from now -> 9
4 between 9 mos. to a year from now 9
5 between 1 to 2 years from now -> 9
b over 2 years from now 9
Q 8BB Dont know/Not sure - 9
Q 999 Refused -> 9
Probe & select proper response category!
EVERYONE IS ASKED THE REMAINING QUESTIONS:
9. In your opinion, how effective are screening mammograms in
detecting breast cancer? Would you say....
1 Very effective
2 Effective
3 Somewhat effective
4 Not very effective
5 Not at all effective
bbb Dont know/Not sure
999 Refused
10. How about a physical examination of the breasts by a health
professional? In your opinion, how effective are physical
examinations of the breasts by a health professional in detecting
breast cancer? Would you say... Examine1
68


1 Very effective
2 Effective
3 Somewhat effective
4 Not very effective, or
5 Not at all effective?
888 DONT KNOW/NOT SURE
999 REFUSED
lla. Has your {......}s breast cancer diagnosis had any effect on
your desire to get a mammogram? ||§§
1 Yes -> 11b
2 No -> 12
bbs Dont know/Maybe -> 12
ggg Refused > 12
llb. Has it increased your desire or decreased your desire to get a
mammogram? Desire
1 Increased desire
2 Decreased desire
ass Dont know
999 Refused
12. Since her diagnosis with breast cancer, has [NAME OF INDEX CASE-1 eVer
suggested that you get a mammogram? MammSugg
1 Yes
2 No
ess Dont know/Maybe
999 Refused
INTERVIEWER: Continue with next section, Section B.
69


BASELINE CORE INTERVIEW SECTION B
(PSYCHOSOCIAL ASSESSMENT)
12a. How long has it been since you learned about your I...KINSHIP...1 S breast
cancer? Weeks
Weeks: | || ]
ess Dont know
999 Refused
13. The next question Id like to ask you is...
How stressful has vour s [...KINSHIP...] 4 Very stressful
breast cancer diagnosis been for you? Q 3 Moderately stressful
2 Not very stressful
Stress 1 Not at all stressful
Q 888 Dont know
Q 999 Refused
70


INTERVIEWER: For all questions below, circle the numeric score for the
responses given.
14.
Now, Im going to read a list of comments made by some people who
have a close relative with cancer. Please tell me how frequently these
comments were true for you during the past seven days. Im going to
read a statement and Id like you to answer if this occurred..not at
all, rarely, sometimes", or often. These statements all refer to a
relative having breast cancer.
Not
at all Rarely Some- Often
times
DK Refused
ill
1. I thought about my_____s 0 13 5
breast cancer when I didnt
mean to.
888 999
HI
2. I avoided letting myself get upset
when I thought about it or was
reminded of it. 0 13 5
888 999
IES3
3. I tried to remove it from my memory. 0 13 5
888 999
in
4. I had trouble falling asleep or staying
asleep, because pictures or thoughts
about it came into my mind. 0 13 5
888 999
71


Not
5. DK Refused IES5 I had waves of strong feelings at all Rarely Some- times Often
6. about it. 888 999 IES6 I had dreams about mv 's 0 1 3 5
7. breast cancer. 888 999 IES7; I stayed away from reminders 0 1 3 5
8. of mv breast cancer. 888 999 IES8 I felt as if it hadnt happened or 0 1 3 5
9. it wasnt real. 888 999 IES9 I tried not to talk about my 0 1 3 5
's breast cancer. 888 999 I 0 1 3 5
10. Pictures about it popped into my mind. 0 1 3 5
888 999
ieM
11. Other things kept making me think
about it. 0 13 5
888 999
1ES12
12. I was aware that I still had a lot of
feelings about it but I didnt deal
with them. 0 1 3 5
888 999
Not
72


13.
14.
15.
15a.
15b.
DK Refused
HI
I tried not to think about my
________'s breast cancer.
888 999
IESli
Any reminder brought back
feelings about it.
888 999
at all Rarely Some- Often
times
0 1 3 5
0 1 3 5
My feelings about it were kind
of numb. 0 1 3 5
888 999
Now I'd like to ask you some questions about breast cancer risk.
First, consider other women your same age.
How high or low do you think your risk is
of getting breast cancer compared with
other women your age who ALSO have
a close relative with breast cancer?
Risk!
How high or low do you think your risk
is of getting breast cancer compared
with other women your age who DO
NOT have a close relative with breast
cancer? §sk2
5 Much higher
4 A little higher
3 The same
2 A little lower
1 Much lower
O BBS Dont know
O ggg Refused
5 Much higher
4 A little higher
3 The same
2 A little lower
1 Much lower
Q B6B Dont know
Q ggg Refused
73


15c. How concerned are you about getting
breast cancer? Would you say...
Concern
4 Very concerned
LI 3 Moderately concerned
L) 2 Not very concerned
1 Not at all concerned
888 Dont know
999 Refused
15d. How did the diagnosis of your_______s breast cancer make you feel
about your own chances of getting breast cancer:
1 It made you feel your chances were less ChanoeJ
LI 2 It didnt change your feelings
3 It made you feel your chances were a little more
4 It made you feel your chances were a lot more
888 Dont know
999 Refused
During the past month, have thoughts 1 Not at all or rarely
about your chances of getting breast 2 Sometimes
cancer affected your mood? Would you say... 3 W/l I Iwlll $ Often
ji/looij 4 Almost all of the time
LI 888 Dont know
Q 999 Refused
74


17.
How important do you feel the following practices are for staying
healthy?
Very Somewhat Not very Not at all
Would you say... Important Important Important Important

Eating the right foods
888 999 Patina
2 3 4
Having a mammogram every 1
year
888 999 nm
-v* Doing monthly breast self-exam 1
888 999 BSE
^ Talking to a health care provider
about family history of breast
cancer 1
888 999 Provide!
Having breasts examined by a
health professional every year 1
888 999 Physexam
2 3 4
2 3 4
2 3 4
2 3 4
4- Having a screening test for
colon cancer every year 1 2
888 999 a$orjj
Having a screening test for
prostate cancer every year 1 2
-r'-rr.-i
888 999 Prostate
Wearing seat belts 1 2
888 999 Sea?
3 4
3 4
3 4
Having a PAP smear every year 1 2 3 4
888 999 pap|
75


18.
Now, please tell me how much you would agree or disagree with the
following statements:
Im always optimistic about my future
Generallv. would vou sav that vou.... s Agree a lot
4 Agree a little
Optimis 2 Disagree a little
1 Disagree a lot
3 Neither
088 Dont know
999 Refused
19. "In general, people have no control over whether theyll get cancerJ
Would you say that you.... s Agree a lot
4 Agree a little
WieB 2 Disagree a little
1 Disagree a lot
3 Neither
888 Dont know
999 Refused
20. "In general, women have no control over whether breast cancer will
be detected early
Would you say that you.... 5 Agree a lot
4 Agree a little
Eaijy 2 Disagree a little
1 Disagree a lot
3 Neither
888 Dont know
999 Refused
76


BASELINE CORE SECTION C
(DEMOGRAPHICS SECTION)
Now I would like to ask you a few more questions to give us an idea of who
were reaching with this program..
21. What is your racial background? Would you say...
1 White /Non-Hispanic
2 Black/African-American
4 Hispanic
3 Asian/Pacific Islander
5 Native American/Alaska Native, Native Hawaiian
6 Some other group? IDENTIFY: ___________________
ess Dont know RareDesc
999 Refused
22. And what is your marital status?
2 Married/Living as Married Marital
3 Separated
4 Divorced
5 Widowed
1 Single
6 Other
ess Dont know
999 Refused
77


23. What is the highest grade or level of formal education that you have
completed? school
1 None
2 Elementary
3 Junior High
4 High school
5 Trade/Tech School
e Some College
7 College graduate
8 Some graduate school
9 Graduate or professional degree
see Don't Know
999 Refused
24. How strong would you say your religious or spiritual faith is?
1 Very strong Rugous
2 Moderately strong
3 Not very strong
4 Not at all strong
see Dont know
999 Refused

25a. What is your current employment status?
1 Full-time
2 Part-time
3 Not currently employed
4 Retired
5 Other: pis. Specify
78


ess Dont Know
999 Refused
V v~ n
JobDesc
25b. Do you have a regular doctor or clinic that you visit for health
care? igg
1 es
2 No
888 Dont Know
999 Refused
25c. Do you have health insurance of any kind, including private, Medicaid
or Medicare?
1 Yes 25d
2 No - 26
see Dont know 26
999 Refused 26
25d. What type of health care coverage do you use to pay for most of your
medical care ? Is it coverage through...
NOTE: More than one answer can be checked.
Your employer? Ins1
Someone elses employer? jns2
A plan that you or someone else buys or pays for? jn|3
Medicaid Ins4;
Medicare or medical assistance program ins5
a The military (e.g, VA or CHAMPUS) Insfj
Some other source? Ins7
Dont know Ins8
Refused InsS
79


25e. Does your health plan pay for screening mammograms?
1 Yes
2 No
888 Dont know
999 Refused
> 26 PayMamij)
-> 26
-> 26
- 26
26. The next questions asks about your family income. This
information, which will be treated as confidential, is important
because it helps us describe the types of families who are joining
this study. During the previous year, what was your total
household income, from all sources and before taxes? Was it
less than $50,000 or more than $50,000?
IF LESS THAN $50.000 ..____________________________________IF MORE
THAN $50.000
Income
1 Less than $10,000 6 $50,000 - $60,000
2 $10,000- $20,000 7 $60,000 - $70,000
3 $20,000 - $30,000 8 $70,000 - $80,000
4 $30,000 - $40,000 9 $80,000 - $90,000
5 $40,000 - $50,000 Q 10 More than $90,000
888 Dont know
999 Refused
80


BASELINE CORE SECTION D
(EXPERT WITNESS SECTION)
Thank you for answering these questions. Now, Id like to ask you to share
any ideas you might have about what kinds of support, information, or
programs that would be useful for close relatives of breast cancer patients.
For instance, is there anything that people in health care or health education
could have offered you that would have been helpful? (PROBES: would you
have benefited from.. brochures to read? .. Talking to your relatives doctor
or nurse? .. A support group?) insighi
INTERVIEWER: Write comments given, if
any...
81


INTERVENTION GROUP SEGUES INTO COUNSELING PROTOCOL-
THIS PAGE: CONTROL GROUP ONLY
We have now completed everything we need to cover at this time. This has
been a lengthy interview and we greatly appreciate your time and
participation.
We will be calling you again in three months to do a brief follow-up on this
call.
INTERVIEWER : Verify records; indicate correct mailing address
and phone numbers for 3 month follow-up interview and future
correspondence. : : . _.
Name: ___________________________________________________
Address: ________________________________________________
City: _________________State: __________ Zip code: ______
Phone: _________________________________
These are all the questions I have. Thank you very much for taking the time
to talk with me today. The information youve provided will be very helpful to
other relatives of cancer patients in the future.
END OF INTERVIEW
End Time: | || | .* | || |
Indicate if respondent has refused future correspondence
BiMliheStUdv.'inS ______ ^ __
Refused 3-month follow-up lasel^si^^rnbnttj
82


EXIT SCRIPT AND CLOSING FOR INELIGIBLE FDRS
A. Im sorry, we didnt realize youve had cancer yourself. Although
this project is specific to first-degree relatives without cancer, we
do appreciate your interest and time.
I would like to mail you, free of charge, some information on
breast cancer and the latest screening recommendations.
B. Should we mail the packet to the same address we used for the
letter we sent you?
Yes - Okay, well do that.
No - To what address would you like the mailing
sent?
Name: _________________________________________________
Address: ______________________________________________
City: _________________ State: ____ Zip code: _________
C. I can let you go now, unless you have any questions.
Thank you very much for your time... Good-Bye...
END CALL
End Time:
83


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Full Text

PAGE 1

PSYCHOSOCIAL AND INFORMATIONAL NEEDS OF FEMALE FIRST-DEGREE RELATIVES OF BREAST CANCER PATIENTS by Brenda Carol Kluhsman B.A., University of Colorado at Denver, 1991 A thesis submitted to the University of Colorado at Denver in partial fulfillment of the requirements for the degree of Master of Social Science 1999

PAGE 2

1999 by Brenda Carol Kluhsman All rights reserved.

PAGE 3

This thesis for the Master of Social Science degree by Brenda Carol Kluhsman has been approved by Lori A. Crane Lari B. Wenzel Date

PAGE 4

Kluhsman, Brenda Carol (M.S.S., Social Science) Psychosocial and Informational Needs ofFemale First-Degree Relatives ofBreast Cancer Patients Thesis directed by Associate Professor Kitty K. Corbett ABSTRACT Background: Despite evidence that family history of breast cancer increases a woman's personal risk for developing the disease, little is known about the specific needs of women related to their experience ofbreast cancer in a close female relative. This study sought to describe the important issues and related psychosocial and informational needs of female, first-degree relatives (FDRs) of women with breast cancer. Methods: Qualitative and quantitative techniques were used to analyze data from an open-ended question in a telephone interview with 1 ,081 women (age 40+ years), having a mother, sister, or daughter diagnosed with breast cancer in the past year. Important issues for FDRs were described, and associations between FDRs' characteristics and their specific psychosocial and informational needs were evaluated. Results: More than half ofFDRs reported informational or emotional support needs related to their affected relative's breast cancer. Daughters of women with breast cancer expressed the greatest need for information, while mothers reported the most need for emotional support. Key informational needs identified include: medical information regarding the patient's diagnosis and treatment; more access to and communication with the patient's medical team; information about personal risk, breast cancer prevention and screening information; health promotion tips; print and lV

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video and programs to obtain cancer information. Specific emotional support needs include: support having other women to talk with who also have a close relative with breast and emotional support for FDRs to better help the affected relative. Age was negatively associated with expressed need for information. Education was positively associated with reported need for information and need for emotional support. Income was positively associated with expressed need for information. Conclusion: Female, first-degree relatives of women with breast cancer report a wide range of informational and emotional support needs. Health care providers should address the concerns among these women at higher risk for breast cancer to strengthen family support for the breast cancer patient and promote screening of her female relatives. Counseling interventions which address FDRs' psychosocial and informational needs are recommended. Key Words: Breast Cancer, Psychosocial, Information, Support This abstract accurately represents the content of the candidate's thesis. I recommend its publication. Signed v

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ACKNOWLEDGEMENT My sincere thanks to Alfred C. Marcus, Ph.D., Dennis Ahnen, M.D., Diane Fairclough, Dr. P.H., and the staff of the Cancer Prevention Research Unit at AMC Cancer Research Center for their dedicated effort in conducting the original research upon which this manuscript is based; to Lucinda Bryant, Kathy Plomer and Alanna Kulchak Rahm for their coding expertise; to Jana Everett, my academic advisor for her guidance and support; and to Kitty Corbett, Ph.D., Lori Crane, Ph.D., and Lari Wenzel, Ph.D. for their gracious mentorship.

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CONTENTS Figures........................................................................... IX Tables........................................................................... x CHAPTER 1. PROBLEM STATEMENT ............................................................................ 1 2. THEORETICAL LITERATURE .................................................................. 3 Personal Meaning ofillness .................................................................... .4 The Family Social Network and Illness ................................................... 6 The Family Social Network and Cancer .................................................. 9 Infonnational Needs of Cancer Patients and Their Families ........................................................................ 1 0 Social Support Needs of Cancer Patients and Their Families ........................................................................ 11 The Family Social Network and Breast Cancer ....................................... 13 Studies ofFirst-Degree Relatives of Breast Cancer Patients ................................................................................... 15 3. METHODS .................................................................................................... 20 Study Design ............................................................................................ 20 Study Setting ............................................................................................ 20 Subjects .................................................................................................... 21 Enrollment Procedures ............................................................................. 22 Data Collection ........................................................................................ 22 Vll

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Data Analysis ........................................................................................... 23 Coding Procedures .................................................................. 24 Qualitative Analysis Using NUD*IST .................................... 28 Quantitative Analysis Using SPSS ...................................... 29 4. RESULTS ...................................................................................................... 31 Characteristics ofthe Sample .................................................................. .31 Results of Qualitative Analysis: themes in Women's Responses .......... 33 No Needs ................................................................................. 34 Informational Needs ................................................................ 35 Emotional Support Needs ....................................................... 39 Results of Quantitative Analysis ............................................................. .41 Distribution of Overall Needs ................................................ .41 Distribution ofNeeds by Key Demographic Variables ......... .42 Distribution ofNeeds by Relationship to Patient .................. .44 5. DISCUSSION ................................................................................................ 45 Strengths of the Study .............................................................................. 49 Limitations of the Study ......... ., ............................................................... 50 6. IMPLICATIONS ........................................................................... ............... 53 APPENDIX TELEPHONE INTERVIEW INSTRUMENT .............................................. 56 BIBLIOGRAPHY ...................................................................................................... 84 Vlll

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FIGURES Figure 3.1 Editing Analysis Style ................................................................................... 25 3.2 Example of Data Coding ................................................................................ 26 ix

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TABLES Table 2.1 Studies Reporting Psychosocial Sequelae in First-Degree Relatives of Women with Breast Cancer ........................................................................... 16 3.1 Final Data Coding Scheme ............................................................................ 28 4.1 Sample Characteristics ...................... ;; ........................................................... 32 4.2 Categories of Specific Needs Expressed by FDRs ....................................... .33 4.3 Overall Distribution of Needs Expressed by FDRs ...................................... .41 4.4 Major Categories ofNeeds Expressed by FDRs ........................................... .41 4.5 Distribution ofNeeds by Key Demographic Variables ................................ .43 X

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CHAPTER 1 PROBLEM STATEMENT This research examines the psychosocial and informational needs of the mothers, sisters, and daughters of women diagnosed with breast cancer. Results of a descriptive data analysis using both qualitative and quantitative methods are presented. The most important risk factor for breast cancer is a positive family history in at least one, first-degree relative (FDR) (Esplen, Toner, Hunter, Glendon, Butler, & Field, 1998). The relative risk of developing breast cancer increases by twoto three fold if one family member has breast cancer, and can increase by five-fold if the breast cancer is bilateral. The lifetime risk of developing breast cancer can be as high as 50% among women with two family members with premenopausal breast cancer (American Breast Cancer Foundation, 1998). A recent surge has occurred in medical and scientific evidence of family history as a risk factor for breast cancer. This increase in knowledge is due, in part, to advances in molecular research and the discovery of the breast-ovarian susceptibility genes, BRCA 1 and BRCA2. There is a paucity of literature related to the specific psychosocial concerns and needs of close relatives of cancer patients. This kind of research is especially salient in cases, such as breast cancer, where the diagnosis may indicate increased 1

PAGE 12

heritable risk. To date, investigation of the psychosocial impact on women with a family history of breast cancer has been limited to a few studies, primarily of wolllen in BRCAI and BRCA2 families, and remains largely uncharted territory. Understanding the psychosocial impact of breast cancer on close female relatives has potential for cost-effective interventions, which promote cancer screening behaviors and thereby save lives, reduce suffering, and lessen financial strain on the health care system. To examine the psychosocial concerns of female, first-degree relatives of women with breast cancer, an ancillary data analysis using both quantitative and qualitative methods was conducted. Specifically, the goal of this analysis is to evaluate how women characterize their own psychosocial and informational needs related to having a sister, mother, or daughter diagnosed with breast cancer in the past year. This paper presents a theoretical framework related to the personal, subjective experience of illness as evidenced in illness narratives, explanatory model paradigms, and the family social network, to better understand the impact of breast cancer diagnosed in a female family member. Results of the analysis includes examples of women's self-described, personal experiences and concerns, as stated in their narrative responses. Recommendations will be made for health care practice, and implications for future research will be discussed. 2

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CHAPTER2 THEORETICAL LITERATURE The current era, one that might be called the "psychologizing of medicine," began with a growing realization of the limitations of the biological approach to understanding the most prevalent sources of morbidity and mortality (Ahmed, Kolker, & Coehlo, 1979). The biomedical view of disease, which mainly focuses on the biological aspects of disease and bodily dysfunction, has given way to a more complex model, the biopsychosocial model of health. This model, advanced by George Engel (1977, 1980), is based on a complete view of health and illness that takes into account not only the biology .of the person, but also the person's psychology and sociology. The model hypothesizes that in order to understand a person's state of illness and how to treat it, one must consider how psychological, sociological, behavioral, and cultural factors play a role along with biological factors in all facets of illness and illness behavior (Bloom, 1988). It is, in fact, now widely accepted throughout the medical and lay communities that social, psychological, and physiological processes modulate one another in health and illness (Engle, 1980). 3

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Personal Meaning of Illness The concepts of "disease" and "illness" have long been used interchangeably by lay persons and health professionals alike. Yet, the concepts of disease and illness can be clearly seen as two distinct paradigms when viewed through the lens of a physician trained in the Western biomedical model, compared to that of a medical anthropologist or social scientist. "Disease" is conceptualized in the narrow, biological terms of the biomedical model as an alteration in biological structure or functioning (Kleinman, 1988). Disease is diagnosed and labeled by physicians and mentioned in scientific terms in medical texts. Disease refers to the culture of biomedicine; its meaning assessed by members of the health care team (Brown & Corbett, 1995). Thus, disease is what practitioners have been trained to "see" through the theoretical lens of their particular form of practice. Treatment intended solely to improve disease processes, however, may be contrary to, and confound, the patient's and family's assessments of care. "Illness," on the other hand, refers to the innately human experience of symptoms and suffering, viewed and understood in common-sense ways by persons within a social group. The experience of illness is culturally shaped, influenced by the patterned ways in which persons learn to think, act, and mirror the social structure oftheir life worlds. Viewed from this perspective, there are socially acceptable and 4

PAGE 15

unacceptable ways of being ill. Illness behavior is based on the patient's or family members' judgments of how best to cope with the distress and practical problems in daily living caused by the health threat. Thus, illness is the lived experience of patients and their families as they encounter life-threatening or serious health threats, from their personal and subjective point of view. Within qualitative medical research there has been a recent surge in narrative accounts of illness and in methods of narrative and thematic analysis (e.g., Good, Munakata, Kobayashi, Mattingly, & Good, 1994; Hyden, 1997; Steffen, 1997). Illness narratives emerge from the patient's and family's interpretations of the different meanings of illness within personal, social and cultural contexts. The illness narrative is a story the patient tells, and significant others retell, to give coherence to the events and long-term course of suffering. These model texts shape and even create experience (Kleinman, 1988), and provide an understanding of the experience of illness through the rich descriptions they impart and the wealth of detail that emerges. Illness narratives reveal people's explanatory models, or constellations of beliefs and behaviors that guide individuals' responses when faced with serious or life-threatening illness. These internalized models help people make sense of and guide their actions. Explanatory models, comprised of information, biases, assumptions, and explanations learned and reinforced by the social and cultural 5

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influences over one's lifetime (Brown & Corbett, 1995), are notions that patients, families, and practitioners have about a specific illness episode. Meaning is created in the context of serious illness in the same way that it is created in other personal and cultural dilemmas, as contingent on the availability and quality of social relationships and tangible resources. Meaning ascribed to illness can thereby result in different outcomes. For example, one person may experience illness as something negative and self-defeating, while another may discover in the illness experience the opportunity for growth and a deeper appreciation of life. The family social network is the foundation from which most individuals' belief systems and values originate, develop, and change over time. To better understand personal meaning of illness requires consideration ofhow the family social network contributes to the individual's explanatory model of the illness expenence. The Family Social Network and Illness Social scientists throughout the twentieth century have used social network analyses to understand how the complexities of social ties and networks affect health and health care (Hall & Wellman, 1985). The social network analytic model, for example, focuses on the characteristics of the patterns of ties between actors in a 6

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social system, rather than on characteristics of the individuals themselves. Robinson (1995) has noted, however, that initial definitions in Western nursing practice about the individual and family have been framed in terms of the individual (with or without family as context), rather than in terms of the family network as client or unit of care. These definitions have proven to be limiting, since they fail to depict the intricate relationships and exchanges between individuals and their families. More recent investigations have focused on the importance of seeing the family as a system, in which the person is viewed as both an individual and a family member, rather than the individual as independent ofthe family (Stetz, 1998, p.157). From this perspective, the family is considered a special type of social network, in which the close interpersonal relationships among its members may be affected profoundly when confronted by a serious or life-threatening illness in one of its members. A growing interest in the role of the family in health care has occurred largely because of two increasing realizations: 1) the importance of the family in medical management, and 2) the use of family-based alternatives as the site for provision of medical care, particularly in the area of chronic illness (Bloom, 1988). As the family has become increasingly involved in every aspect of medical care (prevention, treatment, management and rehabilitation), an increasing degree of collaboration between medical care and family systems has become necessary (Doherty, 1985; 7

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Molumphy & Sporakowski, 1984; Stetz, Lewis, & Primomo, 1986). There is no question that the severe illness of a family member constitutes a stressful life event for the patient, and usually for family members as well, particularly if there is little likelihood for a full recovery. Doherty and McCubbin (1985) have identified six ways in which the family plays a role in the health of its members: 1. Family-related stressful life events and factors which precipitate illness 2. Health promotion and risk reduction 3. Family-based health and illness appraisals 4. Family response to acute illness 5. Family role in help seeking 6. Family adaptation to illness. A possible link between social relationships and health has been proposed by Thoits (1982): that role relationships provide a set of identities, a source of positive self-evaluation, and the basis for a sense of control and mastery. Within the family network, individuals enact roles and carry out responsibilities. These roles, which are learned and shaped by many social forces, give meaning and purpose to one's life and foster a sense of belonging and contribution. Health is enhanced through family role involvement, hence reducing the likelihood that profound anxiety and despair will be experienced. This hypothesis suggests that within the family social network, role relationships and social support may be key factors in the family's adaptation to serious or life-threatening illness. 8

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The Family Social Network and Cancer Confronting a cancer diagnosis requires facing an abrupt, unfamiliar, and frightening situation. A significant body of research over the past decade (primarily from the nursing literature) demonstrates the needs of family caregivers and factors that contribute to adverse outcomes for relatives of cancer patients (Yates, 1999; Twigg & Atkin, 1994; Swanson, Jensen, Specht, Johnson, Maas, & Saylor, 1997). Most commonly, the reported concerns and needs of household family caregivers relate to information about the disease and treatment, maintenance of household functioning, psychological and spiritual support, access to legal or financial advice, and availability of respite care (Mor, Allen, Siegel, & Houts, 1992; Braithwaite, 1992; Kristjanson & Ashcroft, 1994; Laizner, Yost, Berg, & McCorkle, 1993; Sales, Schultz, & Biegel, 1992). The family caregiver's cancer experience has often been described as burdensome and stressful, due to its pervasive impact on multiple dimensions of the family member's life. Such burden or strain is seen to arise from numerous sources, including direct care and physical strain, managing uncertainty, worry, tension, and emotional adjustment, role conflict, economic burden, work adjustments, and sleep disturbances (Yates, 1999; Steel & Fitch, 1996; Longman, Atwood, Sherman, Benedict, & Shang, 1992). 9

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Two general types of moderating factors underlie the process of adaptation to cancer as a stressful life event: personal resources and social resources (Bloom, 1988). Personal resources used to cope with the stresses of illness include: information seeking, direct action, inhibition of action, intrapsychic processes (denial, avoidance, rationalization), and turning to others (seeking support). Social resources used to cope with illness include family members, friends, coworkers, and others who lend emotional, psychological, moral, and spiritual support to the seriously ill person and his/her relatives. Information and social support, in particular, can serve as buffers which mitigate the stress and other negative effects of cancer for persons with cancer and their relatives. Informational Needs of Cancer Patients and Their Families There is evidence from the literature that cancer patients and their families need concrete information and practical advice to understand events across the cancer trajectory and adjust to the cancer diagnosis and its treatment. Studies which have investigated the most important domains of information, as judged by patients and their relatives, reveal that basic knowledge about cancer disease and its treatment are frequently reported areas of specific interest (Love, Wolter, & Hoopes, 1985; Brandt, 1991; Carlsson & Strang, 1997; Carlsson, Strang, & Nygren, 1999). Key issues 10

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include: information about the diagnosis and its implications; the treatment plan, goals, and possible treatment side-effects (short-term and long-term); self-care; and heredity related to cancer. Information seeking, recognized as a significant coping strategy in adjustment to cancer in a family member (e.g., Weisman & Sobel, 1979; Worden & Weisman, 1984), provides individuals with a tool with buffering effects to better cope with a potentially life-threatening situation. Tringali (1986) reported that information needs are more important to family members of cancer patients than are psychological needs. A recent review of the literature on information, education, and communication needs of cancer patients and their families demonstrates that information should be tailored to meet patients' and their relatives' educational background, cultural orientation, and general level of comprehension, and as the informational needs of patients and family members change throughout the course of care, these needs should be reassessed periodically (Harris, 1998). Social Support Needs of Cancer Patients and Their Families Although the exact nature and means of measuring the concept of social support are still debated, the literature has given considerable attention to social support and its role as a buffer to stressful life events, such as cancer. For example, Cobb (1976) perceived social support to be a function of one or more of the following 11

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three classes of information: 1) information leading a person to believe (s)he is cared for and loved; 2) information leading a person to believe (s)he is esteemed and valued; and 3) information leading a person to believe (s)he belongs to a network of communication and mutual belonging. Weisman and Worden (1976-77) demonstrated that strong interpersonal support facilitated successful coping behaviors of newly diagnosed cancer patients, and was therefore regarded as a psychosocial asset. Murawski, Penman & Schmitt (1978) referred to social support as a situation in which there exist strong interpersonal ties to people, upon whom one can depend for emotional support, help, and reassurance in times of need. Northouse (1988) demonstrated that breast cancer patients and their husbands who reported higher levels of social support reported fewer adjustment difficulties post-surgery. These findings have implications for clinical practice: for instance, practitioners might better be able identify and address distress related to the diagnosis of breast cancer in a female family member, and assist both the patient and her relatives in accessing resources that meet their support needs. 12

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The Family Social Network and Breast Cancer The diagnosis of breast cancer in a female family member can impact both the patient and her family in many ways. The psychological impact of breast cancer has been shown to vary among diagnosed women, depending on the affected woman's age, personality, life experience, social and familial relationships, psychological and psychiatric history, stage of disease, and treatments given (Daune, 1995; Marcus, Garrett, Cella, Wenzel, Brady, Crane, McClatchey, Kluhsman, & PateWillig, 1998; Wenzel, Fairclough, Brady, Cella, Garrett, Kluhsman, & Marcus, in press). Similarly, the female, FDR's identity and sense of self, as biologically, socially, and/or spiritually connected with her diagnosed sister, mother, or daughter may be central to her own subjective experience and responses to the illness, including her subsequent health behaviors. It is established in the literature that a family member's adaptation to breast cancer may be characterized by six conceptual themes that characterize all phases of the illness (Lewis, Ellison, & Woods, 1985): powerlessness, ambivalence, interdependence, uncertainty, role restructuring, and resiliency. Powerlessness, or sense of lack of control, is a dominant theme during the initial diagnosis and treatment period. Family members report that they often feel powerless to affect the course of symptoms and suffering. This feeling of powerlessness is accentuated when 13

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family members perceive a lack of effective communication with the physician, or are unable to participate in the treatment plan. Ambivalence towards the patient, including feelings of blame, guilt, and shame, has been shown to be a manifestation of coping with a family member's chronic illness (e.g., Malick, 1979). These responses are often reactions to disruptions in family routines and threats to established relationships, as members of an interdependent system. Feelings of ambivalence often arise after the crises of the diagnostic and treatment periods have passed, and may lead to tension and blame in family members. A breast cancer diagnosis creates extraordinary interdependence for the patient and her family members, including providing physical and emotional support to the patient, taking care of the patient's children, and household tasks. The demands imposed on family members in trying to meet the patient's needs while maintaining a balance in their own lives can result in exhaustion and tension in the family's interpersonal relationships (or may positively affect relationships and strengthen cooperation). Family members also must cope with uncertainty across the entire cancer trajectory: during the diagnostic, treatment, and post-treatment periods, there is uncertainty about the extensiveness and aggressiveness of the disease, the outcome of treatment, and whether the cancer has metastasized and will recur at any given time. Potential heritable risk presents for these close relatives the added uncertainty of not knowing 14

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whether they carry a predisposition, such as a gene mutation, for developing breast cancer. As a chronic illness, breast cancer in a family member can result in role restructuring for other family members as they assume responsibilities and functions of the ill person. Tension and conflict can result as roles are realigned and adjustments are made in the family structure. Finally, resiliency, or the ability to transcend the psychological and emotional stress resulting from a breast cancer diagnosis in a close relative, is an important factor in coping and adjustment for female family members. Studies of First-Degree Relatives of Breast Cancer Patients Investigations of specific psychosocial sequelae among female FDRs of breast cancer patients have only recently begun. This research, summarized in Table 2.1, reveals that FDRs of breast cancer patients experience general psychological and cancer-specific distress, worry about their affected relative, vulnerability related to their personal risk of developing breast cancer, anxiety, and avoidance of breast cancer-related thoughts. Several of these studies show that varying levels of psychological distress impact personal risk perception and subsequent screening behaviors (either positively or negatively) among FDRs of women with breast cancer (Stefanek & Wilcox, 1991; Lerman, Daly, Sands, Balshem, Lustbader, Heggan, Goldstein, James, & Engstrom, 1993; McCaul, Schroeder, & Reid, 1996). 15

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Studies Reporting Psychosocial Sequelae Relatives of Women with Breast Cancer Stefanek FDRs of index age 35+ Telephone Worry about developing breast & Wilcox, (n=125) Interview cancer positively related to 1991 mammography use and BSE competence Poor compliance in BSE and utilization of Kash et FDRs of index cases mean age = Structured Psychological distress consistent a!., 1992 44 (n=217) Questionnaire with need for counseling High anxiety negatively related to CBE and BSE Lerman FDRs of index cases, age 35-79 Telephone Breast cancer-related intrusive Daly& (n=l40) Interview thoughts and worries negatively Sands, associated with mammography 1993 adherence Hughes et FDRs of index cases age 35+ Telephone Concerns about personal risk of a!., 1996 (n=336) Interview breast cancer Worries about affected relative A voidance of breast cancerrelated and Lloyd et Breast cancer genetic counselees Face-to-Face Breast cancer-specific distress a!., 1996 (FDRs) and controls (n=124) Interview despite clinic attendance (U.K. study) Inaccurate perception of breast cancer risk Increased risk not predictive of McCaul et Women with/without a family Various Women with famil:z: histO!Y of breast a!., 1996 history of breast cancer Methods (n>20,000) Were more likelyto have been (Meta-analysis of>50 studies) screened (18/1 9 studies) Greater worry positively related to Audrain et FDRs of index cases (b r east Structured Moderate, general distress a!., 1998 and/or ovarian cancer), age 18+ Telephone Heightened breast cancer risk (n=256) Interview perceptions - Low perceptions of control over breast cancer Gil bar, Women with/ without a family Structured Women with famil:z: histo!Y ofbreast 1998 history of breast cancer (n=235) Questionnaire cancer had: (Israel study) More symptoms of distress 16

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TABLE 2.1 (Cont.) Gilbar & Daughters. of women who had Structured Daughters of women with breast cancer: Borovik, had breast cancer (n=45); Questionnaire Ranked lower on sense of 1998 Women with no family history of coherence breast cancer (n=51) (Israel Were more actively involved in the study) medical setting Requested more medical information McCaul et Women with family history of Structured Women with family histO[Y of breast al., 1998 breast cancer (n=65); Questionnaire cancer had: Women without a family history Greater worry and feelings of of breast cancer (n=70) personal vulnerability over time Worry about breast cancer modestly and positively related to frequency of screening behaviors Schwartz FDRs of index cases (n=341) Telephone General distress et al., & Cancer-specific distress 1998 Face-to-Face Intrusive thoughts and avoidance Interviews behaviors Zakowski Women with/ without a family Telephone Women with family histO[Y of breast et al., history of breast cancer (n=89) Interview cancer had: 1998 Higher levels of intrusive thoughts, avoidance, and perceived lifetime risk for breast cancer Another study by Kash, Holland, Halper, & Miller (1992) found that more than 27% of FDRs had a level of psychological distress consistent with the need for counseling. Women who had more psychological distress reported more barriers to screening, fewer social supports, and low social desirability. In addition, higher anxiety was directly related to poor attendance at a clinical breast examination and poor adherence to monthly breast self-examination. 17

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Cultural factors have also been shown as factors related to the psychosocial impact on FDRs of breast cancer in a close female relative. Hughes, Lerman and Lustbader (1996) found cultural differences to affect women's perceptions about breast cancer and screening for the disease. In comparison with white women, African American women had significantly greater concerns about their personal risk of breast cancer, more worries about their affected relative, and scored significantly higher on a measure of avoidance of breast cancer-related thoughts and feelings. Research on psychosocial sequelae specific to the FDR's relationship to the family member diagnosed with breast cancer is particularly scarce. One recent investigation by Gilbar and Borovik (1998) found that daughters ofwomen with breast cancer had a lower sense of coherence, were more actively involved in the medical setting, and requested more medical information than women whose mothers did not have breast cancer. It is important to note that these results were based on a small sample size of 45 FDRs, compared with 51 women without a family history of breast cancer, which limits generalizability of results. The theoretical background above provides insight for understanding the personal meaningfulness and psychosocial impact of having a mother, sister, or daughter diagnosed with breast cancer. Against this backdrop, the small but growing body of research specific to FDRs of women with breast cancer underscores the 18

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importance of further examining their psychosocial and informational needs. The current study seeks to advance this body of knowledge. In addressing FDRs' psychosocial and informational needs, women may be empowered with the knowledge and resources to provide greater support for their close female relative with breast cancer, and also to optimize their own health status through vigilant, timely breast cancer screening behaviors, and related health promotion practices. 19

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CHAPTER3 METHODS Study Design A descriptive, cross-sectional data analysis was conducted to examine the psychosocial and infonnational needs reported by the female FDRs of women diagnosed with breast cancer in the past year. The data represent subjects' responses to the single, open-ended question within a structured, baseline telephone interview, prior to randomization of subjects. The analysis utilizes both qualitative and quantitative analytic techniques. Study Setting The data were collected from May 1997February 1999, as part of two large, nationwide, randomized trials, which tested a comparable telephone-based counseling intervention to promote cancer screening among the FDRs ofbreast and colorectal cancer patients (Marcus, Ahnen, Cutter, Calonge, Russell, Sedlacek, Wood, Manchester, Fox, McCaskill-Stevens, Fairclough, Hines, Wenzel, & Osborn, 1999). In these studies, families (rather than individuals), including the diagnosed family member and her age-eligible, female FDRs, were randomized to either receive a telephone counseling intervention, or to the control ann (no intervention). In the 20

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breast cancer families study, index cases who had been diagnosed with breast cancer in the past year were identified through hospital tumor registries or clinic lists in over 15 major medical institutions throughout the United States. In an interview with professional interviewers of the ComputerAssisted Telephone Interviewing ( CA TI) Unit at the AMC Cancer Research Center in Denver, CO, participating index cases gave permission to contact their female FDRs (age 40+ years). The data analyzed in the current, ancillary study were subsequently collected in a baseline telephone interview with these female FDRs. Subjects FDRs meeting the following eligibility criteria were enrolled into the original, randomized breast cancer families study: females, 40+ years of age, having a mother, sister, or daughter diagnosed with breast cancer in the past year the index case gave permission for the researchers to contact the FDR the FDR was already aware that the index case had been diagnosed with breast cancer the FDR gave verbal and/or written consent to participate the FDR is a resident of the United States the FDR speaks English. 21

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Enrollment Procedures A letter of invitation, study brochure, and Participation Form, on which respondents could indicate willingness to participate or decline the study, were mailed to identified index cases. In a telephone interview with the index case, a family history of cancer, defined as the total number of the index case's firstand second degree relatives with any type of cancer, was obtained. A pre-programmed algorithm in the computerized interview calculated eligibility of the index case, in relation to family cancer history. As determined by the algorithm, index cases having exceptionally strong family cancer histories were excluded from the study to prevent any related bias in the FDR cohort. These index cases received a referral to a specialized, hereditary cancer clinic. Eligible index cases provided consent to contact their female FDRs, as well as a list of the FDRs and their contact information. An invitation packet similar to that received by the index case was subsequently mailed to FDRs. All Institutional Review Boards of participating institutions approved combined consent and written Participation Form as constituting adequate informed consent. Data Collection The data for the current analysis represent aggregate responses to a single, open-ended question within an otherwise structured, baseline interview instrument 22

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(Appendix, p. 81 ). The open-ended question was stated as follows: I'd like to ask ypu to share any ideas you might have about what kinds of support, information, or programs would be useful for close relatives of breast cancer patients. For instance, is there anything that people in health care or health education could have offered you that would have been helpful? This question was selected to elicit women's perceived psychosocial and informational needs related to the diagnosis of breast cancer in their mother, sister, or daughter. The entire interview was conducted by telephone, audiotaped, and took 30 minutes on average to complete. Interviewers entered the FDR' s verbatim or paraphrased response into the computer database program. Data Analysis The data set of responses to the open-ended question was transferred from the original randomized study database to a Microsoft Word for Windows 95 file. Each record in this file contained the subject's study number, interview date and start time, interviewer name, subject's relation to the index case, and response to the openended question. This file was exported to a qualitative data analysis software program and merged with selected demographic and key quantitative variables for analysis. Following completion of qualitative analysis, quantitative analysis was conducted. 23

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Coding Procedures A multiphase process was used to analyze the transcribed data, based on the content analytic methods described by Krippendorf (1980), Strauss and Corbin (1990), and Markoff, Shapiro & Weitman (1974). Ms. Kluhsman first listened to ten audiotaped interviews in their entirety to understand the full contextual framework of the open-ended question. Transcripts of the responses to the open-ended question were then read multiple times. Most responses were brief, and many contained multiple concepts. The unit of analysis was determined as the individual FDR's response to the question, operationally handled in the written paragraph. The "editing analysis style" (Crabtree & Miller, 1992) was used to group data into inductively derived categories, then to develop a coding scheme for the data set. As shown in Figure 3.1 below, the editing analysis style involves making observations during a systematic reading of the text and organizing these observations into categories or codes, which are then re-read for further interpretation. 24

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FIGURE 3.1: Editing Analysis Style* (Editor) Report "iitilllt---TlT Identify Units Intetretively Determine Connections crabtree & Miller, 1992 During the multiple readings of the printed data set, predominant psychosocial and informational needs reported by FDRs were highlighted, or "flagged." Eighteen separate, thematic categories, based on the underlying, implicit meaning in the content of the text, emerged from these "flagged" data (Iteration 1). Similar or related responses were then grouped into general themes or content areas (Iteration 2). These categorical constructs were refined and operationalized, from which an initial coding scheme was developed (Iteration 3). The initial coding scheme included five categories of informational items, one category of physician corntnunication issues, and two categories of support (for FDR and patient). Dr. Lucinda Bryant provided independent expert review of the data set. Blinded to the initial coding scheme, Dr. 25

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Bryant conducted content analysis of the data set. In consultation with Dr. Corbett, comparisons of Dr. Bryant's review and observations confirmed content validity of the initial coding scheme and the appropriateness of using the prescribed coding techniques. Dr. Alfred Marcus, Principal Investigator ofthe original, randomized study, reviewed each iteration in the development of the coding scheme. Two Master's-level health researchers assisted Ms. Kluhsman in coding the data. Compound and multiple sentences were analyzed into their component parts and coded as multiple units. All units of analysis were coded; no unit was discarded. Thus, each subject's response paragraph could contain multiple coded concepts, as shown in the example in Figure 3 .2. 01 ariable names related to thematic categories are shown in bold type in the given example, whereas number codes representing these variables were actually used by the coding team in coding the narrative responses.) FIGURE 3.2: Example of Data Coding "I don't know. My mother is still in a 'haze.' The support group made her more depressed Maybe [EMOTPAT)* some one-on-one would be better in some cases. The doctors could have been more informative before [MEDFDR)** the surgery. More information for the family would have helped. No one confronted us with what was going on, especially since she was "in and out in 24 hours" after the surgery We didn t know what to do. [EMOTOTHR)*** We need for families to know how to help the patient, regardless of the patient's age." Emotional Support for Patient Medical Information for Patient Emotional Support for FDR to Help Patient 26

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The data coding team met four times to review and compare their independent coding of a sample of responses. Disagreements about any aspects of the coding were resolved through discussions. Recoding decisions were made by consensus (when all three coders agreed), majority vote (when two coders disagreed), or Ms. Kluhsman (when all three coders disagreed, without subsequent agreement between at least two coders). This process resulted in new decision rules about the inclusion or exclusion of a unit in a category, refined definitions of existing thematic categories, and the identification and definition of two new categories (Mammography Financial Assistance; Emotional/Other Support to Help Patient) (Iteration 4). Intercoder reliability was calculated at each of the four coding review sessions using Crabtree and Miller's (1992) formula. Reliability was initially 53% and 62% for the first two rating periods, and rose to 92% and 98%, respectively, for the second two rating periods following discussions and consensus decisions. In permitting continuous refmement of the coding scheme, the content analysis editing style thus greatly enhanced intercoder reliability. The final coding scheme, as shown in Table 3.1, was used to code and to recode data prior to further analysis. 27

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TABLE3.1: Final Data Coding Scheme X '" ... : i . .. ''\ .:.J :J:,.:;r < .. ,, > : .. .. }': . > .-: .. ;,; '" ',,. __ -: : '" k .._ .. ,; ::: :c ., .. .: Health Promotion Prevention; Screening; Self-Care; Alternative Therapies Programs/Classes Programs; Classes; Seminars Print Material Literature, Brochures, Pamphlets, Books, etc. Video/ Multimedia Video; TV; Newspaper; Magazines; Computer/ INFORMATION Internet Risk Information Statistics; Genetic Counseling/ Testing; "Causative" Agents Medical Information (for Patient) Cancer-Related Medical Information Medical Information (forFDR) General or Cancer-Specific Medical Information MD Accessibility, MDI health team informs, listens, and/or Communication, Sensitivity sensitive to FDR Emotional Support (for Patient) Peer Support (talk wlother survivors); Support Group; Professional Support; Family/Friends; Community; Church SUPPORT Peer Support (talk wlother FDRs); Support Emotional Support (for FDR) Group; Professional Support; Family/Friends; Community; Church Emotional Support (forFDR to Information, Support, Advice, for FDR to Help help Patient) Patient Mammography Financial Freel Low-Cost Mammography Assistance OTHER Other Need Needs Not Fitting Other Categories; Ambiguous Responses NO NEEDS No Needs Expressed Had Sufficient Resources; Did Not Feel Need Qualitative Analysis Using NUD*IST After hard copy coding was completed, qualitative analysis was conducted using the Qualitative Solutions and Research Non-Numerical Unstructured Data Indexing Searching and Theorizing (QSR NUD*IST) Revision 4 software program. The QSR NUD*IST program is used by social science and health researchers in over 28

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forty countries (Richards, 1997). The program allows data coding processes in an index system and searching text or patterns of coding. The same categories as used for the hard copy coding were entered into the QSR NUD*IST index system. Again using the paragraph of the individual FDR's response to the question as the unit of analysis, text searches of words and phrases were conducted to capture other themes which might have been overlooked in the data coding scheme already developed. No new categories emerged. The NUD*IST data file was utilized for text searches, organization, and generating an editable version to extract blocks of text into the discussion of qualitative analysis results. Quantitative Analysis Using SPSS The coded responses to the open-ended question were entered into SPSS for Windows Release 7.0 for quantitative analysis, along with selected demographic and key variables (Relation of FDR to Patient, Time Since Learning of Diagnosis of Patient), imported from the full, baseline interview data set. The use ofSPSS allowed the generation of distributions, descriptive statistics, tabulated reports, and hypothesis testing. Preliminary analyses were conducted on all finely defined categories of needs (e.g., Health Promotion), as listed in Table 3.1. These categories were then collapsed into three major categories for final analysis: Information, Support, and 29

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Other. Among those FDRs who did not respond, "Don't Know," subjects where classified as reporting Any Need or No Needs. Frequency distributions were run to determine subject characteristics, out-of-range values, and data entry errors. Associations between demographic characteristics and reporting needs were tested using a chi-square test of independence for unordered variables (e.g., Race, Relation ofFDR to Patient), and tested using the Mantel-Haenszel chi-square test for ordered variables (e.g., Education, Income). Dr. Diane Fairclough, Senior Biostatistician, provided expert review of the quantitative analysis procedures and interpretation of results. 30

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CHAPTER4 RESULTS Characteristics of the Sample A total of 1,429 female FDRs were referred for participation in the study by their female relative with breast cancer. OfFDRs referred, 1,081 (76%) completed the baseline interview; 149 (1 0%) refused; 11 0 (8%) were unable to be and 35 (2%) were ineligible (due to age, cancer history, etc.). Another 52 FDRs (4%) did not complete the interview because they prematurely ended the interview and could not again be reached, or contact was not attempted because the study closed. As indicated in Table 4.1, FDRs enrolled in the study were largely non Hispanic White (91 %), and married (74%). The mean age of participants was 54 years (range 40-75 years). About one-third of participants had a high school education, one-third had some trade school or college, and another third were college graduates or had a post-college education. Over half ofFDRs in the study were sisters ofwomen diagnosed with breast cancer, one-third were daughters, and 12% were mothers. The mean time since FDRs learned of the index case's diagnosis was 10 months (range 1-39 months). Family history of cancer, defined as the number of FDRs or second-degree relatives (SDRs) who ever had any type of cancer, for the majority ofFDRs (86%) was one affected relative (the index case). 31

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TABLE4.1: Sample Characteristics N=1081 ;"'' t!Cna JC!il.00 ''""'12 ,,,,,.,, Relation of FDR to Patient Sister 636 58 7 Daughter 319 29 5 Mother 128 11.8 Age 40-49 506 46.8 50-59 289 26.7 60-69 194 17.9 70+ 92 8.5 Race!Ethnici!Y White 983 90.9 African American 58 5.4 Hispanic 17 1.6 Other 23 2.1 Marital Status Married 795 73. 5 Other 287 26.5 Education
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Results of Qualitative Analysis: Themes in Women's Responses Results of the qualitative analysis provide the rich details, contexts and plausible explanations of the concrete quantitative results, which follow. Overall, qualitative data analysis results reveal a diverse range of informational and support needs among FDRs. Table 4.21ists, in order of prevalence, the specific types of needs reported by FDRs, with corresponding sample statements from FDRs' responses to the open-ended question. TABLE4.2: Categories of Specific Needs Expressed by FDRs N=554 Type of Need n % Sample Response No Needs Expressed 529 41.9 I did not feel a need for it, but it was available. Medical Information 205 37.0 Information on fibroid tumors; effects of estrogen--clear up (for FDR) the confusion on the effects of drugs on breast cancer. Emotional Support 175 31.6 Support groups for relatives to talk to who were in the same (forFDR) situation, to see how they deal with it. Health Promotion Information 113 20.4 Programs teaching people to take responsiblity for life through diet, meditation, communication (like Dr. Dean Ornish's heart disease program). Physician Communication, 74 13.4 It would be nice to set an appointment to meet the oncologist Accessibility, Sensitivity or physician, open to anyone in the family. Risk Information 63 11.4 Information of your risks, for the family, at least the daughters. Print Material 62 11.2 Reading material about cancer, what it is, how it starts, forms of treatment, risks and benefits of different treatments. Programs,Ciasses, Seminars 54 9.7 I don't know enough about the programs that are available. Emotional Support 51 9.2 Support groups very important for patients (church or (for Patient) otherwise). Emotional Support (forFDR 35 6.3 I would like to know more about how to help her more. to Better Help Patient) Other Need 29 5.2 Discounts on health insurance. Video/ Multimedia 21 3.8 Video on treatments for cancer; programs on TV. Medical Information (for 21 3.8 More information from medical staff for my sister, because Patient) she had to research it herself. Mammography Financial 15 2.7 All females in the family should be able to have Assistance mammograms for free because they cannot afford to be screened and the cancer has been found in the family. 33

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These results indicate that FDRs express substantial, diverse medical information needs and concerns related to breast cancer in a close female relative, as well as substantial need for emotional support. FDRs also report the need for information related to health promotion and wellness. Specific modes of delivering information and emotional support are also indicated. No Needs Results of the analysis showed that 42% of the women interviewed expressed no additional psychosocial or informational needs. The majority of these FDRs stated that they had resources available to them, including information and/or support provided by health professionals, family, friends, and community groups. Most of these FDRs reported using one or more available resources, while others perceived having no needs at all. My father is in medicine. I got lots of information from the American Cancer Society. There are many cancers in the family. My mother [with breast cancer J also gave me information. It seems it hasn't impacted us all that much. My mother [with breast cancer] is over 80, and therefore I don'tfeell'm as affected. It's more important for ones with younger relatives. 34

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Informational Needs Medical Information. Respondents reported a wide range of medical informational needs related to breast cancer, including: information about the patient's diagnosis and treatment (explained in layman's terms); the "causes" of breast cancer; available treatment options; and expected treatment side-effects. I wish we could have sat down and discussed exactly what was going on, and saw what procedures were going to be done, and what options were available. More education about her case for future use, if the family has to deal with the cancer personally in the future. More details in the information, not so general. I could have [used some help to} understand the terms that were used; to have more information on meeting with someone to help with the terminology. My sister's physician is unable to deal with the problem: she is so itchy [now, since the termination of radiation]. I live out in a small community. I can't read. I know nothing about cancer since I do not read. If I could sit with someone that can speak in words that I could understand. Health Promotion. Information related to health promotion and wellness was a prominent theme for FDRs. Specific areas of health promotion needs reported include: breast cancer screening and prevention; self-care activities; and use of alternative therapies. I think that when my sister was diagnosed, I wanted to have someone to ask how often I should have a mammogram. 35

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I would like to know about breast self-exam. I do my own, but I don't know what I'm feeling. I wish I had a model that I could take home and know what the difference in the feeling is. I'm very confused I'm 49 and I have been doing it every month, and I still don't know what I'm feeling. I can do the exams, but it might slip through and who knows whose fault it is. There's not enough support in the medical profession, because I do not know how to take care of myself, because I am not in the medical profession. We're really into nutrition. I would like to have had information regarding what kinds of food to avoid to reduce the risks of cancer. Health care providers should know more about that too, as well as information provided as a supplement to care for cancer. Something for daughters. Stress diet and exercise lists of 'found to be helpful, and why they are helpful. Programs teaching people to take responsibility for your own life through diet, meditation, communication, like Dr. Dean Ornish 's heart disease program. Physician Communication. Availability, and Sensitivity. FDRs mentioned feeling that the family is excluded, in terms of lacking access to health professionals to obtain information, to have their questions answered, and more sensitivity and compassion extended by the patient's medical team to family members. They never called any one of us to talk to us about her cancer. I wish I had more information and more access to her doctors. She's had strokes and has bad short-term memory, so I didn't know what she needed. More communication between the doctor and the family who is caring for my mother. 36

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They could have offered us an explanation why they didn't check my mother's nodes. I didn't like the explanation that, 'We don't chop up old people. Provide a better explanation to the patient and family about treatment and how it has changed over the years, especially when the family has had a previous bad experience with it. This would help calm the patient's andfamily's nerves. Doctor communication is extremely difficult. The doctors' answers are too broad You're made to feel like just a number, not a family member. This was hard, because I was so concerned for my mother. I wish that I had communication with the doctor, even if you are far away. Yes, I think at the time of the diagnosis, it was very cold and factual. I wanted to be with my mom. Regardless of the diagnosis, I was not honored that request. More compassion. Personal Risk for Breast Cancer. FDRs were concerned about their personal and potential hereditary risk for developing breast cancer, the risk of breast cancer for their other female family members, and the effects oflifestyle, diet, hormones and other possible causative or preventive agents on risk. People should know about their family background and how important that it is a possibility of increased risk. When they describe the type of cancer that your relative has, it is good to know if that type is hereditary, the chances of survival, how they long they thought it had been growing, all of the ramifications. So that if you do what you were supposed to do, it would it help. Is it quantifiable? More about diet. And whether [the diagnosis in the family member J will increase or decrease your chances of getting breast cancer. I wish I knew more about the history of where my sister's cancer came from and to have this in afilefor my daughter. 37

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My doctor said a genetic test is not a good idea. I would like to have that information. My daughters would be tested, and they're only 20 and 25. Medical Myths about Breast Cancer. Although not a defined coding category, myths about breast cancer were mentioned by several women, examples of which are given to emphasize their prevalence and the need for information expressed by these FDRs to help dispel such myths: I always thought that cancer will kill you in no time, but my sister told me that you could have it for years. My sister [with breast cancer] won't fly because of her lymph nodes. Therefore, more information on what they can or can't do--proper information to challenge myths and misconceptions. Print ,Video, Multimedia, Programs, Classes, Seminars. Various concrete forms and modes of information delivery were mentioned by FDRs, including print and multimedia material, programs, classes, seminars and telephone hotlines. More reading materials, and more research pertaining to the situation on hand My mother got information, but the family did not get any. Literature to read up on breast cancer and the percentages of familial types of cancers. What types of things should a woman look for, what about her health care? Video on treatments for cancer. What is known to date about the risks of getting cancer? More than a two-page pamphlet for non-scientific people. Invite the family to the classes that the patient went to. 38

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Emotional Support Needs The need for emotional support related to having a mother, sister, or daughter diagnosed with breast cancer was reported by a substantial number of FDRs. Types of support reported include: support groups, emotional support from medical professionals, improved and more extensive family support, community and church programs, and support for the FDR to better help the family member diagnosed with breast cancer. Something needs to be out there for patients and the family to deal with the emotional part. This would be VERY important. Support groups for relatives to talk to, who were in the same situation to see how they dealt with it. I need a support group. This is very important, especially since I'm so far away. For the patient and the family, a support group to give help and to have someone to talk to. Everyone involved needs to have more information and support in regard to the post-treatment side effects and emotional trauma. I need support, a toll-free hotline to speak with a professional. Support for the FDR to Help Patient. When asked what would have been helpful to women as FDRs, many responded in terms of the patient's needs, with little differentiation between the patient's and FDR's needs. This was particularly true in cases where the FDR expressed the need for support to better help her mother, sister, or daughter with breast cancer. 39

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Well, I have not contacted any group, but I would like to contact a group who will help me to help my sister. I folt like I needed to know what could I do to help my sister. I was concerned that she was in denial, and I didn't know how to help, and I didn't know if her nurses were knowledgeable or not. We're a well-known family from a small town. It was very hard on ALL of us. I don't think [my sister] went through the grieving process yet. I wish there was more information on how to react to the situation as she goes through the process of anger and depression. I have so many questions about breast cancer myself I have questions about myself After she had her surgery, I asked her if she looked at her surgery, and she said, 'No. I have no knowledge about what to say to her. This is good that you are calling me now, because as a family member, maybe someone else could call to talk to me. These narrative responses provide valuable insight into women's experiences in having a close female relative diagnosed with breast cancer. The intricate web of family bonds and interpersonal relationships are evident in these brief but descriptive accounts. The qualitative data analysis clearly demonstrates that FDRs of breast cancer patients have distinct and substantial psychosocial and informational needs. 40

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Results of Quantitative Analysis Distribution of Overall Needs As shown in Table 4.3, more than half ofFDRs (51%) reported some type of psychosocial or informational need, while 42% expressed no .needs, and 7% did not know whether they had any type of need. TABLE 4.3: Overall Distribution of Needs Expressed by FDRs N=1083 N % Any Type of Need 554 51.2 No Needs 454 41.9 Don't Know 72 6.6 Missing 3 .3 Of those who reported any type of need (Table 4.4), a clear majority (76%) said they had need for information, 41% emotional support needs, and 8% reported some other type of need. TABLE 4.4: Major Categories of Needs Expressed by FDRs N=SS4 n % Information 410 74.0 Emotional Support 228 41.2 Other 43 7.8 41

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Distribution ofNeeds by Key Demographic Variables Variables evaluated for association with type of need were age, education, ethnicity, family history of cancer, income, months since FDR learned of the patient's diagnosis, and relation ofFDR to the patient. Results, as presented below in Table 4.5, show associations of key demographic variables with need for information and emotional support. As age increases, expressed need for information is less. As income increases, expressed need for information is greater. As education increases, expressed need for both information and emotional support also is greater. Additionally, the time of most need appears to be 6-9 months since FDRs learn of the breast cancer diagnosis. Logistic regression was used to determine whether these demographic variables are predictive ofFDRs' information or emotional support needs. Results showed that younger age predicts expressed need for information. In addition, more education predicts both expressed need for information and emotional support. 42

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TABLE4.5: Distribution of Needs by Key Demographic Variables N=I009 EMOTIONAL INFORMATION Significanc SUPPORT Significanc Variable n 0/o e n % e (p) (p) 40-49 yrs 222 46.4 107 22.4 50-59 yrs 117 42.7 64 23.4 60-69 yrs 50 29.4 41 24.1 70+ yrs 18 21.4 <0.001 14 16.7 0.614 Education
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Distribution ofNeeds by Relationship to Patient Women's expressed needs also were evaluated, based on FDRs' relation to their close relative with breast cancer. Results show significant differences for FDRs' relation to the patient: 1. Overall, daughters of women with breast cancer expressed the most need for information, followed by sisters, then mothers. 2. Mothers of women with breast cancer expressed the most need for emotional support, followed by daughters, then sisters. Again, the logistic regression procedure was used, with the following result: 1. Being a mother of a daughter with breast cancer is a strong predictor of expressed need for emotional support. 44

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CHAPTERS DISCUSSION The major finding of this study is that the majority ofwomen who have a mother, sister, or daughter diagnosed with breast cancer in the past year report related informational and emotional support needs. The findings support those of previous studies, which demonstrate general psychological and breast cancer-specific distress among FDRs of breast cancer patients (Kash et al., 1992; Lerman, et al., 1993; Lloyd et al., 1996; Audrain, Schwartz, Lerman, Hughes, Peshkin, & Biesecker, 1998; Gilbar, 1998; Schwartz, Lerman, Audrain, Cella, Rimer, Stefanek, Garber, Lin, & Vogel, 1998), worries about the affected relative (Hughes et al., 1996), concerns about personal risk, feelings of vulnerability, and worry about developing breast cancer (Stefanek & Wilcox, 1991; McCaul et al., 1996; Audrain et al., 1998; McCaul et al., 1998). The experiences of FDRs in this sample population are not unlike those of family caregivers of cancer patients, as demonstrated in previous studies. Common concerns and needs of family caregivers in the literature with those of FDRs in this study include: information about the disease and treatment, psychological and spiritual support, and access to financial advice (Moret al., 1992; Braithwaite, 1992; Kristjanson et al., 1994; Laizner et al., 1993; Saleset al., 1992). In addition, the current findings support those in the literature which specifically pertain to the need 45

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for information by family members of cancer patients (Love et al., 1985; Brandt, 1991; Carlsson et al., 1997, 1999). These common informational needs include: basic knowledge of cancer and its treatment, information about the diagnosis and its implications; the treatment plan and goals, possible shortand long-term treatment side-effects, self-care and health promotion, and heredity related to cancer. This study also supports the finding of Tringali (1986) that need for information is stronger than need for emotional support among family members of cancer patients. The finding that daughters of women with breast cancer are the FDRs most likely to report need for informational support (compared to sisters and mothers) is consistent with Gilbar & Borovik (1998), who found daughters (albeit a small sample) to be most in need of medical information. Together, these studies suggest that a daughter, in particular, may seek medical information (as a buffer) to better cope with her mother's illness, or to strengthen her ability to be a primary support person for her mother. Another factor suggested by the thematic responses in the current data is the daughter's role as the "family information gatherer" and key informant to provide information about her mother's diagnosis and treatment to other family members. As daughters constitute the youngest cohort ofFDRs, it is plausible that their information-seeking is related to greater knowledge, access to technology, and 46

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expertise, which stem from educational opportunities not available to their mothers. The finding that 48% of daughters comprise the largest group ofFDRs who report informational needs should not obscure that which shows 40% of sisters and 27% of mothers to also express need for information. Further research is strongly suggested (such as focus groups, followed by a wide-scale needs assessment) to examine the mechanisms of providing appropriate, breast cancer-related information for daughters, sisters, and mothers of women with breast cancer. Mothers, on the other hand, were found as most likely to report need for emotional support. Mothers of adult daughters with breast cancer are thereby not unlike mothers of children with other cancer, who also experience high levels of emotional distress, as clearly demonstrated in the pediatric literature (e.g., Hoekstra Weebers et al., 1998; Speechley & Noh, 1992). Mothers constitute the oldest of the three FDR cohorts in the current study, were less likely than daughters or sisters of women with breast cancer to report informational needs, and older age was shown as predictive of less expressed need for breast cancer-related information. These findings together may suggest that mothers underreport their need for information (and thereby lack the buffering effects of adequate information), or that their greater need for emotional support exists despite access to adequate information related to breast cancer. Assuming that mothers do have adequate information, it is possible 47

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that their social support is limited by the age, higher morbidity, and increasing mortality among their social networks. Further investigation is needed to ascertain whether older women truly have their informational needs met, and if not, what barriers exist to their obtaining such information. The finding that being a mother of a woman with breast cancer is strongly predictive of expressed need for emotional support is, in and of itself, evidence in support of future counseling interventions. Such interventions might utilize baseline measures to assess and subsequently address mothers' emotional distress to facilitate coping, adjustment, and improve future breast screening adherence of these older women. This study also found that the time of most expressed need for emotional support is 6-9 months since FDRs learn of their female relative's breast cancer diagnosis. This time period may or may not represent 6-9 months post-diagnosis. It is reasonable to presume that these time periods coincide, based on the closeness of female, familial relationships and recognized phases of the cancer trajectory. The close relationship or association among most female family members would likely permit the FDR's knowledge of the breast cancer diagnosis soon after its occurrence. The end of the acute phase of the cancer trajectory typically occurs 6-9 months post diagnosis, when most breast cancer patients are finishing chemotherapy and/or radiation treatment and suffer the most intense treatment side-effects, which may 48

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explain FDRS' greater need for emotional support during that time. Nevertheless, caution is urged in the interpretation of this finding. Further research is suggested to determine optimal timing for interventions to address FDRS' emotional support needs. Collectively, the findings of this study support intervening with the sisters, mothers, and daughters of diagnosed breast cancer patients. Providing adequate information and emotional support to FDRs would expand their breast cancer-related awareness and knowledge, promote enhanced adjustment and coping with the relative's diagnosis, and potentially result in improved and more adherent breast cancer screening behaviors among FDRS. Strengths of the Study The use of both quantitative and qualitative methods is a strength of this study, in providing a richer and deeper understanding ofFDRs' experiences than would otherwise be possible. The open-ended question and qualitative analytic techniques allowed the capturing of contextual meaning ofFDRs' reported psychosocial and informational needs, which might have been lost or diminished by use of a standardized scale of measure. Quantitative analysis permitted the use of standardized procedures to statistically examine concepts in the form of distinct 49

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variables, to find correlations of variables in the data subset with psychosocial variables in the larger set of data, and to allow future replication. A second strength ofthe study is the large sample size, which allowed for identification ofmultithematic needs and generalizability of results to the larger population. A third strength of the study is the use of carefully selected qualitative data analysis procedures, based on established methodologies and conducted under expert review of both qualitative and quantitative researchers. Another strength is use of the telephone interview in facilitating the large sample of FDRs to be reached, having most of the strengths of a face-to-face interview, but for about half the cost. Limitations of the Study A limitation of this study is the homogeneous sample of predominantly white, welleducated women with midto upper-range incomes. This occurred despite intense efforts by the original study team to recruit minority and underserved subjects through medical centers having large minority and/or underserved populations. Caution must be exercised in the extrapolation of these findings, with further research suggested to investigate the psychosocial and informational needs of minority and underserved women in families experiencing breast cancer in a female family member. Another contributing factor in the sample being homogeneous was family 50

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cancer history, as the clear majority (86%) have just one affected first-or second degree relative (the index case), largely due to the exclusion of families with exceptionally strong family cancer histories. A second potential limitation is ignoring potential clustering, given that individuals from within the same family groups are included in the study and responses may not be statistically independent. However, the study team checked interclass correlation and found it not to be a problem for the current analysis. The primary limitation is potentially compromised validity, based on ambiguity within the question structure, and the method used to record the data. First, the question did not differentiate between "useful" and "needed" resources, nor between "available" and "unavailable" resources; the data thus reflected all of these conditions. Although these inconsistencies made initial coding of the data cumbersome, the coding team decided early in the coding process to compensate by coding only types of needs in which FDRs reported being deficient. Second, interviewers recorded the data by typing FDRs' responses into a text field of the computerized interview instrument. Interviewers varied in their recording methods, sometimes recording reponses verbatim, other times recording paraphrased responses, given time restraints imposed by the overall length ofthe interview instrument. This variability in data recording may have resulted in lost data or missing context. Attempts were made to minimize this loss during the data collection period through 51

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ongoing interviewer training and supervision, and during the coding process by ongoing use and revision of operationalized definitions of thematic categories, standardization of coding, and intercoder agreement in coding ambiguous responses. Another potential limitation is that the length of the interview may have produced a "fatigue" bias in the data: the open-ended question typically occurred in the last quarter of the 30-minute telephone interview, when respondents may have been tiring. The age eligibility restriction (40+ years) was also a limitation of this study. Inclusion of younger FDRs would strengthen the sample in being more representative of the population and also would provide more complete insight into the psychosocial and informational needs of female FDRs at higher risk for breast cancer, based on family history. 52

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CHAPTER6 IMPLICATIONS The diagnosis of breast cancer is a crisis for the family system. Strong reactions of fear, anger, uncertainty and helplessness are not confined to the woman with breast cancer, but extend to the family members and significant others who are involved in that individual's life. Family members look to each other for assistance in dealing with their problems of stress. Although the nursing, sociological, and psychological literature is replete with statements about the role of family in reducing stress and promoting positive physical and emotional adjustment to chronic illnesses, little attention has been devoted to the needs of the female, first-degree relatives of women with breast cancer. This study has implications for clinical practice. It is important that health professionals attend to female FDRs' concerns related to the patient's breast cancer experience, in order to fully understand and address both the patient's and FDRs' needs. Patients and families, in tum, can make more useful judgments concerning medical decisions and health-related behavior. A written questionnaire to be completed by FDRs and discussed with the physician during a scheduled visit might serve as a cost-effective and efficient tool for practitioners to understand and address their needs. Practitioners might provide in-office videos or information packets to 53

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FDRs, as expedient means of conveying basic information about the diagnosis and treatment of breast cancer once it occurs, as well as breast cancer screening practices and guidelines for family members. Health professionals also can refer family members to cancer information and counseling hotlines to have their questions answered and their support needs addressed. These efforts would likely facilitate the family's ability to function as an ongoing support system for the patient, and would likely improve breast cancer screening compliance among FDRs at increased risk due to their family history. This study also has implications for research. The specific informational and emotional support needs of FDRs identified in this study support the development and testing of counseling interventions for women having a mother, sister, or daughter diagnosed with breast cancer. Counseling interventions should address the emotional impact of the illness on FDRs and the interplay between the patient and FDR, especially those FDRs who are information seekers. Researchers can also work collaboratively with clinicians to develop materials for use in clinic practice, which address FDRs' needs for information and emotional support. Addressing the needs of women with a family history of breast cancer will empower them with the knowledge and resources to better understand their personal risk and become more proactive in their breast cancer screening behaviors and overall 54

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health promotion practices. Ultimately, these efforts will result in less morbidity, reduced mortality, and cost containment within the health care system. 55

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APPENDIX TELEPHONE INTERVIEW INSTRUMENT 56

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1. FIRST -DEGREE RELATIVE BREAST BASELINE CORE INTERVIEW INTERVIEWER ID: [j[J DATE: _l_l_ SUBJECTID-: 0000 0[]::[][] INDEx>eAsEs FIRST NAME: TO IND.,....E.,....X_C_A.,....S'-E:-.-:. ----'-Hello! May I please speak to ____ ? OR Is ____ home? 0 Not a good time 0 Not home 0 FOR refuses [name of FOR] [name of FOR] 1 a [Reschedule, page 2] 1 a [Reschedule, page 2] 1 c [Refusal exit, page 3] 0 Household refuses [If someone else in household refuses, mention that we spoke with {FOR's kinship}, who wanted us to offer our new program to {FOR}, she may be expecting our call. "About a week ago, we mailed her a letter and some info about this call. Is there a good time to try again to reach her?" 1 a [Reschedule, page 2] 0 Yes w Hello, Yourname and phone number were given to us by your {INDEX CASE KINSHIP, INDEX NAME}. My name is and I'm calling from AMC Cancer Research Center to see if you'd be interested in joining our new program for the close female relatives of women who have had breast cancer. By any chance, has your {INDEX cASE KINSHIP} already mentioned that we'd be contacting you about this program? 0 Yes 0 No 57

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Did you receive the letter and brochure telling you about this program? CJ Yes -7 I'm glad or I see that] you received the information. Let me explain briefly what this is all about. [Informed consent, page 5] CJ NO -7 Oh, I'm sorry the brochure didn't reach you. I'll verify that our records indicate the correct address. Let me explain briefly what this is about. [Informed consent, page 5] 1 a. SCHEDULING A BETTER TIME TO REACH FOR ... Is there a more convenient time? 0 Yes 1b. 0 No END CALL 1 b. SCHEDULING A BETTER TIME TO DO INTERVIEW ... What would be a better date and time to call back within the next couple of weeks? Date: Time: _____ At what phone number should I try to reach you/her? 0 Home: ______ 0 Work: 0 Other: _____ Would you like to schedule an appointment for someone to contact you at that time? 0 Yes 0 No CALL 58

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1 c. REFUSAL EXIT AND CLOSING That's no problem. You certainly don't need to feel any obligation to participate. Just for our records, I'd like to get a little information before we hang up. It will only take a couple of seconds. A. Have you ever had a mammogram? 01 Yes B 0 2 No C 0 888 Don't know C 0 999 Refused C B. Was your most recent mammogram within the last 12 months? 01 Yes [J 2 No 0 888 Don't know D 0 999 Refused D C. Can you remember about when it was? 1:1 1 Within the last 3 months E [J 2 Between 3 and 6 months ago E 1:1 3 Between 6 and 9 months ago E [J 4 Between 9 months and 1 year E [J 888 Don't know E D 999 Refused E 59

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D. E. F. Can you remember about when it Os Os 0 888 0 999 Between 1 and 2 years ago More than 2 years ago Don't know Refused What is the highest grade or level of formal education that you have completed? stfi&o:ai 01 None 07 College Graduate 02 Elementary De Some Graduate School 03 Junior High 09 Graduate or 04 High school Professional Degree Os Trade/Tech school Daa8 Don't Know Os Some College 0999 Refused .. "'":':-:7 i How old were you on your last birthday? 0 Age: DO ... 0 sea Don't Know 0 999 Refused G. One last question before I go. Would you mind sharing with me why you'd rather not do this interview? 60

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VERBAL INFORMED CONSENT A. VERBAL INFORMED CONSENT SECTION We are interested in learning more about how breast cancer affects the lives of others in the family. Whether or not you agree to help us is completely up to you and your decision will have no effect on the care or treatment of your [kinship of Index Case]. If you decide to join this program, the information you give us will be kept completely confidential and will not be connected with your name. After this first inteNiew, there will be two follow-up calls made over the next year, one in 3 months and one in 12 months. These calls will be much shorter. Our conversation will be tape recorded for quality control purposes. B. Do you have any questions? 0 YES [Continue answering questions about participation, then obtain Verbal Informed Consent in c.] 0 NO C [Verbal Informed Consent] C. Would you be willing to help us with this project? 0 YES D 0 NO (CONSENT NOT GIVEN = REFUSAL) 1 c [Refusal exit, page 3] 61

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D. Do you have some time to talk with me right now for this first interview? D YES [Continue to Baseline Core Interview, next page] D NO 1 c [Refusal exit, page 3] TO BEGINNING OF DATA COLLECTION ... 62

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BASELINE CORE INTERVIEW SECTION A 1. First, how old were you on your last birthday? D Age: D see Don't know D 999 Refused 2. Would you say your health in general is: 0 1 Excellent 0 2 Good 0 3 Fair 0 4 Poor D sea Don't know 0 999 Refused 3. Have you ever had a major illness such as heart disease, 4. diabetes, stroke or cancer? D 1 Yes 4 0 2 No 0 sea Don't know 6 D 999 Refused 6 What type of illnesses have you had? [CHECK ALL MENTIONED] 0 Heart disease/heart attack 6 D Diabetes 6 0 Stroke 6 D Cancer 5 0 Other (SPECIFY) 6 63

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5. What type of cancer was it? What age were you when this cancer was diagnosed? [ENTER AGE AT DX]: [CHECK ALL MENTIONED]: 888 D Orefused D Lung Orefused D Orefused D Uterine/cervix Orefused D Orefused D Melanoma ii<:<;.;;;-.:;:; Orefused D Colo-rectal could be colon or rectum i6Ji Orefused D Other (SPECIFY) _______ Drefused 999 DD Odon't know DO Odon't know BiJ1lQ89] DO Odon'tknow mvarA'ge DO Odon't know DO Odon't know DO Odon't know DO Odon't know DO Odon'tknow --..... INTERVIEWER: 'If response to above was anything Qther than.non;;.melanoma cancer, exit with ineUgible FOR closing. 6. Thinking back over the last 12 months, that is, since [!!!IS MON!!!] 1996, about how many times would you say you've been to see a doctor for any reason? i566ii:i'7 / 1 D# Times: DO D 888 Don't know D 999 Refused (ENTER ZEROS IF NONE) 64

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7. And when was the last time you had a general check-up or routine physical? D [USE PROBING TECHNIQUES] mm dd yy D 888 Don't know D 999 Refused 8. Now I'd like to ask you a few questions about your breast cancer screening behavior. And, for the purposes-of our research project, if you've had a mammogram, that is, an x-ray of the breast, I'll be asking you when and where you had it. Have you ever had a mammogram? 0 1 Yes 8-a D 2 No 8-e D 888 Don't know 8-e D 999 Refused 8-e Sa. How many mammograms have you had in the last 24 months? o o o 0 1 1 0 2 2 D 3 3 0 4 4 or more 0 888 Don't know 0 999 Refused .. 65

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8b. Was your most recent mammogram within the last 12 months? 0 1 Yes 0 2 No 0 888 Don't know D 999 Refused Sb-1 Can you remember about when you had your most recent mammogram? Would you say it was over a year ago, or within the past year? Within the past year... More than a year ago ... Would you say it was . Would you say it was .. 0 1 within the last 3 months 0 s between 1 to 2 years ago D 2 between 3 to 6 months ago D s over 2 years ago D 3 between 6 to 9 months ago D 4 between 9 to 1 year ago D eee Don't know/Not sure D 999 Refused I'N"I"ERVIE\Wf:R": Probeforse'ason 1 < .. birthdays, holidays, new job move, etc., to iu;sist Sb-2. 8c. re(;ail Can you remember where you had the mammogram? Clinic Name: _______________ Cicy: IcnfiiH & Do you plan to get another mammogram? D 1 Yes 8d D 2 No 9 D 888 Don't know/Maybe 9 D 999 Refused 9 66

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8d. When do you think you'll get your next mammogram? 0 1 within 3 months from now 9 0 2 within 3 to 6 months from now 9 03 within 6 to 9 months from now 04 between 9 mos. to a year from now Ds between 1 to 2 years from now De over 2 years from now Daaa Don't know/Not sure 0999 Refused [QUESTIONS BELOW ARE FOR "NEVER-HAD" GROUP ONLY Q.B = "NO"] Be. Are you planning to get a mammogram in the future? D 1 Yes D 2 No D 888 Don't 9 D 999 Refused 9 67

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Sf. When do you think you might be getting your mammogram? E:Eileil D 1 within 3 months from now 9 D 2 within 3 to 6 months from now 9 D 3 within 6 to 9 months from now 9 D 4 between 9 mos. to a year from now 9 D s between 1 to 2 years from now 9 D s over 2 years from now D 888 Don't know/Not sure D 999 Refused EVERYONE IS ASKED THE REMAINING QUESTIONS: 9. In your opinion, how effective are screening mammograms in detecting breast cancer? Would you say .... D 1 Very effective D 2 Effective D 3 Somewhat effective D 4 Not very effective D s Not at all effective D 888 Don't know/Not sure D 999 Refused 10. How about a physical examination of the breasts by a health professional? In your opinion, how effective are physical examinations of the breasts by a health professional in detecting breast cancer? Would you say... 68

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D 1 Vel}' effective D 2 Effective D 3 Somewhat effective D 4 Not vel}' effective, or D s Not at all effective? D 888 DON'T KNOW/NOT SURE D 999 REFUSED 11a. Has your{. ........ .}'s breast cancer diagnosis had any effect on your desire to get a mammogram? D1 Yes --) 11b D2 No --) 12 D 888 Don't know/Maybe --) 12 D 999 Refused --) 12 11 b. Has it increased your desire or decreased your desire to get a mammogram? D 1 Increased desire D 2 Decreased desire D 888 Don't know D 999 Refused 12. Since her diagnosis with breast cancer, has [ ... NAME oF INDEX cAsE ... ] ever suggested that you get a mammogram? D 1 Yes D 2 No D 888 Don't know/Maybe D 999 Refused !tNtERVIEYV;,FR: Continue __ I 69

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BASELINE CORE INTERVIEW SECTION 8 (PSYCHOSOCIAL ASSESSMENT) 12a. How long has it been since you learned about your ... KINSHIP .. /s breast cancer? D Weeks: DO D 888 Don't know D 999 Refused 13. The next question I'd like to ask you is ... How stressful has your ____ 's [ KINSHIP ) breast cancer diagnosis been for you? 70 D 4 Very stressful D 3 Moderately stressful 0 2 Not very stressful 0 1 Not at all stressful D 888 Don't know D 999 Refused

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INTERVIEWER: For all questions below, circle the numeric score for the responses given. 14. Now, I'm going to read a list of comments made by some people who have a close relative with cancer. Please tell me how frequently these comments were true for you during the past seven days. I'm going to 1. 2. 3. 4. read a statement and I'd like you to answer if this occuffed ..... ... "not at all", "rarely'', "sometimes", or "often". These statements all refer to a relative having breast cancer. Not at all Rarely SomeOften times DK Refused leS1 I thought about my 's breast cancer when I didn't mean to. 888 999 IES2 I avoided letting myself get upset when I thought about it or was 0 reminded of it. 0 888 999 iesa I tried to remove it from my memory. 0 888 999 I had trouble falling asleep or staying asleep, because pictures or thoughts about it came into my mind. 0 888 999 71 1 3 5 1 3 5 1 3 5 1 3 5

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Not at all Rarely SomeOften times DK Refused ress 5. I had waves of strong feelings about it. 0 1 3 5 888 999 lESS 6. I had dreams about my __ 's breast cancer. 0 1 3 5 888 999 7. I stayed away from reminders of my breast cancer. 0 1 3 5 888 999 ,,,_.,-"" IESB 8. I felt as if it hadn't happened or it wasn't real. 0 1 3 5 888 999 JES9 9. I tried not to talk about my 's breast cancer. 0 1 3 5 888 999 1i=s1o 10. Pictures about it popped into my mind. 0 1 3 5 888 999 les:i11 11. Other things kept making me think about it. 0 1 3 5 888 999 iEsi2 12. I was aware that I still had a lot of feelings about it but I didn't deal with them. 0 1 3 5 888 999 Not 72

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DK Refused JE.Sl3 at all Rarely SomeOften times 13. I tried not to think about my ___ 's breast cancer. 0 1 3 5 888 999 14. Any reminder brought back feelings about it. 0 1 3 5 888 999 iEs15 15. My feelings about it were kind of numb. 0 1 3 5 888 999 Now I'd like to ask you some questions about breast cancer risk. First, consider other women your same age. 15a. How high or low do you think your risk is Os Much higher of getting breast cancer compared with 04 A little higher other women your age who ALSO have a close relative with breast cancer? 03 The same Ri$1('11 02 A little lower 0, Much lower Oaaa Don't know 0999 Refused 15b. How high or low do you think your risk Os Much higher is of getting breast cancer compared 04 A little higher with other women your age who DO NOT have a close relative with breast 03 The same cancer? 02 A little lower o, Much lower Oaaa Don't know 0999 Refused 73

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15c. How concerned are you about getting breast cancer? Would you say ... 0 4 Very concerned D 3 Moderately concerned 0 2 Not very concerned 0 1 Not at all concerned 0 eee Don't know 0 999 Refused 15d. How did the diagnosis of your 's breast cancer make you feel 16. about your own chances of getting breast cancer: 0 1 It made you feel your chances were less 0 2 It didn't change your feelings 0 3 It made you feel your chances were a little more 0 4 It made you feel your chances were a lot more 0 eee Don't know 0 999 Refused During the past month, have thoughts about your chances of getting breast cancer affected your mood? Would you say ... 74 0 1 Not at all or rarely D 2 Sometimes 03 Often 0 4 Almost all of the time 0 eea Don't know 0 999 Refused

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17. How important do you feel the following practices are for staying healthy? Vety Somewhat Notvety Not at all Would you say ... Important Important Important Important Eating the right foods 1 2 3 4 888 999 a ng Having a mammogram every 1 2 3 4 year 888 999 """'!J"-'H Mamm Doing monthly breast self-exam 1 2 3 4 888 999 BSB Talking to a health care provider about family history of breast cancer 1 2 3 4 888 999 Having breasts examined by a health professional every year 1 2 3 4 888 999 ,-,if:':'"7'"''"'' E.vsexam Having a screening test for colon cancer every year 1 2 3 4 888 999 Having a screening test for prostate cancer every year 1 2 3 4 888 999 Wearing seat belts 1 2 3 4 888 999 siii Having a PAP smear every year 1 2 3 4 888 999 75

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18. Now, please tell me how much you would agree or disagree with the following statements: "I'm always optimistic about my future" Generally, would you say that you .... 0 s Agree a lot 0 4 Agree a little 0 2 Disagree a little 0 1 Disagree a lot 0 3 Neither 0 888 Don't know 0 999 Refused 19. "In general, people have no control over whether they'll get cancer'' Would you say that you .... Os Agree a lot 04 Agree a little 02 Disagree a little 01 Disagree a lot 03 Neither 0 888 Don't know 0 999 Refused 20. "In general, women have no control over whether breast cancer will be detected early" Would you say that you .... 76 0 s Agree a lot 0 4 Agree a little 0 2 Disagree a little 0 1 Disagree a lot 0 3 Neither 0 888 Don't know 0 999 Refused

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BASELINE CORE SECTION C {DEMOGRAPHICS SECTION) Now I would like to ask you a few more questions to give us an idea of who we're reaching with this program .. 21. What is your racial background? Would you say ... 0 1 White /Non-Hispanic 0 2 Black/African-American 0 4 Hispanic 0 3 Asian/Pacific Islander 0 s Native American/Alaska Native, Native Hawaiian 0 6 Some other group? IDENTIFY: ---= ==:----0 888 Don't know D 999 Refused 22. And what is your marital status? D 2 Married/Living as Married D 3 Separated 0 4 Divorced 0 s Widowed 0 1 Single 0 6 Other 0 888 Don't know 0 999 Refused 77

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23. What is the highest grade or level of formal education that you have completed? 01 None 0 2 Elementary 0 3 Junior High 04 High school 0 s Traderrech School 0 s Some College 0 1 College graduate 0 8 Some graduate school 0 9 Graduate or professional degree 0 888 Don't Know 0 999 Refused 24. How strong would you say your religious or spiritual faith is? 0 1 Very strong 0 2 Moderately strong 0 3 Not very strong 0 4 Not at all strong D 888 Don't know D 999 Refused 25a. What is your current employment status? Full-time Part-time Not currently employed Retired Other: pis. Specify ________ 78

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0 888 Don't Know 0 999 Refused 25b. Do you have a regular doctor or clinic that you visit for health care? 5Wlal .. .. ,_, 0 1 es 0 2 No 0 888 Don't Know 0 999 Refused 25c. Do you have health insurance of any kind, including private, Medicaid or Medicare? 01 Yes 0 2 No 0 888 Don't know 0 999 Refused 25d. What type of health care coverage do you use to pay for most of your medical care? Is it coverage through ... 0 Your employer? 0 Someone else's employer? 0 A plan that you or someone else buys or pays for? 0 Medicaid 0 Medicare or medical assistance program 0 The military (e.g, VA or CHAMPUS) 0 Some other source? 'i'hn 0 Don't know -----0 Refused i:t($;; 79

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25e. Does your health plan pay for screening mammograms? 01 Yes 0 2 No 0 888 Don't know 26 0 999 Refused 26 26. The next questions asks about your family income. This information, which will be treated as confidential, is important because it helps us describe the types of families who are joining this study. During the previous year, what was your total household income, from all sources and before taxes? Was it less than $50,000 or more than $50, 000? IF LESS THAN $50,000 .. THAN $50,000 0 1 Less than $10,000 0 2 $10,000-$20,000 0 3 $20,000 .. $30,000 0 4 $30,000-$40,000 0 5 $40,000 $50,000 0 Don't know 0 999 Refused 80 IF MORE 0 6 $50,000-$60,000 0 7 $60,000 $70,000 0 8 $70,000-$80,000 0 9 $80,000 $90,000 0 10 More than $90,000

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BASELINE CORE -SECTION D (EXPERT WITNESS SECTION) Thank you for answering these questions. Now, I'd like to ask you to share any ideas you might have about what kinds of support, information, or programs that would be useful for close relatives of breast cancer patients. For instance, is there anything that people in health care or health education could have offered you that would have been helpful? (PROBES: would you have benefited from . brochures to read? .. Talking to your relatives' doctor or nurse? . A support group?) INTERVI'EWE.R: Write''ommerl'ts apy ... 81

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," We have now completed everything we need to cover at this time. This has been a lengthy interview and we greatly appreciate your time and participation. We will be calling you again in three months to do a brief follow-up on this call. .verify l'ecorCis; illtlicate ,; num.be.-!5-tol' 3 month future .. Name: ---------------------------------------------------------------------------------Address: --------------------------------------------------------------------------City: ----------------------------State: _____________ Zip code: ______ ____ Phone: --------------------------------------------------These are all the questions I have. Thank you very much for taking the time to talk with me today. The information you've provided will be very helpful to other relatives of cancer patients in the future. END OF INTERVIEW End Time: DO : DO D 0 Indicate if respondent has refused future correspondence aa*ilnes-tud Jmo Refused 3-month follow-up 82

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EXIT SCRIPT AND CLOSING FOR INELIGIBLE FDRS A. I'm sorry, we didn't realize you've had cancer yourself. Although this project is specific to first-degree relatives without cancer, we do appreciate your interest and time. I would like to mail you, free of charge, some information on breast cancer and the latest screening recommendations. B. Should we mail the packet to the same address we used for the letter we sent you? 0 Yes Okay, we'll do that. 0 No To what address would you like the mailing sent? Name: Address: City: _______ State: Zip code: C. I can Jet you go now, unless you have any questions. Thank you very much for your time ... Good-Bye ... --END CALL End Time: ---83

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BIBLIOGRAPHY Ahmed, P.l., Kolker, A., & Coehlo, G. V. (1979). Toward a new definition of health: An overview. In P.l. Ahmed, & G. V. Coehlo (Eds.), Toward a new definition ofhealth: Psychosocial dimensions (pp. 7-22). New York: Plenwn. American Breast Cancer Foundation. (November 27, 1998). Internet source:http:/ /abcf.org/otherrisk.htm. Audrain, J., Schwartz, M. D., Lerman, C., Hughes, C., Peshkin, B. N., & Biesecker, B. (1998). Psychological distress in women seeking genetic counseling for breast-ovarian cancer risk: The contributions of personality and appraisal. Annals ofBehavioral Medicine, 9(4), 370-377. Bloom, B. L. ( 1988). Health psychology: A psychosocial perspective. Englewood Cliffs, NJ: Prentice-Hall. Braithwaite, V. (1992). Caregiver burden: Making the concept scientifically useful and policy relevant. Research in Aging, '14, 3-27. Brandt, B. ( 1991 ). Informational needs and selected variables in patients receiving brachytherapy. Oncology Nursing Forum, .lMl}, 1221-1227; discussion 1227-1229. Brown, K. H., & Corbett, K. (1995). Sociocultural perspectives. In D.P. Lemke, J. Pattison, L.A. Marshall, D. S. Cowley (Eds.), Primary care of women (p. 8). Norwalk, Connecticut: Appleton & Lange. Carlsson, M. E., & Strang, P.M. (1997). Facts, misconceptions, and myths about cancer: What do patients with gynecological cancer and the female public at large know? Gynecologic Oncolology, 65(1), 46-53. Carlsson, M. E., Strang, P.M., & Nygren, U. (1999). Qualitative analysis ofthe questions raised by patients with gynecologic cancers and their relatives in an educational support group. Journal of Cancer Education, .1.1Q}, 41-46. 84

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Cobb, S. (1976). Social support as a moderator of life stress. Psychosomatic Medicine, 38(5), 300-314. Crabtree, B. F., & Miller, W. L. (1992). Doing gualitative research. Newbury Park, CA: Sage Publications. Daune, F. (1995). Psychological aspects ofbreast cancer. (Article in French). Rev Med Brux, 16(4), 245-247. Doherty, W. J. (1985). Family interventions in health care. Family Relations, 34, 129-137. Doherty, W. J., & McCubbin, H. I. (1985). Family and health care: An emerging arena oftheory, research, and clinical intervention. Family Relations, 34, 5-11. Engle, G. L. (1980). The clinical application of the biopsychosocial model. American Journal of Psychiatry, 137, 535-544. Esplen, M. J., Toner, B., Hunter, J., Glendon, G., Butler, K., & Field, B. (1998). A group therapy approach to facilitate integration of risk information for women at risk for breast cancer. Canadian Journal of Psychiatry, 43(4), 375-380. Gilbar, 0. (1998). Coping with threat: Implications for women with a family history ofbreast cancer. Psychosomatics, 39(4), 329-39. Gilbar, 0., & Borovik, R. (1998). How daughters of women with breast cancer cope with the threat of the illness. Behavioral Medicine, 24(3), 115-121. Good, M. J., Munakata, T., Kobayashi, Y., Mattingly, C., & Good, B. J. (1994). Oncology and narrative time. Social Science and Medicine, 38(6), 855-862_Hall, A., & Wellman, B. (1985). Social networks and social support. In S. Cohen and S. L. Syme (Eds.), Social support and health. Orlando, FL: Academic Press. Harris, K. A. (1998). The informational needs of patients with cancer and their families. Cancer Practice, (1), 39-46. 85

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Hoekstra-Weebers, J. E., Jaspers, J.P., Kamps, W. A., & Klip, E. C. (1998). Gender differences in psychological adaptation and coping in parents of pediatric cancer patients. Psychooncology, 10.), 26-36. Hyden, L. -C. (1997). Illness and narrative. Sociology ofHealth and Illness, 1..2.0.2, 48-69. Hughes, C., Lerman, C., & Lustbader, E. (1996). Ethnic differences in risk perception among women at increased risk for breast cancer. Breast Cancer Research and Treatment, 40(1), 25-35. Kash, K. M., Holland, J. C., Halper, M.S., & Miller, D. G. (1992). Psychological distress and surveillance behaviors of women with a family history of breast cancer. Journal of the National Cancer Institute, 84(1), 24-30. Kleinman, A. (1988). The illness narratives: Suffering, healing & the hwnan condition. New York: Basic Books, Inc. Krippendorf, K. (1980). Content analysis: An introduction to its methodology. Beverly Hills: Sage Publications. Kristjanson, L., & Ashcroft, T. (1994). The family's cancer journey: A literature review. CancerNursing, 17, 1-17. Laizner, A.M., Yost, L. M., Berg, F. K., & McCorkle, R. (1993). Needs of family caregivers of persons with cancer: A review. Seminars in Oncology Nursing, .2, 114-120. Lerman, C., Daly, M., Sands, C., Balshem, A., Lustbader, E., Heggan, T., Goldstein, L., James, J., & Engstrom, P. (1993). Mammography adherence and psychological distress among women at risk for breast cancer. Journal of the National Cancer Institute, 85(13), 1074-1080. Lewis, F. M., Ellison, E.S., & Woods, & N. F. (1985). The impact ofbreast cancer on the family. Seminars in Oncology Nursing, lill, 206-213. 86

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Lloyd, S., Watson, M., Waites, B., Meyer, L., Eeles, R., Ebbs, S., & Tylee, A. ( 1996). Familial breast cancer: A controlled study of risk perception, psychological morbidity and health beliefs in women attending for genetic counseling. British Journal of Cancer, 74(3), 482-487. Longman, A., Atwood, J., Sherman, J. B., Benedict, J., & Shang, T. C. (1992). Care needs of home-based cancer patients and their caregivers. Cancer Nursing, 12.. 182-190. Love, R., Wolter, R., & Hoopes, P. (1985). Breast cancer related inquiries by patients to a telephone information service. Cancer, 56, 2733-2735. Malick, M. (1979). The impact of severe illness on the individual and family: An overview. Social Work and Health 117-128. Marcus, A. C., Ahnen, D., Cutter, G., Calonge, N., Russell, S., Sedlacek, S.M., Wood, M., Manchester, D., Fox, L., McCaskill-Stevens, W., Fairclough, D., Hines, S., Wenzel, L., & Osborn, K. (1999). Promoting cancer screening among the first-degree relatives of breast and colorectal cancer patients: The design of two randomized trials. Preventive Medicine, 28(3), 229-242. Marcus, A. C., Garrett, K. M., Cella, D., Wenzel, L., Brady, M. J., Crane; L.A., McClatchey, M. W., Kluhsman, B. C., & PateWillig, M. (1998). Telephone counseling of breast cancer patients after treatment: A description of a randomized trial. Psychooncology, 1, 470-482. Markoff, J., Shapiro, G., & Weitman, S. R. (1974). Toward the integration of content analysis and general methodology. In D. Heise (Ed.), Sociological methodology (pp.1-58). San Francisco: Jossey-Bass. McCaul, K. D., Branstetter, A. D., O'Donnell, S.M., Jacobson, K., & Quinlan, K. B. (1998). A descriptive study ofbreast cancer worry. Journal ofBehavioral Medicine, 21(6), 565-579. McCaul, K. D., Schroeder, D. M., & Reid, P. A. (1996). Breast cancer worry and screening: Some prospective data. Health Psychology, l.llil, 430-433. 87

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Molumphy, S. D., & Sporakowski, M. J. (1984). The family stress of hemodialysis. Family Relations, 33, 33-39. Mor, V., Allen, S.M., Siegel, K., & Houts, P. (1992). Determinants of need and unmet need among cancer patients residing at home. Home Services Research, 27, 337-360. Murawski, B. J., Penman, D., & Schmitt, M. (1978 ). Social support in health and illness: The concept and its measurement. Cancer Nursing, J.ill, 365-371. Northouse, L. L., Templin, T., Mood, D., & Oberst, M. (1998). Couples' adjustment to breast cancer and benign breast disease: A longitudinalanalysis. Psychooncology, 1.(1), 37-48. Richards, L. (1997). User's mistake as developer's challenge: Designing the new NUD*IST. Qualitative Health Research, lQl, 425-433. Robinson, C. (1995). Beyond dichotomies in the nursing of persons and families. Image-The Journal ofNursing Scholarship, 27, 116-120. Sales, E., Schultz, R., & Biegel, D. (1992). Predictors of strain in families of cancer patients: A review ofthe literature. Journal of Psychosocial Oncology, 10, 1-26. Schwartz, M. D., Lerman, C., Audrain, J., Cella, D., Rimer, B., Stefanek, M., Garber, J., Lin, T. H., & Vogel, V. (1998). The impact of a brief problem-solving training intervention for relatives of recently diagnosed breast cancer patients. Annals ofBehavioral Medicine, 20(1), 7-12. Speechley, K. N., & Noh, S. (1992). Surviving childhood cancer, social support, and parents' psychological adjustment. Journal ofPediatric Psychology, .l.1.(ll, -15-31. Steele, R. G., & Fitch, M. (1996). Needs of family caregivers of patients receiving home hospice care for cancer. Oncology Nursing Forum, 23, 823-828. 88

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Stefanek, M. & Wilcox, P. (1991 ). First degree relatives of breast cancer patients: Screening practices and provision of risk information. Cancer Detection and Prevention, J2ill, 379-384. Steffen, V. (1997). Life stories and shared experience. Social Science and Medicine, 45(1), 99-111. Stetz, K. M., Lewis, F. M., & Primomo, J. (1986). Family coping strategies and chronic illness in the mother. Family Relations, 35, 515-522. Stetz, K. M. (1998). Quality of life in families experiencing cancer. In: C. King, & P. Hinds (Eds.), Quality of life: From nursing and patient perspectives (pp.l57-175). Sudbury: Jones & Bartlett. Strauss, A. L., & Corbin, J. (1990). Basics of qualitative research. Newbury Park, CA: Sage Publications. Swanson, E. A., Jensen, D.P., Specht, J., Johnson, M. L., Maas, M., & Saylor, D. (1997). Caregiving: Concept analysis and outcomes. Scholarly Inquiry for Nursing Practice, ll, 65-76. Tho its, P .A. (1982). Life stress, social support, and psychological vulnerability: Epidemiological considerations. Journal of Community Psychology, 10(4), 341-362. Tringali C. A. (1986). The needs of family members of cancer patients. Oncology Nursing Forum, .ll(1), 65-70. Twigg, J., & Atkin, K. (1994). Cares perceived: Policy and practice in informal care. Buckingham: Open University Press. Weisman, A. D., & Sobel, H. J. (1979). Coping with cancer through self-instruction: A hypothesis. Journal of Human 3-8. Weisman, A. D., & Worden, J. W. (1976-77). The existential plight in cancer: Significance ofthe first 100 days. International Journal ofPsychiatry and Medicine, 1, 1-5. 89

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Wenzel L., Fairclough, D., Brady, M., Cella, D., Garrett, K., K.luhsman, B., & Marcus, A. (in press). Age-related differences in the quality of life of breast cancer patients after treatment. Cancer. Worden, J. W., & Weisman, A. D. (1984). Preventive psychosocial intervention with newly diagnosed cancer-patients. General Hospital Psychiatry, 6(4), 243-249. Yates, P., & Stetz, K. (1999). Family coping: Issues and challenges for cancer nursing. Cancer Nursing. 22(1 ), 63-71. Zakowski, S. G., Valdimarsdottir, H. B., Bovbjerg, D. H., Borgen, P., Holland, J., Kash, K., Miller, D., Mitnick, J., Osborne, M., & Zee, K. V. (1998). Predictors of intrusive thoughts and avoidance in women with family histories ofbreast cancer. Annals of Behavioral Medicine, 19(4), 362-369. 90

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Program Mission: Four Foci Four themes related to overall mission emerged from the key informant interview and document review data: I) focus on increasing access to cancer education and screening services; 2) focus on decreasing cancer disparities; 3) focus on dissemination and translation of evidence-based programs and strategies; and 4) focus on survivorship across the cancer continuum. Both study groups were highly invested in increasing access to cancer education and screening, given that they all target the rural uninsured, underinsured, and minorities as underserved populations that experience significant cancer disparities. Not surprisingly when compared to coalitions, cancer center-academic programs more often reported reducing cancer disparities and dissemination and translation of research as objectives. About half of both groups perceived survivorship across the cancer continuum as important. Community education related to screening and early detection was a unanimous, primary goal of both groups. One NCI-funded Community Cancer Network Program director also reported that a key objective of their program is to link individual and systems-level barriers: "If we get people to change their [screening] behavior but there's not a system in place that's friendly and supports that behavior change, it's a wasted effort. This speaks to the 'no treatment, no screening' structural barrier previously described: if follow-up diagnostic care and treatment is not an available or viable option, then "Why be screened?" It also suggests the utmost importance of working at two levels to improve screening-specific outcomes, as this person described: the population (systems) level and the community (individual) level. Capacity-building Strategies Capacity-building strategies, defined as the processes of building a program's infrastructure with adequate funding and staff to enable program implementation and 88

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achieve desired outcomes, was reported as an important strategy by a large majority of cancer center-academic programs (88.9%) and almost half (41.8%) of coalitions. Capacity-building addresses structural-level barriers and includes such strategies as leveraging funding, training of program staff and volunteers, obtaining and using new technology to improve program delivery, and advocacy for policy-level decisions that enhance program delivery. Funding sources, strategies and influences. A wide range of funding sources (Table 5.5), as well as funding levels and fundraising strategies (data not shown) were found for the two study groups. The CDC-funded, state-administered Breast and Cervical Cancer Screening Program was reported almost unanimously by both groups Table 5.5 Funding sources of rural coalitions and cancer center-academic outreach programs, 2006-2008 Coalitions Cancer Center-Academic (n=11) Outreach Programs (n=9) FUNDING SOURCE n % n % CDC Breast & Cervical Cancer Screening Program I 10 I 91.1 9 100.0 Donated time/material/site 10 91.1 5 55.6 Grants (unspecified) 7 77.8 3 30.0 NIH/NCI 7 77.8 7 77.8 American Cancer Society 5 45.5 2 22.3 Fundraising _4 36.4 1 11.1 A r. undation 4 36.4 1 11.1 n G. Komen Foundation 4 36.4 5 55.6 Community agencies/org 3 27.3 2 22.3 Foundation (private) 3 27.3 2 22.3 State-funded colorectal screening program 3 27.3 11.1 Cancer Center 1 9.1 4 44.4 University I 1 II 9.111 8 I 88.9 Business/Industry 0 0 3 30.0 CDC-Other 0 0 2 22.3 State legislature 0 I all 3 30.0 89

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as a primary and "best source" of funding to screen the uninsured and underinsured for breast and cervical cancer, despite the challenges imposed by structural barriers including too little funding and quota restrictions to meet demand, and eligibility inconsistencies across states. West Virginia's Breast and Cervical Cancer Screening Program, for example, has been commended as, "one of the best" in the U.S.; and as previously reported, additional state funding in New York has enabled colorectal cancer screening and prostate cancer education to be added and integrated with the Breast and Cervical Cancer Screening Program, as well as follow-up diagnostic and treatment services for the uninsured. These programs have significantly increased screening among the low-income and uninsured rural citizens in the two states. A large majority of cancer center-academic programs listed university (88.9%) and NIH/NCI (77.8%) funding as main sources of direct revenue; the Susan G. Komen Breast Cancer Foundation (55.6%); cancer center (44.4%); and leveraged funds though unspecified grants, business and industry, and their state legislature (30%, respectively). Except for university funding, most coalitions (77.8%) similarly reported NIH/NCI (primarily technical assistance and mini-grants through the ACCN) and other unspecified grants as a main source of revenue, with more than a third (36.4%) successful in leveraging funds through the Susan G. Komen Foundation, Lance Armstrong Foundation (in collaboration with the ACCN), and local fundraising activities. In addition, more than a quarter of coalitions (27.3%) received funding support from private foundations, community agencies, and a state funded colorectal cancer screening program. Budget amounts ranged from "meager funding" reported by several coalitions (with mostly donated time, materials and facilities for outreach activities) to millions of dollars funded through grants and other leveraged funds for cancer center academic programs. An interesting theme revealed through the key informant 90

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interviews was that funding level did not always match or well reflect program outcomes. For example, one coalition member said, "Our funding sources are mostly in-kind donations. We 've had $59.00 in our checking account since May of 2003. However, in 2007 this coalition managed to get over 200 women (many of whom were Amish) screened for breast and cervical cancer screening through their mobile screening van, other screening events, and a targeted mailing. They also used an adapted survey instrument to successfully complete a county-wide assessment of colorectal cancer-related resources and community needs and educated hundreds of people about the need for screening-all on a shoestring budget. Similarly, it was interesting to hear a program director with an NCI-funded Community Cancer Network in Alabama and Mississippi say, "We 're eligible for 1. 2 million per year, but that's not very much when spread out over two states, 22 counties, and three universities. It's a challenge but enables us to hire community volunteers. Through an extensive network of lay helpers using a one-on-one, social networking approach, that program has successfully reduced the breast cancer disparity between African American and White women in part of its service area over the past several years and implemented numerous other programs in most of their counties. Another program director of a university-based, statewide cancer consortium illustrated the lack of top-level funding support and how they were able to still develop a program through leveraged funds: NCI didn't want to give us any money initially for our programs; eventually we got some, and it was only to go to [a few] specific counties. All of our funding was done through the State Breast and Cervical Cancer Screening Program and Cooperative Extension at the university (my department), and we funded a coordinator to manage the 11 counties that we focus on. We use a community-based approach, and my job is to take that theory and turn it upside down and see what will, and will not work in our specific population. 91

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It's a lot of translation of the research; it's what I am responsible for, and that's what we did in our program. Three cancer center-academic programs in this study in North Carolina, South Carolina, and Tennessee have leveraged substantial amounts of funding from their state legislatures. The combination of university and NIH grants, private industry donations, alignment with their state cancer control plans, and building extensive community partnerships has enabled them to build strong, integrated statewide cancer prevention and control programs to increase cancer screening and decrease cancer disparities in their rural communities. Several cancer center-academic programs have provided mini-grants to their community-based coalitions with demonstrated positive outcomes. For example, a program in West Virginia has leveraged substantial funds from the same private foundation for the past 8 years, much of which they have provided to their community partner groups as mini-grants to adapt and implement evidence-based, cancer education and screening programs. Likewise, among several Community Network Program mini-grant projects funded in Pennsylvania, one evidence-informed cervical cancer-related educational intervention resulted in significant increases in HPV-related knowledge and HPV vaccination intent among women aged 18-26. Another dissemination program is currently underway in three coalitions in Pennsylvania funded through mini-grants to replicate a successful program conducted by an Indiana County coalition which significantly increased mammography screening among low-income rural women recruited through food pantries. Leveraged infrastructure grants have been especially successful for building program capacity for cancer center-academic programs. In addition to the southern two-state, NCI-funded Community Cancer Network Program that trained over 800 community lay health workers in part with infrastructure grants, a cancer center-92

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academic program in North Carolina has used funds from several large NIH infrastructure grants for building program capacity and providing mini-grants to its partner community groups: We're only able to do what we do because of the funding through the CDC, NCI, and also LAF [Lance Armstrong Foundation} funding as a Center of Excellence on Survivorship--all of which are focused on building infrastructure for cancer prevention and control. If all of your research is for implementing research on specific topics, it's gonna take such a long time to build partnerships, because you're always asking community to come partner with you on this specific thing that they may not be too keen on--that they're interested in, but not as invested in--than if you had resources to be IN the community and build those relationships. And the infrastructure grants have allowed us to do that. In the last 3 years with these infrastructure grants, we 're able to fund RF As for community organizations to implement evidence based community education or screening interventions that we think will enhance capacity for getting more people screened. Last year, we only had $40,000 total to disperse (8 groups for $5,000 each), but for some of these counties $5, 000 is a huge amount of money. Three churches adopted the Body & Soul Program and our faculty worked with those churches to adapt the program. We unbundled the program and did only one part the first year, then submitted another proposal this year to add the peer advisor piece. We're also working with Morehouse, Emory, and the University of South Carolina to post an RFA ($20,000 per year; 2-year grant) that specifies fiveR-TIPS interventions, neatly lays out the Community Guide's recommendations for breast and cervical cancer screening promotion, and requires a Memorandum of Understanding that the funded community groups will work closely with university staff to adapt the program in both a feasible and recommended manner. The RF A also told them they can implement Body & Soul or Friend to Friend without a whole lot of adaptation, but they can also take bits and pieces from other R-TIPS. We're also helping to underwrite a Lay Health Advisor Conference in June. One motivation for this is that there's a proliferation of LHA [Lay Health Advisor} programs, but they don't give a whole lot of support for how to manage their programs and match their methods with some of the best evidence-based approaches. So we'll do a Lunch & Learn session at that conference about evidence-based approaches and trying to align your LHA program with recommended strategies; that will 93

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be a Train-theTrainer session with community lay health advisors, as well as program directors. Thus, the contrast in funding levels among and between cases in this study is striking, and the lack of capacity in terms of funding and staff as reported by a large majority of both study groups suggests a key finding in this study: the need for additional and adequate NCI and other major funder support for both cancer center academic outreach programs and community-based coalitions. A second key finding is that leveraged funds and mini-grants awarded to community groups can be successful strategies in achieving increased organizational capacity and sustainability, as well as favorable change in cancer screening rates. New technology. Another program-related, systems-level strategy that emerged from the data was the use of new technology for cancer prevention and control efforts in rural parts of Appalachia. Given the often large geographical distance between cancer center-academic programs and coalitions with their other partner groups, the use of teleconferences and "Webinars" was reported by a few cases in both study groups as having strengthened their program efforts. For example, Webinar technology was used by the ACCN in partnership with the NCI's Cancer Information Service Community Partners Program to successfully train coalition members and agency staff in Appalachian Kentucky, Pennsylvania, and New York on the NCI's Using What Works program for using and adapting evidence-based programs. In addition, both teleconference and videoconference technology is now regularly used for ACCN Community Advisory Board meetings at the network and regional levels in addition to their annual, face-to-face meetings. The ACCN regional program in Virginia now has a state-of-the-art satellite video broadcast system that they use for both their quarterly statewide cancer coalition meetings and rural outreach. The system has been used by a physician to present sessions on clinical trials, 94

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presentations on cancer surveillance, and data reporting and has been "very well received. The system was constructed with successfully leveraged funds from a cancer center, a large health system, two universities, federal funds, and private donors. In North Carolina, teleconferencing has largely enabled establishment of a lay helpers program and has strengthened the program over the past few years. Thus, new technology appears to be a successful, strategic new tool for cancer prevention and control programs in rural communities. Theoretical and Conceptual Approaches In total, key informants named 11 theoretical and conceptual models that they use to guide their cancer-related program efforts, almost half of which were reported to have yielded successful outcomes (Table 5.6). Among these, all 11 coalitions and 7 of the 9 cancer center-academic programs reported that they have collaborated with their academic or community coalition counterparts in community-based participatory research, education and training, including training in evidence-based methods and Table 5.6 Theoretical models and conceptual approaches used in rural cancer screening promotion programs, 2006-2008 Coalitions Cancer Center-Academic (n=11) Programs (n=9) THEORY/ MODEL n % n % Community-based participatory research*t 11 100.0 7 77.8 Social networking*t 4 36.4 5 55.6 Faith-based health promotion*t 3 27.3 5 55.6 Logic models 3 27.3 0 0.0 Social learning/ cognitive theory* 3 27.3 2 22.3 Diffusion theory*t 1 9.1 0 0 Stages of Change*t 1 9.1 4 44.4 Community capacity-bldgt 0 0 4 44.4 Health belief model 0 0 4 44.4 Empowermentt 0 0 3 30.0 Motivational interviewing 0 0 1 11.1 Successful outcome resulted (coalition) t Successful outcome resulted (cancer (center-academic program) 95

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collaboration on mini-grants using evidence-based approaches. As previously noted, the coalitions in this study are all research partners in the ACCN. Each coalition has one or more representatives who serve on their local Community Advisory Board (CAB), and there is one representative from each of the five regional CABs on the Community Advisory Committee that advises and interacts with the Steering Committee of the Appalachian Community Cancer Network. Community-based participatory research is considered a prime directive of this network and the cornerstone of most ACCN interventions. Social networking was an especially effective approach used by both study groups. The Community Cancer Network Program in Mississippi and Alabama, which has successfully reduced the breast cancer disparity among African American Medicare recipients in much of their service area, met this objective in part by using a one-on-one, social networking approach through their extensive community health workers network: For folks we provide services to, we use the circle of influence network: people close to them, be they their church members, coworkers, neighbors, friends; anyone within that close social network. Those are the folks we try to approach first and we like to call those folks the 'low-hanging fruit'. And then we like to expand outside of their network to the 'higher-hangingfruit'. Those are the folks they don't know and don't have a relationship with; low-hanging fruit and high-hanging fruit. High hanging fruit are the ones that you can't readily get to. You're going to have to get on a ladder and you're going to have to really stretch and reach beyond your circle; you have to stretch yourself in order to reach these people. In Kentucky, a coalition member is working with an academic researcher on a cervical cancer early detection and prevention program among faith-based groups, using a social networking approach with women in local churches to promote Pap testing and the HPV vaccine. A key informant from this coalition reported that 96

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participation in the program has been tremendously successful: "We have so many women coming in now wanting Pap screening who say a girl at their church told them about it, they're having trouble keeping up with the demand. In our world, that is success. Similarly, a Community Cancer Network Program in South Carolina partnered with African American churches to coordinate Witness Project events, using a social networking approach to share education and screening information with female church-goers: With African American churches, we have been using the Witness [evidence based] Project in collaboration with [researcher name} at Clemson University. Every time we go out, we recruit new women to come and be trained to serve as witnesses for breast cancer screening, lay helpers, and such. The Witness Project has been very well received among African Americans; so well that we can't keep up with the demand. We are booked through the Fall [interview date: June 26, 2008]. Another coalition member in Kentucky characterized their coalition as "a vehicle for Diffusion Theory in getting the message out to the community". In effect, the social networking approach used by the coalition to disseminate cancer screening messages through family members is very effective, because families in Appalachian Kentucky tend to be "tight-knit" and rely on family members for much of their health communication. In addition, Social Learning Theory helps dispel unhealthy lifestyle behaviors such as smoking, which in this population has long been a culturally acceptable practice and norm: If you tell one person and they tell another, and they tell another, this is an excellent way to get the message out. If one family member receives a health education message, they will hopefully tell another and that message will kind of ripple out across all family members. Also Social Learning Theory, because (and the coalition takes a stance that) people have to be taught that what they were raised with isn't always the best option. So we target younger 97

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people especially and go back and say, 'Let's unlearn a little bit of the socialization; it's not necessarily OK to come out of church and light up a cigarette as soon as you step out the door, or go to the bingo hall on Saturday night and smoke-that's not necessarily the best option. So between Diffusion Theory and Social Learning Theory, I think we'll get it. Community capacity-building models were used by a number of cancer center academic programs to build integrated, statewide cancer prevention and control partnership programs in Tennessee, North Carolina, and South Carolina. For example, the Team Up Tennessee: Cancer Education Program based at the University of Tennessee is a state and county partnership with the American Cancer Society's Mid-South Division, NCI's Mid-South Cancer Information Service, the Knoxville Affiliate of the Susan G. Komen for the Cure, the Tennessee Breast and Cervical Screening Program, and the University ofTennessee Extension. Being university-based, we are viewed as credible and as leaders in our community, so we become very powerful change agents for our communities. Cooperative Extension is the critical player, as we are in every county in the state and resources are limited. And we don't sit in our office, because we're out there in the field. Team Up has proven to be a very mobilizing body because we all have the same mission, share resources, do not duplicate efforts, and tailor our programs to the communities we serve. Many hospitals want to expand their outreach but don 't have the capacity to get out and do it; and the American Cancer Society doesn't have field staff to get their message out. So the 'hub and wheel' structure provided by Team Up, with Cooperative Extension as the conduit for outreach, being structured to facilitate groups and having the time and resources to coordinate these efforts, has made for a perfect relationship for statewide cancer prevention and control. The program has been very successful: statistically significant increases in cancer screening rates have been shown for all 11 counties as our activities have increased, and the network continues to grow. Team Up's comprehensive approach has been cited by the state as exemplary, and our visibility within the state has substantially grown. 98

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Use of the Transtheoretical Model of Change, or Stages of Change approach was reported by almost half of cancer center-academic outreach programs, one of which characterized their use of this and other models used as, "general health behavior models and behavior change: contemplation, pre-contemplation. In general, we pay attention to where they are in their stage of behavior; pretty general." In Kentucky, the state with the highest smoking rate in the U.S., a cancer center-academic researcher reported that they attempt to use theoretical approaches in everything they do, and they also follow the Transtheoretical Stages of Change Model to overcome the lack of knowledge barrier and to define success in their programs: We try to bridge the lack of knowledge and the willingness to move along the continuum of change, and that it's OK to question the doctor, because people aren 't thinking about screening. It's not on their radar screen, so we try to move them from pre-contemplation to contemplation, action, and sustaining their behavior. One of this program's partner community coalitions has collaborated with another university researcher on a project using a community readiness model based on Stages of Change theory to evaluate a community's readiness for tobacco-related policy change and determine stage-specific strategies to advance a community towards policy change. Although there is currently no available screening test for lung cancer and outcome data for this particular project is not yet available, the application of Stages of Change theory to community readiness for tobacco policy change holds great promise for reducing the disparate lung cancer incidence and mortality in Appalachian and other rural communities. In West Virginia, recognizing that community pharmacists are among the most available and most trusted professionals in rural communities, a cancer center academic program partnered with rural pharmacists to help educate community residents about colorectal cancer screening. The pharmacists attended three to four 99

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educational sessions and received continuing education credits. Didactic education was provided on polyp transformation and Stages of Change Theory, as well as information on how to be agents of change. The project became the basis of a pilot study proposal with a small group of community pharmacists that was submitted for funding. Although no formidable outcomes resulted from this project, disseminating Stages of Change theory to potential change agents appears an important and innovative step towards increasing cancer screening in their communities. Although use of theoretical models and conceptual approaches was found for both cancer center-academic programs and some coalitions, an observation made in the analysis of these data was that many of the coalitions actually use theory-based strategies but were not familiar enough with health behavior theory to articulate their efforts within these frameworks. For example, almost half of coalitions reported capacity-building as critical to the success of their outreach programs, yet none of these key informants framed their capacity-building activities in terms of theory. Another component in this 'disconnect' between researchers ('science') and communities may be that coalition members may not care as much about theory and conceptual models as what they can actively do to bring about health behavior change, as suggested by a coalition member in Kentucky in this vignette: We're not using any theoretical models; not in an overt way, anyway. I'm sure [researcher I name} is in her work, and I'm sure that [researcher 2 name] is .... I think it's a matter of, they are really sensitive to the fact that when they come to [community name}, we don't really care about that stuff I mean, I might care, but I'm an unusual member of this community, and I might care and want to hear about it for about 5 minutes, but that would be it and I wouldn't want to hear any more. Because it's not something that really drives people here; it's just way too abstract, developed by people that are not from here. It's foreign, not credible, not trustworthy, it's irrelevant. So the best thing to do, and I think it's what [researcher I and researcher 2] probably do, is that rather than talk it, they walk it. And that's what you have to do; 100

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because that's what works. So they've done a good job, because I can't (laughs) give you any example of a presentation or anything that they've ever given to us as a community advisory group in terms of health education, behavior change theory, anything. What matters here is showing up, just being here. Rural people know this. It's really just teaching the people from [city name] that if you want to work effectively with us, you have to be here. Researchers should heed the advice ofthis voice of the community; in effect, there are ways to use theory and conceptual approaches in collaborative programs with communities without preaching it. Framing theoretical concepts in lay terms that community members can easily understand, teaching by example, and 'being there' are extremely important. Nonetheless, the data in this study support theoretical and conceptual approaches as a best practice strategy in promoting cancer screening in these rural populations. Evidence-based and Evidence-informed Strategies The use and utility of evidence-based programs and evidence-informed strategies was found to vary widely between and across cases in this research (Table 5.7). A large majority of cancer center-academic programs (77.8%) reported using evidence based approaches in their outreach programs, more than half of which strive "always" to use such practices. Of the two that have not used such strategies, both would like to but lack sufficient funding and staff to adopt these methods in their work. Evidence-based programs used by cancer center-academic programs included the Witness Project for African Americans and faith-based programs for Latinas in South Carolina, and the Body & Soul Program adopted by three churches in North Carolina. Evidence-based strategies recommended by the Community Guide were utilized by just over half (55.6%) of these cases, most of which were worksite interventions. 101

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Table 5.7 Evidence-based and evidence-informed strategies used by coalitions and cancer center-academic outreach programs, 2006-2008 Coalitions Cancer Center-Academic (n=ll) Programs (n=9) STRATEGY N % n % Evidence-based approaches (in general) 7 63.6 7 77.8 Community Guide recommended strategies"'t J.. 7 63.6 5 55.6 Cancer P.L.A.N.E.T. 6 54.5 7 77.8 Adapted survey/ questionnaire"' 6 54.5 0 0 Tell A Friend"' 4 36.4 0 0 Targeted mailings 3 27.3 1 11.1 NCI-provided Consumer Health Profiles 2 18.2 0 0 Body and Sou It 1 9.1 2 22.2 Witness Projectt 1 9.1 2 22.2 Woman to Woman 1 9.1 0 0 Successful outcome resulted (coalition) t Successful outcome resulted (cancer (center-academic program) J..Majority were worksite interventions (both groups) Among coalitions, a similar proportion (63.6%) also used evidence-based approaches, especially evidence-informed strategies; for example, adaptation of validated survey or questionnaire instruments. A coalition in Pennsylvania (cited previously) adapted an existing, validated questionnaire as a pretest and posttest instrument for their recent HPV education and vaccination promotion program, which demonstrated significant change in HPVand cervical cancer-related knowledge and intent to obtain HPV vaccination among program participants. Two coalitions in northeastern and northwestern Pennsylvania adopted the American Cancer Society's evidence-based Tell A Friend program (listed on Cancer P.L.A.N.E.T.), resulting in over 500 completed breast cancer screenings per year in each oftheir counties. Yet another coalition in southwestern Pennsylvania adapted the Tell A Friend program to promote mammography among low-income women attending local food pantries in their county. Results showed 138 completed mammograms (a 28.2% increase in screening mammography in the county in 2005) and three women diagnosed and treated for breast cancer. The Witness Project and the Body & Soul program (both 102

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listed on Cancer P.L.A.N.E.T.) are currently being implemented by a coalition in New York State, and several other coalitions were found to be working currently on adopting or adapting evidence-based programs. A number of additional, evidence-based strategies used by one or more cases in both study groups included: targeted mailings; NCI-provided Consumer Health Profiles (detailed data on a community's healthcare utilization, demographics, lifestyle and media preferences); and Woman to Woman, a program listed on Cancer P.L.A.N.E.T. designed to increase breast cancer and cervical cancer screening in the worksite setting. It is instructive to note that while more than half of both study groups were trained on and/or used the Cancer Control P.L.A.N.E.T. web portal to locate evidence-based programs, the relative scarcity of such programs currently listed on P.L.A.N.E.T. was cited by many key informants as both disheartening and frustrating. A university-based program director in Tennessee attributed this dilemma as partly due to the 'disconnect' between researchers and communities, but also how their program was able to successfully adapt a program found elsewhere in the health literature for a rural population in their service area: We intended from the beginning to utilize Cancer P.L.A.N.E. T, and we have a list of what we consider to be community-based, evidence-based programs. Unfortunately for us, there wasn 't anything that dealt with White, Appalachian women; it was Korean women, African American women, and inner city women; nothing matched. However, we looked at one I think is called FOCUS, which didn 't do anything novel (I call it typical health education) but had a clinical [screening} component and an educational component with classes. So we adopted the multiple-strategy premise from that program and decided to have one activity that promoted the state's Breast and Cervical Cancer Screening Program and one activity that did screening. The 'Free Screening Day' in multiple counties was our activity, which resulted in higher numbers of screening on that one day in those counties than we previously had in the whole year. So it was a very powerful 103

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tool in reaching women. That was our evidence-based program, but what we were doing was basic health education, and we couldn 't use their materials because they targeted African American women. I think the problem in getting more evidence-based programs is that funded research aims to answer specific questions in a way that doesn't allow sufficient flexibility to tailor a particular strategy or program to the targeted community or what the community even wants. So there's a real clash in terms of what questions are answered, and the literature is not full of that kind of thing, because it doesn 't occur. Clearly, the use of evidence-based programs and strategies is currently in its infancy, especially in rural communities. The key finding to report herein is that despite the paucity of recommended research-tested interventions and strategies, both community-based coalitions and cancer center-academic outreach programs increasingly have begun to embrace these methods with demonstrated success. Thus, evidence-based programs and strategies should be considered a best practice strategy for rural cancer screening promotion. Community Engagement Strategies A rich variety of community engagement strategies, defined as methods used to gain participation by members of the intended audience in cancer screening promotion programs, were revealed in this research. Community engagement strategies were found to fall within two domains, or categories: 1) trust and relationship-building strategies, and 2) recruitment and retainment strategies. These strategies are further detailed, as follows. Trustand Relationship-building Strategies By definition, human service programs are a social endeavor. Community engagement for program implementation in any setting begins with establishing trust and relationships, to facilitate entry into a community and foster participation of the 104

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intended audience. The key informant interviews in this study were invaluable for delineating the various strategies for building trust and relationships in rural communities. Two subcategories of strategies related to this theme emerged from the data: participatory approaches and partnership networks (Table 5.8). It is instructive to note that, as with other categorical themes in this study, some of these strategies overlap with each other and are therefore non-discrete. Table 5.8 Community trustand relationship-building strategies in rural cancer screening promotion programs, 2006-2008 Coalitions Cancer CenterCoalitions Cancer Center(n=11) Acad. Programs (n=11) Acad. Programs (n=9) (n=9) PARTICIPATORY N % N % PARTNERSHIP N % % APPROACHES NETWORKS n Community 11 100.0 7 77.8 Community Cancer 11 100.0 5 55.6 involvement*t Network Prog. *t Community 8 72.7 7 77.8 American Cancer 10 90.9 4 44.4 assessment*t Society*t Organizational 8 72.7 4 44.4 Providers*t 9 81.8 8 88.9 Champion*t Community 7 63.6 1 11.1 Dept. of Health*t 7 63.6 9 100.0 volunteers*t NCI's Cancer Info. Gatekeeper*t 7 63.6 7 77.8 Service 6 54.5 5 55.6 Community Partner Program*t Community 6 54.5 7 77.8 BCCSPt 5 41.8 7 77.8 champion*t Paid 5 41.8 8 88.9 Churcht 5 41.8 8 88.9 volunteers*t Faith-based 4 36.4 8 88.9 Susan G. Komen*t 4 36.4 5 55.6 programs*t Focus groupt 1 9.1 4 44.4 Coalitions*t 3 27.3 4 44.4 Empowermentt 0 0 3 30.0 Cooperative 3 27.3 1 11.1 Extensiont Lay helperst 0 0 4 44.4 Agency on Agingt 2 18.2 1 11.1 Food pantries* 1 9.1 0 11.1 Lions Club* 1 9.1 1 11.1 Successful outcome resulted (coalition) t Successful outcome resulted (cancer (center-academic program) 105

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Participatory approaches. Community involvement in the development and implementation of screening initiatives was reported almost unanimously by all 11 coalitions and 7 of 9 cancer center-academic programs. Several strategies under the umbrella construct of community involvement were offered and illustrated. As a starting place, community assessment, defined as processes to determine the needs of the intended audience, was a strategy used by a large proportion of both study groups. Surveys were more frequently employed by cancer center-academic programs and effective for both engaging community member involvement and assessing community needs (data not shown). Survey assessments conducted by two coalitions were unexpectedly discovered as an effective educational tool, evidenced by feedback received from survey participants. Another coalition experienced an unanticipated gain in new members on their coalition as a result of a community assessment that they conducted. Focus groups conducted with community members were especially useful for cancer center-academic programs to guide program development and implementation. Focus groups provided a forum for personal interaction with community members and to gather in-depth information about the community's unique, social and cultural make-up and barriers to cancer screening from the community's point of view. The information gleaned through focus groups guided program development and implementation, but also resulted in new partnerships and greater trust between program staff and community members. A university-based program director in North Carolina spoke of the value of focus groups in their work, evidenced in part by their successful lay helpers program that resulted in 456 low-income, White, African American and Hispanic women screened for breast and cervical cancer and 1 ,943 who received cancer-related health education: 106

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Almost every project starts out with some focus groups in the local community to assess specific needs, perceptions about the health topic, and identify the opinion leaders in the community who we should be engaging. For example, so much of our work began with lay health advisor recruitment, asking women who they talked to for information, and then we turned to the people whose names were mentioned most often. Identifying and engaging individual and organizational community champions and gatekeepers constituted another important strategy for building community trust and relationships. Community champions are defined herein as individuals or organizations that support, promote, or advocate for programs that seek to increase cancer screening among rural residents. Community gatekeepers are defined as individuals or organizations that facilitate (or impede) program entry into a given rural population. It is instructive to note that community champions and gatekeepers were found in some instances in this study to be indistinguishable, as some such individuals were found to be one and the same. A majority of both study groups reported successful outcomes resulting from engaging community champions and gatekeepers. Identifying and working with community champions and gatekeepers was particularly useful for interventions that targeted minority groups in rural communities. Some coalition key informants named members of their own coalition as community champions and gatekeepers. For example, a local school district superintendent in Kentucky who is a colorectal cancer survivor and member of the coalition served as a bridge between the coalition and local schools for implementation of a colorectal cancer education and screening initiative in their community. Among Amish populations community champions were reported to include trusted primary care physicians (e.g., "Dr. Diane"), university researchers and Department of Health immunization nurses, all of whom had a long history of trusted relationships with the Amish community. Yet another key informant and 107

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community champion is a nurse practitioner and member of her local cancer coalition who maintains a very busy clinical practice, yet goes out regularly into the community to conduct cancer education and screening outreach. Since 2006 she has participated in 46 health fairs and collaborated with her coalition at many other community events and worksites, using a multiple component approach to target multiple conditions at each event. The result has been hundreds of community residents educated and screened for breast, cervical, and colorectal cancer, many of whom (and others) were also counseled on smoking cessation, nutrition, and physical exercise. Other examples of community champions and gatekeepers who played a key role in successful screening programs were identified, including: Amish elders, an Amish pastor's wife, and both Amish and non-Amish wives who attended cancer screening programs and then took FOBT kits home to their husbands, or recruited their husbands to colorectal and prostate cancer screenings; African American and Hispanic/Latina church pastors and leaders; and a Head Start pre-school program in rural New York attended by the children of migrant Hispanic/Latina vineyard workers, who the coalition worked with to enlist parents for cancer education and screemng. Partnership networks. Establishing, maintaining, and continually growing partnership networks emerged in this research as a central theme and crucial strategy for promoting cancer screening in rural communities. The data revealed somewhat different partnership networks of the two groups. Partnerships of cancer center academic programs included more population-based, systems-level entities (e.g., state cancer control plans, state and national consortiums, other universities), while coalition partnership networks included more community-based, individual-level entities (e.g., local health agencies, businesses, civic organizations). However, partners common to both study groups included: their regional NCI Community 108

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Cancer Network; local chapter(s) of the American Cancer Society; local health care providers, including hospitals, primary care practices, and individual healthcare professionals; state and local Department of Health; the CDC's state-funded Breast and Cervical Cancer Program; the NCI's Cancer Information Service; churches; the Susan G. Komen Breast Cancer Foundation; as well as local coalitions including those in the study sample and others (Table 5.8). In addition, Cooperative Extension was found to be the central and major partner in one cancer center-academic outreach program, which collaborates closely with the state's Breast and Cervical Cancer Program. Among coalitions, in addition to other examples too exhaustive to list within the scope of this narrative, food pantries and the Lions Club were cited as major players in successful screening initiatives. Examples of these partnerships and their screening program outcomes are given, as follows. Among cancer center-academic programs, an exemplary partnership network in West Virginia was comprised by the CDC/state-funded Breast and Cervical Cancer Screening Program, a major cancer center, university, regional division of the NCI funded Appalachia Community Cancer Network (ACCN-WVU), and local healthcare providers and hospitals has resulted in approximately 16,000-18,000 women (20%40% of those eligible) screened in the state each year for either initial or repeat, annual screening. In addition, the partnership was reported to be successful in screening many underserved rural residents for colorectal and prostate cancer (data not provided). A glimpse into the various partner roles and their inter-collaboration was provided by three key informant staff members involved in this partnership: The Breast and Cenlical Cancer Screening Program serves all 55 counties in West Virginia. Funding comes from the CDC through the state to the cancer center, which maintains the public and professional education component of the program, as well as the partnership and collaboration piece. There are 109

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I 54 breast and cervical cancer screening providers and about I 00 referral providers around the state for the program. ACCN [based at the university} doesn't engage in screening as a group, but instead promotes other screenings through our partnerships; quite a bit through the Breast and Cervical Cancer Screening Program. We partner with hospitals and clinics for Paps, mammograms, clinical breast exams, PSAs!DREs, and a lot of FOBTs!F/Ts. Locations for the free screenings include clinics, federally approved health centers, and hospitals. Free Paps are offered to women who don't qualify for the Breast and Cervical Cancer Screening Program, and mammograms are offered in conjunction with other screening events. FOBTIFIT is provided by the clinic or hospital. The hospital takes on responsibility for follow-up care. Through our many partnerships, we 've increased screening for the rarely and never screened and decreased time from screening to diagnosis and treatment. A second exemplary example is the statewide, "hub and wheel" TeamUp cancer prevention and control partnership network in Tennessee (previously described). In this network, the various partnership teams determine the strategies used to achieve their goals. Initially, the NCI wanted all TeamUp partners to use a template (one strategy) that would be consistent across all communities and populations for increasing cancer screening, but as one respondent reported: Team Up recognized that a 'one size fits all' approach would definitely not work for our II counties and resisted the use of a single template, because communities are not all alike, and you can 't put a footprint down and say, 'everyone's going to do it this way'. Team Up has proven to be a very mobilizing body because we all have the same mission, share resources, do not duplicate efforts, and tailor our programs to the communities we serve. Many hospitals want to expand their outreach but don't have the capacity to get out and do it, and the same with the American Cancer Society that doesn 't have field staff to get their message out. So the 'hub and wheel' structure provided by Team Up, with Cooperative Extension as the conduit for outreach and being structured to facilitate groups and having the time and resources to coordinate these efforts, has made for a perfect relationship for statewide 110

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cancer prevention and control. The program has been very successful: statistically significant increases in cancer screening rates have been shown for all 11 counties as our activities have increased, and the network continues to grow. Team Up's comprehensive approach has been cited by the state as exemplary, and our visibility within the state has substantially grown. Among coalitions in rural communities, partnerships were similarly shown as crucial to the success of their outreach and screening efforts. By definition, community-based cancer coalitions ARE partnerships, and partnership is the "fuel that drives everything we do. Many good examples of successful community partnerships were found in this research, many of which have already been noted in this narrative: churches, local healthcare providers, food pantries, schools, universities, the local Komen affiliate, civic organizations, businesses, Area Agency on Aging, drug and alcohol organizations, prisons, and other local health agencies. The local media was reported as another important partner in rural communities, in terms of both 'getting the word out' about the need for screening and available programs and events, but also media personnel being directly involved in the coalition's program planning including as coalition members. A coalition key informant in Kentucky illustrated this well: A strength of our coalition is our relationship and work with the media, including a local TV station that has a sister station in Lexington and a representative on the coalition who is very community-oriented and focuses on health and the community. The station itself has a health focus and is very community-based, with a community Mountain Calendar, a regular Monday program called, 'Issues and Answers' on which the coalition has done programs on colorectal cancer and breast cancer, and other programming. We also use the local newspapers and radio stations. Because we're a small community and everyone knows everyone else, it's easy to get media representatives to come in and say, 'I'll take care ofthisfor you.' So we have that media person built into our coalition. 111

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This coalition-media partnership has been a key factor in the success of several screening-related events and initiatives, including an ACS Freedom Bus event hosted by the coalition, in which "tons of people" participated and were screened for breast, cervical, colorectal, and skin cancer; and a community-wide colorectal cancer campaign. With regard to this latter event, another key informant from the coalition reported: That campaign was promoted through TV primarily by a young reporter who did things like went in for a colonoscopy, even though she was only about 30 years old. She talked about it on TV to educate the public and presented it in a culturally-sensitive way, since she's from the community. So she reached a lot of people. Based on these and many other examples found in this study, the data clearly demonstrate partnership networks as a best practice strategy for promoting cancer screening in rural communities. Recruitment and Retainment Strategies As the second major category of community engagement, strategies used to accrue rural residents into cancer screening initiatives (recruitment) and to promote continued participation in repeat programs and regular screening (retainment) were demonstrated as crucial for improving cancer screening outcomes. Intervention sites. The specific location of intervention sites was found to be particularly important for increasing access to screening. Site location was observed as interrelated with, and often dependent upon, the specific partnerships of the two study groups noted above. Although some intervention sites have been indicated in the previous narrative, the importance of site selection provides ample justification for the presentation of additional findings. 112

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Both study groups selected a wide range of intervention sites over the past three years (Table 5.9). In terms of screening success, sites where both coalitions and Table 5.9 Intervention sites in rural cancer screening promotion programs, 2006-2008 Coalitions Cancer Center-Academic (n=11) Programs (n=9) INTERVENTION SITE N I % I N I % -Primary care clinic*t 9 81.8 9 100.0 -Health fair/ health fair approach*t 9 I 81.8 6 66.7 -Hospital*t 9 81.8 6 66.7 -Mobile screening van*t 7 I 63.6 4 44.4 -Worksite*t 7 63.6 5 55.6 -School/college* 6 I 54.5 1 11.1 -County/state health center* 5 I 41.8 5 55.6 -Church*t 4 36.4 8 88.9 -Cancer centert 0 0.0 6 66.7 -County fair 3 27.3 0 0 -Senior center 3 27.3 2 22.3 -Conference/symposium facility* 2 18.2 0 0.0 -Federally-qualified health center 1 9.1 2 22.3 -Farmers' grange 1 9.1 1 11.1 -Mexican-Latina celebrations 1 9.1 1 11.1 -Amish health & safety fair* 1 I 9.1 0 0.0 -ACS Freedom Bus* 1 I 9.1 0 0.0 -Courthouse 1 I 9.11 0 I 0.0 -Craft show 1 I 9.11 0 I 0.0 -Floral shop 1 I 9.1 0 0.0 -Food pantries* 1 9.1 0 0.0 -Golf course 1 9.11 0 I 0.0 -Barber shop/ beauty shop 0 0.0 2 I 22.3 -Laundromat 0 0.0 1 I 11.1 -State health fairt 0 0.0 1 I 11.1 -Wai-Mart 0 0.0 1 I 11.1 -Water park/ beach 0 I 0.0 1 I 11.1 Successful outcome resulted (coalition) t Successful outcome resulted (cancer (center-academic program) Lost funding/staff (for one or more cases, in one or both groups) 113

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cancer center-academic outreach programs have been particularly successful in achieving desired cancer screening-specific outcomes included: primary care clinics and hospitals; mobile screening vans; worksites; churches; and some health fairs, especially an annual state health fair in Kentucky where "thousands were screened over the past few years"; and sites where a health-fair approach with multiple components was used to target multiple conditions and people were either scheduled or screened onsite. Cancer centers served as a favorable screening site for a majority of cancer center-academic outreach programs. Other successful sites for coalitions included: county and state health centers; food pantries (numbers screened previously cited); conferences where screening was offered (e.g., "more than 100" people screened at one annual, coalition-sponsored symposium); and the event that featured the American Cancer Society Freedom Bus in Kentucky ("tons of people were there"). Mobile screening vans have been particularly successful in providing access to screening in rural communities. For example, cancer screening in rural communities of South Carolina has been primarily through a 40-foot mobile screening unit in existence since 1998 and a new unit purchased in 2007. Screenings are performed for breast (digital mammography), cervical, prostate, skin and oral cancer. In 2006, I ,3 78 screenings were completed; in 2007, this number rose to I ,632; and in the first three months of 2008, completed screenings totaled 1 ,596. Sustainability of the mobile unit has been built through leveraged funds from multiple sources (state allocated federal funds, philanthropic gifts, the Nissan and Wachovia Foundations), and strong commitment from the university's medical community. A medical director oversees all aspects of the van's operations. Staffing includes two paid, nurse practitioners (one of whom specializes in breast and cervical screening, the 114

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other in prostate screening); a full-time mammography technician; a phlebotomist; and two other staff who drive the van and register clients. In defining success in their outreach programs, one key informant said of this unit: "Success is asking if they would have gotten screened if mobile hadn 't come to their community; 64% of people say they wouldn 't have been screened if the mobile unit hadn 't been available. Based on the intervention sites found to be selected by these outreach programs, a key finding of this study is that "going where the people are", particularly via mobile screening vans and easily accessible community sites, constitutes a best strategy for rural cancer screening programs. However, another sad and ironic finding is that many rural communities that once had mobile screening vans in the past no longer have this valuable screening resource because oflost funding and staff support. Clearly, with additional funding support and commitment by cancer centers and other key players, access to cancer screening could be much improved in rural communities. Intervention strategies. A wide range of intervention strategies were used by the two study groups. A number of these were shown to be highly effective in promoting cancer screening (Table 5.1 0). Community education was unanimously used and considered or demonstrated by cases in both study groups to be an essential starting point for facilitating cancer screening and prevention behavior change. One-on-one education (the basis of social networking) was shown to be especially successful for screening mammography, as in the Alabama-Mississippi experience. Other educational strategies included group education to increase cancer-related knowledge and the need for screening, as well as to 'demystify' and 'destigrnatize' cancer to erase misconceptions, myths, and fatalism. Two examples ofthe effectiveness of community education for screening promotion cited previously were: the Pennsylvania coalition's HPV educational program for women aged 18-26 that 115

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Table 5.10 Intervention strategies in rural cancer screening promotion programs, 2006-2008 Cancer Cancer Coalitions Center-Acad. Coalitions Center-Acad. (n=11) Programs (n=11) Programs (n=9) (n=9) STRATEGY N % n % STRATEGY N % N % Comm. Educat.*tA 11 100.0 9 100.0 Incentives: 5 41.8 2 22.3 One-on-onet ..1.. 4 36.4 5 55.6 -Food Multiple strategy 9 81.8 9 100.0 -Gift card 4 36.4 0 0.0 approach*t ..1.. Target multiple 8 72.7 6 66.7 -Gas cards"' 2 18.2 3 30.0 conditions*tA Refer to BCCSP or 8 72.7 9 100.0 -Child care 1 9.1 1 11.1 CRC Program*tA Small Media: ..1.. 8 72.7 4 44.4 Financial/\ 0 0.0 1 11.1 Brochure/flyerA Radio*A 7 63.6 1 11.1 Tailort 4 36.4 7 77.8 -Word of mouth* 7 63.6 1 11.1 Provider educationt 4 36.4 7 77.8 Newspapert 5 41.8 2 22.3 Demystify cancert 4 36.4 2 22.3 Local TV"'A 5 41.8 1 11.1 Technical assistance 3 27.3 3 30.0 -Church bulletint 1 9.1 1 11.1 MD speaker 3 27.3 2 22.3 Payroll insert 1 9.1 1 11.1 Provide 3 27.3 2 22.3 transportation*/\ ..1.. Piggy back*A 7 63.6 5 55.6 Comm. Training/ 2 18.2 6 66.7 Train-the-trainert Cancer awareness 7 63.6 2 22.3 Destigmatize cancer 2 18.2 1 11.1 month Cultural 5 41.8 7 77.8 Senior programs 2 18.2 0 0.0 sensitivity*t Free screeningt 5 41.8 7 77.8 Surveillance 1 9.1 5 55.6 Passion/ 5 41.8 5 55.6 Navigationt 1 9.1 4 44.4 commitmentt Provider recomm. 5 41.8 1 11.1 Provider Training 1 9.1 1 11.1 encouraged* Reminderst ..1.. 5 41.8 1 11.1 Storytellingt 0 0.0 5 55.6 "' Successful outcome resulted (coalition) t Successful outcome resulted (cancer (center/acad .program) 1\ Unsuccessful outcome resulted (for one or more cases, in one or both groups) ..1.. Community Guide-recommended strategy resulted in significant change in HPV -related knowledge and intent to obtain HPV vaccination; and cancer center/university-led lay helper programs in Alabama, 116

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Mississippi, and North Carolina that educated and screened hundreds of rural AfricanAmerican, Hispanic and White women breast cancer (Note: Other lay helper programs are currently in development by cancer center-academic programs in South Carolina and Kentucky). The central importance and role of community education for increasing cancer screening also was evidenced in faith-based initiatives, mobile screening events, conferences/symposia, and other venues. Clearly, the role of community education as a key strategy for promoting cancer screening cannot be understated. A multiple-strategy approach was almost unanimously used by cases in both study groups in their screening outreach programs, with demonstrated successes in both groups. In these multi-component interventions, effective strategies included offering free screenings, primarily through referral to the CDC/state-funded Breast and Cervical Cancer Screening Program (in all states) and/or a state-funded colorectal cancer screening program (New York). Gas cards and other forms of provided transportation as an incentive for program participation helped reduce cost and transportation barriers. Small media, especially local newspapers, inserts in church bulletins and payroll checks, radio and TV, and especially word-of-mouth were found as effective strategies for recruiting people to screening programs and events and otherwise "getting the word out". The strategy noted as "piggy back"--in effect, partnering a screening program with another community initiative or event as a way to maximize attendance and recruitment and to sometimes intentionally offer a 'one stop health shop' --was reported as an effective strategy by more than half of both study groups. Almost half of coalitions and one cancer center-academic program used client reminders, in the form of postcards, letters, and phone calls, and reported them as effective strategies. At least two cases (one in each study group) also encouraged provider reminders; for example, using their electronic medical record 117

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systems to generate reminders for providers to counsel patients and reminder letters or phone calls to patients. Another especially important and effective strategy was to tailor programs, using literacyand culturallyappropriate materials, settings and facilitators (e.g., visual materials featuring "Mariana's story" and Spanish-speaking Promotoras in a Hispanic church for Hispanic or Latino audiences). Storytelling was reported as an effective trans-cultural strategy among the rural White Appalachian, Hispanic/Latino, and African American populations to educate and motivate people to be screened. Unsuccessful Strategies It is both instructive and useful to also examine strategies found not to work, as indicated in the table footnotes above. The most prevalent and informative, unsuccessful strategies found in this research will thus be summarized and illustrated, as follows. Looking back at strategies reported by individual cases not to work, the first observation is that strategies reported as unsuccessful were far fewer than those that did work; in total, less than a dozen 'unsuccessful' strategies were noted or found. Among these, didactic lectures in community education programs, especially those wherein community members had to travel to attend the event had very low attendance. Some large media strategies including TV and radio campaigns reached tens of thousands of people but resulted in one or two persons screened. Financial incentives also were not effective. Cash payments to participants in one African American faith-based program raised ethical concerns of potential coercion. "Canned programs" and required use of a "program template" that prevented little adaptation or tailoring (as in the Tennessee experience) were also found as ineffective. A second observation is that strategies that did not work for a few cases among the two study groups actually worked for most. In some cases, the unique mixture of 118

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barriers to screening in the community, characteristics of the target audience, and programmatic factors (including personalities of intervention personnel) can create a situation in which "nothing seems to work". The following vignettes from two coalitions exemplify this theme. The primary screening-related goal of the first coalition was to promote mammography in a variety of ways, as described by an American Cancer Society coalition member: Nothing seems to work for this coalition. We do a pink campaign in October for breast cancer, including decorating trees with lights and putting out donation canisters for the coalition. We identified non-compliant women and had them register to get on a van offered through the Healthy Woman [Breast and Cervical Cancer Screening] Program for a screening at the hospital during an afternoon. A local church donated the van. A CS provided money for lunch and the van and we publicized the event. We relied on the medical center to do the follow-up due to HIPAA rules and the coalitionfor word-of mouth promotion. Two local restaurants had information on printed placements, and information was in the local newspaper. The results were disappointing: only four women were on the van. We tried year after year to get the van filled and couldn't. Awareness may have been more of an issue than transportation. Also, participants had to give up time. The coalition decided to hold a spaghetti dinner and hand out brochures at an information table, but people weren 't interested in hearing the information when they were there to eat. For a colorectal cancer screening program we did, the [name of lead group] relied on our coalition to share information with community peers, but it didn 't get promoted. Five hundred placements were used to promote screening guidelines and the event, but there was no response. Techs at the hospital said they had no time. PAs at the hospital assured us that time would be given, but it didn 't happen. And at the big street fair, there weren 't any takers for the FOBT kits. People viewed them as unnecessary and uncomfortable. There was opposition to taking them. People here are 'scared to death about cancer. The coalition likes to do big things but not the hands on work. They won't spend the money they have but keep it in the bank. At meetings, I'm careful of my position because I'm there to support but not tell them what to do. 119

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The experience of a second coalition illustrates how a potentially effective "piggy-back" strategy can backfire and prove to be unsuccessful in some situations, due to a competitive attitude (lack of a partnership spirit) among community agencies: The Vo-Tech school partners with our coalition on screening education and awareness. We've done skin cancer screenings every year, advertised through a newspaper article: where to pre-register; walk-ins also. Screenings are held at the Department of Health, and we have very high referral rates. We always tie in one screening event to another event; for example, the Pioneer Festival Relay for Life. However, this year ACS was very upset that we infringed on their territory, so we won't do that again. This year we plan to tie in with the [other community name} event. From these examples, it may be concluded that program strategies that work in one community may not always work in another, depending on the unique barriers to screening and the constellation of people, organizations, and commitment or inertia of local institutions and agencies that exist within the community. The Findings Relative to the Community Guide's Recommendations for Cancer Screening As discussed in Chapter 2, the most authoritative research-tested, best practice cancer screening strategies against which this study's findings can be compared are the Task Force-recommended strategies published in the Community Guide to Preventive Health Services. As a brief review, the Task Force found sufficient evidence to recommend the following strategies for increasing access and adherence to cancer screening: For breast cancer (mammography): Client reminders Small media One-on-one education Strategies that reduce structural or physical barriers Strategies that reduce out-of-pocket expenses 120

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For cervical cancer (Pap test): Client reminders Small media One-on-one education Provider reminders Provider assessment and feedback Multi-component interventions For colorectal cancer (FOBT): Client reminders Small media Strategies that reduce structural or physical barriers For skin cancer (decreased sun exposure): Education and policy interventions in primary schools (children) Education and policy interventions in recreational & tourism settings (adults) Sunscreen use (in conjunction with both strategies above) For prostate cancer (no specific screening recommended): Informed decision-making Worksite interventions using the above strategies: Onsite screenings, health educators, and media campaign Reduced out-of-pocket expenses through employer insurance programs The majority of both study groups in this study employed one or more of these Community Guide-recommended strategies (Table 5.1 0), with impressive success in some programs' screening outcomes. Many examples have been provided throughout this narrative. With respect to keeping this narrative within a reasonable length without sacrificing content, the following discussion of the study's findings compared to the Community Guide's recommended strategies will primarily focus on those relative to mammography screening. Client reminders in the form of postcards, letters, and phone calls were used by almost half of coalitions and at least one cancer center-academic program, all of which included mammography screening. In New York State, client reminders are systematically generated by the newly integrated electronic system of the state-funded 121

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Cancer Services Program, which substantially helps to increase breast, cervical, and colorectal screenings among the uninsured, as reported by two coalitions that administer the program in their counties. A coalition in western Pennsylvania collaborates with a patient navigator at the local hospital who places telephone reminder calls following screening recruitment events: "The calls help to generate a 30%-40% return rate [of a post-test that assesses cancer screening knowledge and intent}. Referrals go to the hospital and then the hospital follows-up with the primary care physicians. The efficacy of client reminders and small media as part of a larger campaign to increase mammography screening was demonstrated in the following description, given by a cancer center-academic researcher in Kentucky, with supplemental information from document review: For more than a decade, the Kentucky Cancer Program (KCP) [a statewide cancer control organization operated by two university-based cancer centers} has worked with the state's First Ladies [governors' wives} to reduce breast cancer deaths in the state. 'Celebrate Your Birthday with a Mammogram' is a statewide campaign begun by the KCP, First Lady Glenna Fletcher, and {a health care utilization management and quality improvement organization]. Through this initiative, more than 150,000 women ages 65-69 have received cards on their birthday from the Governor's wife encouraging them to schedule an appointment with their health care provider for breast, cervical and colon cancer screenings. During the last two years, the cancer center organized 30 local parties attended by 2,600 women. The campaign also included TV and radio ads featuring the Governor's wife promoting free and low-cost cancer screening for low-income women through the Kentucky Women's Cancer Screening Program and Medicare. A social networking approach also is utilized: the birthday card message encourages women to bring a friend who has not been screened. At the 'party' event, each woman is given three birthday cards and asked to send them to three additional women. One-month follow-up reminder cards and a three-month follow-up telephone call are used to both encourage screening and assess compliance. 122

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In addition to birthday cards as small media, informational messages delivered in brochures and flyers (with some exceptions), church bulletin and payroll inserts, local newspapers, radio and TV (with some exceptions), display boards, and DVDs/videos were shown to be effective in increasing mammography screening. Small media has been an important and effective strategy in the TeamUp Tennessee's cancer screening efforts. In a pilot study, promotional strategies were employed to reach women with messages about the benefits of breast and cervical cancer screening using exhibits (39), newspaper articles (39), radio programs (29), and TV programs (5), resulting in 340,479 community contacts made. Cooperative Extension educators and county partners conducted 283 educational programs/events (mother/daughter teas, women's teas, African American church service programs, Women's Day fairs, church delivered educational programs, and health fairs), reaching 2,850 women. Overall, a significant increase in screening rates for women aged 50 through 64 was shown in all intervention counties, compared to control counties. In another project in Tennessee, visual aids were found to be especially useful and effective with Hispanic and Latina women in promoting mammography screening: We conducted focus groups with Latina women to learn how they wanted to receive information about breast and cervical cancer and for their review of materials developed by the Department of Health. We learned that the use of images and visuals not targeted specifically to Latinas as an ethnic group (not being singled out) was a more powerful approach with this population. So we designed the educational materials using silhouettes instead of pictures of Latina women, and rather than talk about multiple risk factors we focused our message on being a woman and getting older as the biggest risk factor for breast cancer. This was more acceptable and less threatening. At the same time East Tennessee State University did some research that validated our project. Our program used the materials during the four years of our more recent study, and they are now being used throughout the state. 123

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Most of the remaining Community Guide recommended strategies for screening mammography, including one-on-one education, strategies that reduce structural or physical barriers (e.g., mobile mammography vans), those that reduce out-of-pocket expenses (e.g., referral to the CDC/state-funded Breast and Cervical Cancer Screening Program) and worksite interventions using these strategies have been well represented in this paper. The recommended strategies for cervical and colorectal cancer screening have also been well represented. The one exception, provider assessment and feedback for cervical cancer-in effect, evaluation of provider performance in delivering cervical cancer screening and feedback given to providers on their performance--was not reported or otherwise found in the analysis. The value of evidence-based programs and the Task Force-recommended strategies are clear. However, the findings also reveal that other non-evidenced based, 'tried and true' strategies used by outreach programs to increase cancer screening were found to work in the vast, rural Appalachian area represented in this study. Thus, it is not unreasonable to suggest that the strategies generated by, and shown effective through the passionate commitment and long-standing efforts of the eleven coalitions and nine cancer center/university-based outreach programs may very well be candidates for future designation as evidence-based approaches. Although beyond scope of this research, these community-based strategies represent important practice-based evidence worthy of further description and discussion. Summary of Findings In summary, comparisons between coalition and cancer center-academic outreach programs revealed similar but also differences in the definition of program success and strategies used to address barriers to screening. Cancer center-academic programs more often encountered system-level challenges, such as an inordinate 124

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amount of administrative requirements, too little funding and staff and difficulty in obtaining screening for undocumented (immigrant) groups. In contrast, coalitions appeared to be challenged by more individual-level barriers, such as difficulty in tracking follow-up of abnormal screening tests, competition from other community organizations, and lack of provider recommendation of screening. With regard to the ways in which the two study groups defined program success, the most common definitions to both groups included the number of persons screened, diagnosed and treated early and increased program capacity. However, cancer center-academic programs more often defined success in terms of population based, long-term cancer health outcomes (e.g., decreased screening rates and disparities, increased sustainability); while coalitions more often cited individual level, short-term outcomes (e.g., "one life saved", increased knowledge, number of persons screened per event) as measures of success. This same pattern was observed for funding sources. While both groups almost unanimously named the CDC/state funded breast and cervical cancer screening program as the best funding option for breast and cervical cancer screening, cancer center-academic programs tended to list large, population-based and institutional-level funding agencies as funding sources (e.g., Susan G. Komen Foundation, business/industry, state legislature, cancer center, university); while coalitions identified more local, community-level sources that focused on individual behavior change (e.g., small grants, donated time/materials/sites, American Cancer Society, fundraising). NIH/NCI were named by both groups as a major funding source; however, it is likely that for coalitions this meant NIH/NCI funding provided to the Appalachian Community Cancer Network, with which all 11 coalitions are affiliated. A similar pattern was shown for use of theoretical models and evidence-based approaches. A large majority of both groups reported successes in using community125

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based participatory research, social networking approaches (although more so by cancer center-academic programs for the latter), and Cancer Control P.L.A.N.E.T. However, coalitions used less theory (primarily Tell A Friend and targeted mailings) and more evidence-informed strategies overall, while cancer center-academic programs used more theory and evidence-based programs in general (e.g., Witness Project, Body & Soul). Finally, both between-group similarities and differences were found for communityand trust-building strategies, choice of intervention sites, and other specific intervention strategies. Effective strategies almost unanimously employed by both study groups included community education; use of a multiple-strategy (multiple component) approach to meet the specific needs of the target audience; community involvement in program development and delivery; and primary care clinics as an intervention site. Both groups also piggy-backed their programs onto other events (coalitions more so); targeted multiple conditions; and hailed passion and commitment as a necessary strategy. Coalitions, however, more often reported partnerships with organizational champions and successful use of individual-and community-level strategies, such as unpaid community volunteers, small media, reminders and encouraging provider recommendation to ensure completed screening, with programs delivered through mobile screening units, worksites, schools, health fairs, and county fairs. Cancer center-academic programs, on the other hand, used more population-based, formalized approaches and larger organizational partners including faith-based and lay helpers programs; paid volunteers; and community member training (including train-the-trainer programs), with greater program delivery at churches, state health centers, and cancer centers than coalitions. Finally, the data in this study demonstrate that multilevel approaches to cancer screening (Study Proposition 1 ), with involvement of community members in the 126

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development and implementation of those strategies (Study Proposition 2) can effectively overcome barriers and increase cancer screening in rural communities. However, the findings also indicate that strategic deficits remain among community based coalitions and cancer center/academic outreach programs for achieving their cancer screening goals. As next described, a best practices cancer screening model is proposed to strengthen and assist these outreach programs in attaining their shortand long-term cancer prevention and screening objectives in rural populations. 127

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CHAPTER6 PROPOSED MODEL, FUTURE DIRECTIONS AND CONCLUSION Utility of the Conceptual Model and Changes Suggested by the Research The conceptual model that guided this research (Figure 3.2) delineated the multiple levels of factors that can facilitate (predict) or impede (create barriers to) cancer screening, which when addressed through participatory interventions using health behavior models and strategies to overcome those barriers can contribute to health behavior change (screening) as a proximal outcome and to longer-term decreases in cancer morbidity, mortality, and disparities. The findings from this research corroborate these assumptions. The data also show multi-strategy approaches as a particularly effective strategy for increasing cancer screening in this study's sample of rural residents. This finding is consistent with the literature that multi strategy (multiple component) interventions are more effective than any single intervention strategy alone (Sin & St Leger, 1999; Sebaldt et al., 2007; USPSTF, 2007). Further, evidence-based programs such as those listed on Cancer Control P.L.A.N.E.T. (e.g., Witness Project, targeted mailings, Tell A Friend) and evidence based strategies recommended by the Task Force in the Community Guide (e.g., worksite programs, small media, patient and physician reminders) were found in this study to decrease barriers to screening and increase screening behaviors and related outcomes, including knowledge, intent to screen, and primary prevention behaviors (HPV vaccination, tobacco cessation). Thus, the utility of the study's conceptual model was confirmed by these evidence-based approaches and other successful strategies, which collectively suggest a best practices model to enhance the design and delivery of cancer screening outreach programs in rural communities. 128

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The Proposed Best Practices Model of Rural Cancer Screening The proposed best practices model of rural cancer screening is built upon: 1) productive interactions between community-based coalitions and cancer center academic outreach programs, input and guidance from the community, and agreed upon definitions of program success; and 2) strategies that build program capacity and engage community members in cancer screening (Figure 6.1 ). Cancer Center-Academic Outreach Programs Program-Related Strategies Mission & Program Foci Capacity-building Strategies Theory-based Models Evidence-based Approaches Community Education Policy and Healthcare Systems Change {Funding for screening) Community Coalition Outreach Programs Community Engagement Strategies Trust & Relationship Building munity Involvement Recruitment & Retainment Strategies Community Education Individual Health Behavior Change (Cancer screening) Health Care Provider Behavior Change {Screening recommendation) Long-term Health Outcomes (Decreased cancer incidence, mortality, disparities) Figure 6.1 The Best Practices Model Of Rural Cancer Screening (Kiuhsman, 2008) 129

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A central premise of this model is that these strategies are specifically chosen to address and overcome systems-level barriers (to increase access to screening), healthcare provider behaviors (increased barriers to screening at multiple levels. If successful, change in policy and healthcare systems, provider recommendation and performance of screening, and individual behavior (regular screening) change will occur. Theoretically, in the longer term change at these three levels will lead to decreased cancer incidence, morbidity, mortality, and disparities. The model offers a recipe for increasing cancer screening in rural communities through collaborative interventions of cancer center-academic outreach programs and community coalitions. The first ingredient when beginning any new screening initiative is dialog between the two groups. As part of this dialog, a critical second ingredient is input and guidance from the community on program development, implementation and evaluation. Such input can occur through a community advisory committee, focus groups, and/or community opinion leaders. A third ingredient is a mutually agreed-upon measure (or measures) of success; in effect, the desired outcomes of the program or initiative. Congruent measures of success will help define program objectives, the roles of those involved, in program implementation, and the specific intervention strategies to be carried out. As the fourth ingredient, the strategies in the model are specifically targeted to screening-related barriers identified in the community. Program-related strategies are those that increase or insure the group's capacity to achieve screening outcomes, shown by this research to include defining program foci (e.g., use of surveillance data, assessments, and Community Health Profiles to determine community needs); leveraged funding; selection of theoretical models known to work (community empowerment and capacity-building, social networking, faith-based health promotion, stages of change); and evidence based approaches (programs on Cancer Control P.L.A.N.E.T.; Community Guide130

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recommended strategies). Community engagement strategies include: building community trust and relationships (community gatekeepers; cultural sensitivity to decrease community-researcher 'disconnect', mistrust); community involvement (lay helpers, students, translators as trusted community members); partnerships and networking (with hospitals, providers, schools, local agencies); recruitment and retainment strategies (going where the people are, mobile vans, gas card incentives to overcome geography and transportation barriers; one-on-one education to decrease fear/fatalism; free screening/referral to funded programs to overcome financial barrier; and using a multiple strategy approach to tailor a program, event, or health message to the specific needs ofthe target audience); and translation of models into messages that community members will relate to. The benefits of this best practices model are many. The model can serve as a template to guide program development and implementation; offers insights into ways that outreach programs and coalitions can learn from each other; and provides a roadmap for building program capacity and synergy for effectively reducing cancer morbidity, mortality and disparities among rural people. The proposed conceptual model could be tested in a two-group, quasi experimental community screening promotion study, in which the type of cancer screening(s) targeted and the main outcome(s) are similar (e.g., colorectal cancer screening among rarely and never screened persons; and/or change in health care provider recommendation of screening; and/or change in a local hospital or cancer center agreeing to provide follow-up care for abnormal screening results). In this hypothetical study, the intervention 'Group A' might consist of a number of cancer center-academic outreach programs and their community coalition partners which collaboratively: 131

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identifies a community advisory committee to participate and guide the intervention from the earliest planning stage through dissemination selects the specific theoretical model(s), community partners, recruitment and evidence-based strategies to address the specific barriers to screening and tailor the intervention to the needs of the target population; maintains a collaborative approach throughout all phases ofthe study. The comparison (control) 'Group B' might consist of a number of cancer center academic outreach programs in counties without a cancer coalition, matched to the intervention group on rurality, countyor state-level BRFSS data for the specific targeted cancer(s), and sociodemographic characteristics of the target population (e.g., race/ethnicity, gender, education, income). Strengths and Limitations This study was strengthened by a large sample size (by qualitative inquiry standards) of cancer center-academic and community-based cancer outreach programs across a large, multi-state rural region of the eastern U.S. (Appalachia). Validity and reliability were enhanced by using multiple sources of data representing a three-year time period; multiple key informant perspectives in most cases; and multiple interviewers who also conducted systematic coding and analysis of these data. Study credibility is enhanced through expert review, oversight and assurance of sound scientific methods provided by senior researchers experienced in qualitative and community-based public health research. The investigator's strong background in cancer prevention and control and community-based participatory research with medically underserved populations lends additional strength to the research. 132

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This study is limited in being observational and included retrospective, self-report interview data subject to recall bias. Despite some racial and etlmic diversity in the study sample and their constituent populations, the predominantly White population of the Appalachian region limits generalizability to other rural areas. Generalizability was further limited by the sample of coalition key informants as representative mostly of Appalachian Pennsylvania and New York. The qualitative, interpretive nature of this research may have permitted interpretation bias in the study's analyses. Implications for Future Research and Practice Some of the many valuable lessons learned in this study for future research and practice are as follows: 1. Greater dialog and feedback between cancer center-academic outreach programs and community coalitions provides an opportunity to learn from each other and develop strategic plans and collaborative programs to overcome both program related barriers and the barriers to screening among rural populations. 2. However, community-academic partnerships need to be systematically integrated into the mission of major academic medical institutions to achieve longer-term and sustained cancer health outcomes. Such partnerships can serve as a feedback loop and pipeline for outcome data to cancer center-academic programs and funding agencies. 3. Research-tested, evidence-based programs and strategies can increase cancer related knowledge, first-time screening, and repeat screening among rural residents. 4. Despite the paucity of recommended, research-tested (evidence-based) interventions and strategies, both community-based coalitions and cancer center academic outreach programs have embraced these methods with demonstrated success. In addition, coalitions can help generate important "practice-based" evidence that may result in improved screening among rural populations. 133

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5. Many community coalitions that use evidence-based programs and strategies are not familiar with health behavior theories and research evidence underlying these approaches. Providing basic training in health theory and evidence-based approaches will reinforce their use of these methods and strengthen their grantwriting and fundraising efforts. In addition, many cancer centers are not familiar with effective methods of community engagement and would benefit from training in community engagement approaches to strengthen the reach and effectiveness of their work. 6. Institutional commitment to cancer screening as a priority area is crucial for improving cancer health outcomes in rural communities. Institutional support for local academic-community cancer control partnerships can be a cost-effective, mutually beneficial strategy for both the community and the institution. 7. Leveraged funds and mini-grants channeled to community groups can increase outreach capacity, cancer screening rates, and sustainability of programs. 8. Both cancer center-academic outreach programs and community coalitions suffer from chronic, inadequate funding and staff for achieving their cancer screening goals. Additional funding support is needed from the National Cancer Institute, state legislatures, and other funding agencies if reductions in rural cancer disparities are to be made. 9. Mobile screening units (i.e., "going where the people are") are highly effective for increasing access and screening adherence in rural communities. As many rural communities that once had a mobile screening van no longer have this valuable resource because of lost funding and staff support, there is a need for greater funding and health systems change that support mobile screening vans in rural communities. 10. Although provider recommendation is known to be a strong predictor of screening compliance, lack of provider recommendation is a persistent problem in rural communities. Programs to increase physician recommendation should include complementary efforts to help physicians and patients address socioeconomic and other barriers to cancer screening. 11. Community trust is absolutely essential for rural cancer screening programs to successfully achieve their recruitment and retention goals. Pharmacists are among the most available and most trusted professionals in rural communities and 134

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therefore can serve as agents of change in local cancer screening programs. Partnerships and networking with Department of Health immunization nurses and researchers with a long history or close relationship with the community, other community champions, gatekeepers, local health care providers, and community agencies can facilitate screening program success. 12. Program strategies that work in one community may not always work in another, depending on the particular barriers and characteristics of the community. Tailoring programs and use of culturallyand literacy-appropriate approaches are crucial for meeting the specific needs of people in rural areas. 13. Passion and commitment among program staff and strong community partnership networks are crucial to increasing program capacity and achieving increased cancer screening in rural communities. 14. The data in this research indicate a long-standing power and class differential in Appalachia as a more prominent issue than race and ethnicity. The strong pushback statements of community members in this study against medical hegemony suggest an area in need of further exploration in future research. These power issues should be examined through future, in-depth study and analysis. Conclusion The context of people's lives determines their health behavior and consequently their overall health and well-being. This study provides a glimpse into the lives and struggles of everyday people living in rural areas and extraordinary insights into what public health practitioners can do to help improve the health status of our rural communities. During the telephone interviews conducted for this study, several key informants commented that the interview questions and dialog during the call helped them think about their programs in a different way and stimulated new ideas for planning, implementing or evaluating their interventions. The coding team created and coined a new thematic code from these recurring statements, 'INTERVIEW AS MUTUALLY BENEFICIAL TO RESEARCHER AND KEY INFORMANT'. This single code perfectly mirrors the value and strength of the community partnership 135

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approach for improving cancer-related outcomes in rural communities. We as public health workers and researchers must not only acknowledge but honor and fully embrace the community perspective and involvement in our rural health programs. In doing so we will gain a deeper understanding of the place where science and communities can and should meet to best serve and preserve the public's good health. Dissemination Plan The findings from this study will be disseminated to the cancer coalitions and center-academic outreach programs that participated in this research; the University of Colorado Denver, the Penn State Hershey College ofMedicine, and the National Cancer Institute that helped make this research possible; and to the public health community through a journal manuscript and conference presentations. 136

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APPENDIX A HUMAN SUBJECTS APPROVALS University of Colorado at Denver and Health Sciences Center Penn State Cancer Institute Scientific Review Committee Penn State Milton S. Hershey Medical Center College of Medicine 137

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To: Bn!nda C Kluhsman From: UCO 1-bnan Subjeds Resean:h Carrmdlee HR5C Pralocol 20118-010 Revi(APP001) 1st Rl!vielltf>anel: EKpedib!d I Piln"l X Review Dille: 'Z1 August 2007 Requin!s M._. Modificiltions Tille: WOSEIICENCE CCO.WI*ITIBS IEE'T:A ODNPMATIIIE CJOIIE IIT\JOY OF cmM.HTY COIIUT10N AIID CNKlER TOCI\NCEA .. o .-lNO ILIIW.IE!IIIJB'f1tl R2lliewer sees no problem or risks in h! prab:d arw:l consent. but cha"9"5 in lhl! pmb:al andlor IDt5l!rtl farm liA! .-.dl!cl. Thl!5l> ""' dl>sailed in till> and I1!ViE!wl!r caml'l"'l!!''!s. Thl> praposal wil nat t... l6ltilllese ct..1ges an> ,.....lnf a &n..ly review. please pnMdl! a -r ll>ttl>r Ill each i55UI! h! asla!d yau tD adcftss_ Plea,... providl> capy af lhl! F'nlb:oiiPn:lb: Swnnwy rlf andlor ean-.t Form (I wilh tigl oiV lEd d>Bngl!s. and a dean copy af lhl! oansenl funn tor lhl! Co--018-svum-. If lhl! 11 iDCificaliaiiS an! nat n!CII!ived in COMIRB IJ1 T UK day, 25 December 2001, your prtJIDcol wil be WITHDRAWN. No l'l!5l!&d1 lliCiivities ""'Y begrl on lhis promcgl .nil &\Ill ...,..uval is I1!CI!iva:L eom.n..nts: PR)_ 5. Explain whelher _, and minoriies wil be ncludl!d ID demaustlabe t!qUilabk! se1ec1iDn of study 138

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\iS ,,,,l I; Cancel-Institute r-enn S.:Ltt '\f.lo:a rln.nt\' ,.,: .. .. D!".'-e.:Ja:o.:! PO. n:l).lil:!r. t'.'l. ,,.,_,_:_: 'Tel ::; :-, u:::; .'.L't: ::1 '.'.-'':IIUrt . Date Review: Scientific Review Committee Notice of Review July 31. 2007 Protocol ID: Principallnve5tiaator: Reviewer: Discussion: Joseph J O"abick, IVD, FACP. Chaor Where Sc:ier.ce and Communities MtJet: A Comparative Sluay of Community CoalitiOn ana cancer Stl8tegies to lncmase Canoer among Ruf'al Residents Brenda KluhsiT'an, MSS (HMC FHS) Review The abcve referenced study has undli!1'9Qne Admini5trative Review and is APPROVED by lhe ScientiFic Review Committee to proceed to IRB submission, ir applicable. Prepared/Saved 07. 31.07 139

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PE:\NSTATI Medical Center College of Medicine H,rr11111-n ... P'MI .. 4)NiN. 1< .. ,.,,_ .,;rMil' C\:-G-t.::.: .I/ j,;,-,Jit; ,. :\.;;..:, Sloll' lolili..l:l 5. :i;J>L;.., :.ft:liO!l C:urt< S:':.'"la rtv.-.:...Wn OJ"L.:,;. -'.!' J ... .-.-,i""''J'Jri"'' f\1;.:; J ... urnl: ""-'""'.lrtlt'.p:tl.twt.ir,l' DATE: ;k:L..:y. r_.:..,. TO: FRG:I.1: Dn:wld Klu::..:.wan. Ph.D.,l'110,li<' (IL\K} X.:v:U M'J)., C'1air R;:o,i""" !0 r':: In>! T.'ltinr.AI HMrd (LRH_l :O. the .. l'h.:> Mi'lit) "";).5 l..::ccu..:d fo: ..:xcmp. srr.IUR m the ;>r.licic ofthia a.-.d the prm.'ii"'"' r.7 ,,ons ll 'd, !!!.:l,m"tred., f:-r.J.nd.w'l! to fo:ltlai-[RJJ revi::w tbe Th" critcri t'r.T :=:o:e;n.n T::lli:I:T'ci: accL1'.'1iin;,: :1> he fL:Jiow:ng :,_ :h.: c." 45 CFR 46.1(JI(b)(2} in'thil:,; lh.to cf '-'lm (oogn::6'o!. Lnty pru<:(U..:rc:!, ::LL::.r'li(w '" oJ!uval.i.:oil IJ! p'l...blli: unl.::ss; (i) i.I.:::.r:-..14tiau ob!r-.in.!d is :e::.ll'C.ec'. i.n such f. muwer th!.t lll;mm IP.1bjc::n .::an 1Jc rn: :h\:oug::>. :ir.lr.ei oo tbe ( i:) w ny l'hc' of n:-i1an5c mt5lde j)f. r'. nn: rc!n<>nahly ? the Rubicct at riak af ::r.dru.l OT c:vil liability :Jr J: c':'lmal;ing f'mn.::.ia crop ar !'!',\;., mac 1':0'1' inc/ll{.:'c ,. ... i.<"t)l'!c'r., ,.,; :-lJWi :lc:Ll'nllilloll:o:t Wo1S ;.c: iU.. = ..... I[(Ji i.e. Tb.1 'lt)J,l fi)ll;:owi "f.: 1 Sum ...,('!")' Kc:y JnfU:ul<.tL. 07 ... 27/!00'7). Tht: :1:1.\1\: i.J:.,ch,cU:v u,hdL. () j e;J'J;-IS in T'C'.iC't'' .:.ct::mni:-11-:io: .. Ra.r.'n :,;$ u l'lf IKH reo.i::w a!'lli m eo.:::mpt Sc.i= irvohi')(;r ri '11< 'l:' 1chiects ()T (x;cur u o:" i" :.:L;:ar: m1y :n ::;=:;h acti'lily lhm Ill<'.;-.il'oe'. LlJii ab:re. l'Lt a:'.d rcp:J la:ivnR thll!.ll
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APPENDIXB KEY INFORMANT INTERVIEW Qlflu Uu o..(f Sujtd N...t.er. F-E: GIWI)I: Informant Hello_ This :is IINTER.VIEWER NAMEJ at thr Pam Stair College of :MediciDe. I'm ailing to Jete our abcrut c:aJttS Jtratr used eoalitima oul:reac:h Is tJm STn.L A GOOD TIME to compleft tile iaMvinr? 0 Y&L. [CONTINUE) 0 No .... [SCHEDULE CAllBACK TIME]: Datr ___ / ___ 1 __ AM I PM BeftJn! 1R begin, I'd like to thmlk you for your williDgDrss to putil:ip* md briet1y :m.'iew thr project Thr purJJOR of this iD1rrview is to assess stmegies used by collllllllllity coalitiDD!I and c:mter outreach programs to iiK:mlse CaDI:el" screeDing Ullllllg rural residmb dming the put 1 yean. Aboul60 iDdividuals will pmicipatr in thr study. Thr intrrview will take about 35-40 mimrtl!s. You may refuse to answer any question and eod your puticipatioo at any time. Your ideol:ity will be kept completely cCMJfidrnril and will DDt be sbmM with my011r, 01" in my publiaticxa or pa:semati011 resulting from thr lltlldy. The infi:Jo:mtion you share will be DOt be codM or in other wa lmled. to oar -Do you lmft u:y gaesticms? [ANSWER. QUESTIONS] Do you pvr ,..... aJURt to e-n.-w:ida th iateniew? 0 No ____ 'I'bmU: yuu far your timr. [HANG UP] 0 l'G [CONI'INUE] Do you pvr yo.,-ecgpjpjpp fpr tiPc iltmjq 'P Its tev ggmlctl? 0 No .... OK,hrill...-riteyour iastead. [CONTINUETOQ.l] o lc [TURN ON RECORDER; 1BEN CONTINUE ro Q.l Begia Time: D D; DO am /110 141

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Key lnfoJ"ID2at Interview Qaestioas [JN'IEI.VIEWEL El.ilam C1D aBp!lld IIIBM!i.,_ illlll]nbes 'bUw. m mu-...mm .... --.af)Pdirpm' ..... --.] I We In! iDirzestm iD leamiug haw c:mcer SCRelliDg is being pomoted iD nnl ammnmities. I. Bow wo'dd yov. describe you [aMlitioll'sf [outru.clt serviu utL ia tft'Jas of its gfOCraphy IIH popv.latiH (Underistin'! Probu: G.Nralfoam011, rurality; RadJll/ ctlllliC JIKlklr-llp EdJJcatioNJI. & pt1VWrly lffllls; Industry wltitrl-collm) 2. Plnsr trll-abollt yom [CDGlilitHI'sf [outrl8l!lt prugra11t 's] aDar K!'ft!im: efforts witll nl1"'ll raidmt! past 3 ynrs. Targc nualaudiea(s) TYJMS of unt:tll' trzrgad; Whmr scralli11p oct:rDnJd F'II1Hii1rg SOIO'C&t (NIH, ACS, Stat. lNpt. oflhtJIJh,foiJJIJltJtiDn.s, tile.} 3. "' .... lw VO!!' role bef'D. in dtesr Kl'ftllial: efforts? Prob.s Poruionlllllllhrsltip rol in [cotJiitiCRI] [DiltnJtJch progrtllll] Ungth of SllrViu wi1h [ coaliti011] [ autretJt:lt progrrtlff] PrUruu} t/Uciplinfll profcsiCRI Rol in illl'lnwlltiOPIS .f. Bow wo'dd ya describe dar types of caDHI' K!ft!ig straRgjrs your [ctMJiliofl] {JKDgrallt] luis .sed witll nnl residellts over tile past 3 yean. Prow: WJrylltow the stramgic .....,., How COIItlffllllit}' Wll.f Mgapd; trwt fitllbl.islt.U built (.g., corrmnority clumrpion ifhntiji.d); PDrlicipalory approacltti; mw of stabholdttr imulNM.m lWcTvimM1II strategies HZltlt Whavior w;.d Evidan-bas.J stratflgiw progrrzms Wil ExampliiS (.g., 11tobil6 SUftlli1lg IDiiti, pamtfii'Ships wlloc:al clirticslhofpitalslagencics; m.) S. Cu yov. p1nse drscribe tile b!Jrim to sucsr Krft!lig ia you nl1"'ll lllldltow yov [eotditiort] /pr, ... ] bs adllrnsed those bllrrirn iD. yov.r Kl'ftlliac mmvelltiou? Prow: Rasourus (fl.g., tnmrtDJCfll financial com/ JKIWirl); IHialth carw facilitic; phymiart:r/ph)'riciart NJW11t111artdllti011 ofsawnirtg; trrmsportzJJim; tc.) KlrowlMJgfll attiJJidw beliefs (.g., eduealionllitrlracy; canatr fatDl.ism; mytlu abmd eartcl!l'; fltc) 6. Bow does yOUJ" [Cf1Glitio11] [lllllnlflci prvgr..,] ttm. saa:ess ia you r.nl, atKft' scrft'llillc batrrveatiou, llllll how wuaJd y011 clesc:n"'be tile ohOUJ' prom!!'s n.c:er !f!'!'!!!ipg .E!I!!m in past 3 ynn? Probfls: MIIQSUI'IIS of success Ra.wn.s str'atflgiiiS liWW Exmrrplc ofsuca=fol I'IIIISUca=fol strur.gic Nwnbftl' ofPfiTSOIIS TJ''lit.JI diagnos.J JnfWilltCfl ofjimdirtg SOIU'I:fl aJtd jimding lflwls 142

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APPENDIX C DATA CODING SHEET .... licii* ... 1): D Co.lilian __ Coderllniti*:. __ D Cmc:er Cerdllr FINAL CODING SHEET c-. Read ftaugtllrOI'ISCrtled....,... As lheml!5.., idlrilil!cl. .-a rain pen 111 ,...., r8eor.int aJdos (stin IBM)...,._ thai text or segrnerC ul-an lhe lnn5c:r1ll Tiel liD '-1< haugh lhe Dlsailed in8view n use tlis tarm 111 sun.nanze.., 11r ....... "" CIIIIMIXI"d"'a bala!s belaw. Use rVIt nagr,s spaa!!S) 111 wrill! liekl W,. uw hs coding shat n lhe-015aip!ID ......... 1ar Ndo .......... OjH 0 Educab!d Pii!OI* o other: OTHER ECON (Jill):--:---::-----llep!!tEb!icily [add %, if reported) c While WHITE C Blacll BLACK c Asian ASIAN c AK Native/ American ll'lcNn NATIVE AMERICAN c JirRian/Pacjjc Islander HAWAIIAN/ PACIFIC o Amlhl Mennonite AMISH/ MENNON c Hispaniclllmno HISPANIC/ LA TJNO L other: OTHER RACE/ ETHN (list):----fh1pp [lldd %, C Lese than high school
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Data Coding Sheet (cont'd) 10: SDAlEGIES USED rm C Co111111lrity Educalicn'Awareness COMMUNITY ED c Provider Educalion PROVIDER ED Illillill c Comrruity Trailing :J Provider Trainng (CME) ;: Tlllil-the-Trainer: COtiNUNITY TRG PROVIDER TRG TRAINTHETRAINER :J Corml.lnily Asseament ASSESSMENT :::: Canmunily Involvement COI.WUNITY INVOl VEJ.NT :::: Corml.lnily CHAMPION :::: Corml.lnily Gatekeeper GATEKEEPER (lilt): __ :::; Corml.lntty Empowennent EMPOWERMENT :J Focus Gruups FOCUS GRPS u Incentives INCENTIVES 0 Child Can! 0 Food 0 Rnanoa 0 Gas Card 0 GiftiShapping Ca.U 0 other:. _______________ :J Long HiiiDryiRelllticnii1Js LONG HXI RELATIONSHIP o OrganizJdion Champion ORG CHAMPION :J Pllrtnenhipsl Networting PRTNRSHPSI NTWKG 0 ACS 0 Anoa Agency on ... II 0 BCCSP 0 Cl'&on:hes 0 Coop. Ext. 0 DOH 0 Prvvido!r.; 0 NAACP 0 Ullns Club 0 CRC Program :::; Other OTHER ENGAGE (list):. _______ m ... :-c..........., B=R"W' "'r'ni" :J Body & Soul BODY & SOUL :::; Cllncer PLANET/ RTIPS CANCER PLANET :::; Cornrnulity Health Profies CHPS c: (geneiBI) EB-GENE.RAL c T.-ge&l Mailng TARGETED MAIUNG c Tell A Friend TELL A FRIEI'V w The Coi!VIIIDty Guide THE GUIDE :::; Wilneu Projed WITNESS PROJECT :J WllfTBI to Woman WOMAN-TO-WOMAN ;: OCher OTHER EB (lilt):. ________ !l!earie!lllod!!IIJFd c: Co111111lrity-Based Pllrticip.Researdl CBPR :J Cornrnulity Coalition Action Theory CCA T :::: CorrmuVty EmpoMmlellt Model EMPOWERMENT ::: lay lieiMth Advisors Model LAY HB..PERS (Q.I<.Q. 'tAy" Moftl) :::; Heallh Belief Model HBM :::; logic Model LOGIC Precede-flroceed Model PRECEDE--PROCEED Social-Cognitive Theory SOCIAL COGNITIVE Social NetworU1g Theory SOCIAL NETWORKING Tranalhearetical (Stages of Change) T1lll OCher OTHER THEORY (lilt):. ___________ ITRAlEGIES USED Qllw'k*"*e c Advocacy/ Policy Ct.lge ADVOCACY/POLICY c Align w/S181e cancer Plan ALIGN STATE CCCP c Capacily-Buidng CAPACITY-lll.DG c:: Cancer Awareness Monlh CA AWARENSS MONTH c Cc1rnnuWty VOU!Ieers VOlUNTEERS c Cultural Sensitivity CULTURAL SENSJnVITY c Demystify Cancer DEMYSTIFY c Destignwtize cancer DESTIGMATIZE c Evaluation EVALUATION c:: Focus on t Access INCREASE ACCESS c Focus on Disparities DECREASE DISPARmES c Focus on DilllemlTIWWIIIL DISSEMINATION c Focus on Swvivolllhip FOCUS SURVIVOR c Free Screening FREE SCRNG c Go Wllere the People Are GO TO PEOPLE c GROUP INTERVENTION c t.y Helpers LAY HB..PERS c Leam-As--You-Go LEARN AS YOU GO C low literacy Mllb!fials LOW UT MTRLS c l.ln:h & lean LUNCH & LEARN :: MD Speaker MD SPEAKER c Media MEDIA 0 0 CIM.orch BulleW!s 0 Paynlllnserls 0 NI!W!ifiiiiiO!i" 0 Rmio 0 TV 0 WonHIHnaultl :::: Mili-GnmbiiD Convnlftly MINI-GRANTS J Multiple Strwlegy Approach MULTIPLE STRATEGIES (fDT any llintJir' ewnt} :::: Qne..on..One Approach ONE-ON-ONE :J Paid VollmeetWSiaff PAID VOlUNTRI STAFF D Pauion/Comrnitment PASSIQH..Ce>.-RWIENT :::: Piggy-back on other E\leflt PIGGY .SACK :::: ProYider Recomnendlllian MD RECOMM :::; Refer 1D BRCX Scrg Prog REFER 8CCSP :::; Refer 1D CRC Sag Prog REFER CRC PROG :J Reminder CaiiB/letten REMINDERS :::: Repeat Event REPEAT EVENT :::: ScheduleiScnen on Spot SCHEDULE ON SPOT ::::Short-term Pnljec131Gains SHORT-TERM PROJS c Serior Prograns SENIOR PROG :::: SUrwy/Q'IIireiAsseament SURVEY 0 Comnulily Needs 0 Kna.li!dge/Betwvia<-0 R1!511Un:es ;: SuMlilance SURVEIUANCE D Tailored Approach TAILOR ;: Calditions MULTIPLE :J Techrical Assilltance TEO! ASSIST u other OTHER STRATEGY (list): .._., '1111111 (Gobol:lr ..... ............ cmdM ... ) .... d...,..., (Go liD'"'"""' cloc:umenl; add diUIIe ...tl!risk" ..... tD codes..._) 144

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Data Coding Sheet (cont'd) CHILD CARE 0 Co1111111Dty Distn.at/Resisla-lce TRUST/RESISTANCE o Colt/lklir-.uredllJndet'ntured COST/INSURANCE lJ DiscDmect: Comrulily-Rele&l:h DISCONNECT o EVIIIualion Dilfia.ll EV AL DIFFICULT lJ Few Vllbl Lack Medical 'Home' FEW VISITS o DillicuiU Not poaille FU DIFFICULT 0 TI"BB:king 0 Dlc/T o mtna1no hwys) 0 llleglll status 0 Mi!Jwlt Movement D lac:kJI)iltllnce ID H. C. Faciilies o l..d O!g Capacity o Low Rembursement Rates c Male Gender D No Screening C Perceived Vlllueltluality o Pf'ag!Bm Tilling 0 PnMdedAgency Competition o Provider Doesn, Recmmend D Provider Resislln:e o Provider Reverence 0 Provider Sl1or1llge GEOGRAPHY IUEGAL STATUS TRANSIENT LACK FACIUTIES LACK ORG CAPACrTY lOW REIIEURSMT MAlE GENDER NO TXJ NO SCRG VALUE/ QUALITY TIMING COMPETITION NO RECOf&Boi>ATION MD RESISTANCE MD REVERENCE MD SHORTAGE MD TOO BUSY o ACCNI NACN ACCNI NACN c ACS ACS l' AHRQ AHRO c CANCER CENTER CANCER CENTER c CDCBRCX Scrg Prog CDC-BCCSP o CDCother CDC-OTHER IJ Depar1ment ot Defenae 000 o Depar1ment ot Health DOH o FOinlation (nat KalwfV1..AFl FOUtoVA TION D Flnllnlising Evera FUNDRAISERS u Gnmtll(nat GRANTS c Lance Armslrong FlUid. lAF c NIHINCI NIH/ NCI C State CRC Pn91lln STATE CRC PROG c Su.., G. Komen FOIRI. KOMEN rJ Donllled Caah DONA TED CASH c Donated Tme DONATED TIME c Donated Facfies DONATED FACil D Donaled M&Erials DONA TED MTRLS o Olher OTHER FUNDING ilt : : RoleiPosiion ROLE (list):------o Provider Too Busy o Recruilmenl DilicWt RECRUIT DIFACULT 1---------------o Screening Not a Priority NON-PRIORITY 0 Audience 0 Provider.; TRANSPORTATION UNCERTAINTY : Tme with ROLE TIME: ::: TIBIWlg/ Dilcipline DISCIPUNE: ____ o Iii certainly Sc:mg. Guidelnes 0 Olher OTHER BARRIER (lilt): BEUEFS EMBARRASSMENT FATALISM FEARIDENW. NO KNOWLEDGE LOW LITERACY NO SYMPSI NO SCRG STIGMA o Client Satilfactm SATISFACTION o Deaelllled cancer Rates DECREASED RATES R C lnaeesed Capacity INCREASED CAPACITY R o lnc:re&Md Knowledge INCREASED KNOWLEDGE R 0 Increased SuaiMiabillity SUSTAJNABIUTY R o NUMBER SCREENED R rl Prc9Bml NUMBER PROGRAMS R 0 RelldleciiRecrUie NUP4JER READiED/RECRUITED R 0 One PeBOn Educ'dl Scm'dl Dx"dl Tx"d ONE UFE SAVED R o Quality ol Ct!lel Equal Access QUAUTY/ EQUALITY R o Time: In nosistoTrealment TIME: SCRG-DX-TX R p p p p p p p p p p IPioeqa :liti*J; Aljw-llilioaaw,l o tReaU!ed tRECRUrTED (......_,t.e.t IIIINrl...__,aa _..llllliDGIIEs,l o IB>UCATED tsCruDXJTX------------------------------jOg. 18ll!t .T ...... irllalliialafiQIIe=...,,-. ,_,._.,..,......iiiR tNI wmflt) l(j t'MDDtina Orulllnlliulillnl MDOPTERS fOv. OTHER OLITCOME 145

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Data Coding Sheet (cont'd) __ OTHER EMERGENT TIIEMES (Not listed aboVe): SUCceSSfUL S!RAJEGES-lMStJCCESSEUL S!RATEGEsaa SALIENT QUOTES (Highlight in yelaw on tr.lnscript and summarize here): Pv I I Quote: 146

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APPENDIXD KEY INFORMANT RECRUITMENT MATERIALS Cover Invitation Letter Consent Statement Interview Questions Acceptance-Refusal Form 147

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PENN STATE [Ihte] Dear [Ms] [Mr.).: Cover Invitation Letter IJI!par1ment af Pubic Health Sciences Penn 511* ec..ge af Medicine The Millon S. Hershl!r Center P.O. Box 855. A21D 1-!er.;hey, PA Vaicl!: (717) 531-7178 FBII: (717) 531-5779 As you DillY !mow, cmcer is a leadmg cause of death i:n the U.S., secODd Dilly to heart disease. CllllCa: does not affect all populatious eqaally. Some gnrnps, iocluding people m-iog in f1llll1 arMS, IliCial md edmic minorities, md those without iDsuruce O too little iluuzuce cow.nge, are at risk to be diagnosed with CIIDCU, to have a more actvmced stage af disease, and to die from cam:a:. Regular screeui:ng md early detec:tion is one of the most impcxtant tbiDgs people can do to n.duce their dwu:es of dyiDg fi:om cancer. Yet, saHDiDg rates IIIDDIIg disadvama.ged people, espec:ially in f1llll1 area. A of the st:ra1:qies Chat efledive in getting people sc:::r-.ed is Deeded if the death rates from ciiDCel" amoag f1llll1 md other cli.sadvmlaged populations are to be reduced.. I am writiq to illnte yon to participate in a rewan:h st.dy. Tbe pllllrJIOR of th stady is to nalaate strategies IISed by ponps ud caDCn cmter ontreac programs to promote caac:er screea.illg among rnral resideats. If you participlde, an inR:rviewer fi:om the Peo.n Smte CoLlege of Medicioe will cODllct you md schedule a cODWDient time fm you to compietr a si:ngle, 35-40 miaute teJephoJie 'The i:n18view will ask about stntegies used by your coalition or cmta: outreach prognao in your SCReDing iatrn"elltioos clariDr; the past three years. Please IHd the eoclosed Expluudion of Resean:h. After urefaD.y readiq IH s ...... ry, please COIIIplete ud retam ... .l!!!!l!k Acuptanc:e/Refas.al Form in .. mvelope provided to iadicate wta.dter or not yon wish to tab part in the stady. Thank you very much. Siocerely, --l /-+\.,.L.c_ _., ,. __ J ......_ ...__ Brmda C. Kluhsman, MSS, PbD (ABD) Principal lnvestigatO 148

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Consent Statement IRB Protocol No.: ZOCJI8.410 UI!Mnity of Cokndo at Dmwl IIIIi Hnltb Scieol:es Cmrer Pmn Sllllr ofMmi.ciDe, Pf!llll Slm-Milioa S. Hfnbey MMical Cam Title of Stady: "Where Sci.eoc:e and COIDIJIIJDities Meet: A Compu11li"\'e Case Stndy of COIIIIDDIIity Coalition md Caoca-Ceula" Stnrtegin to Caacer Sc:reeamg among R.unl Rrs.ideats" PriD.cipallnnstigator: Breoda C. Kluhsmao, MSS, PhD Caodida&e OtMr Investigaton: Diaoe Sheehm, BA You are beiag asked to "llohmteer to tab! part In a reseut:h study. Reseln:h studies Include ouly people who choose to tab put. 'Ibis explaios iDfODDalion about 1bis Rsean:h. You are urged to ask questions about aJl}1biog that is not clear to you. PURPOSE: The pmpose of this study is to lmm more about stntegi.es used by community coalitions IDd CIIIICer center outreach prognms to iaaeue CliJICier SCReDiag among rural RSideab. The study is expected to last about ooe year. About 60 coalihOD members IDd cmcer center outreach prognm staff are expected to participate. PROCEDURES: Hyou choose to you will completr a one-time telephone intenriew. An interviewer from the Pean State College of Medicioe will call or e-mail you to scbedu1e a COJlVellieat bDM! for you to complete tbr telephone intavirw. We ask that yon choose a srttiog to complrte tbr inW!rview. The wiD me about 35-40 mimJtes to :md can be scheduled Monday tbrougb Saturday. With you verbal permissioa, !be iofen;rw will be recorded as a cOIDplllM mdio file lllld elecboDically tnascribed for aualysis. Othawi.se, the iD.formatioo you gi\'e wiD be ocred by !be iu&erviewer using penlllld pape!" only. You will be asked questions about cmcer screening s1rategi.es used by youc (Coalition] (O.tnach Program] during the past three yean. TheR are few rUb to you fuz-beUig in !be study. It is possible, but not likely, tbat your idemity md cOidact Information could be ,.;rwed by otbrn uot involved in tbr raearch. If Ibis bappem, my person(s) known to have seen your penooa1 information wiD be asked to sign a Confidmtiality Form promising a.ot to RV'eal your Information to myooe. BENEF1TS: [Coalition A $25 check will be mailed to yon atb!r-compldiDg the telepbooe inisview to thaoJc you fur your puticipation. (O.trrach Propua. Stall) Y will DDt be pllid ftx your P.o!;!!1 149

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Consent Statement (cont'd) SUMMARY ExPlANATION OF REsEARCH, PAGE 2 PROTECTION FROM RISKS: Your oame md penoaa1 comact infunn.aion will be kept coofidential aDd will DOt be used ill my reports from this study. The iDfonnation you give will be coded with a DDmber instead of your name. The iDfomution you give md my of your persoaa1 iDfixmation will be kept in a locbd file md/or pusword-serun!d campateJ file in the locbd office of 1be priDcipal i:awstigatOI" yean (as reqnired by the of Colootdo at Demrl!!-and Heal1h Scieoces Cmter), md then demoyed. YOlilt RIGHTS AS A RESEARCH PARTICIPANT: You have 1be rigbt to aslr:: my ques1ioos you may about this resan:h. If you have ques1io.os or com:ans now or lmer 1bis resean:h, you may comac:t the priDcipal in1.-estigator, Ms. Breoda Khtbsman Ill 717-531-5276 (e-mail: bc:k.10@psu.edu). If you hav-e questi.oos regarding your rights as a research paticipallt or conc:ems about your priVIIc:y, you may call thr resean:h protection advoc:llle ill the Pean Statr-Milton S. Henbey Medic:a.l Ceater HllllloE Subjeds Protection Office at 717-531-.5687. You do not haw-e to participate in this researc:b.. Taking part in Ibis rnean:h study is compldely voluntary. Your decis.ian to par1ic:ipate or to decliDe the resean:h will oat n!SUit ill my penalty or loss ofbeuefi.ts to which you are emittm. is no cost to you to plll"1ic:ipBR. This study is fuoded in part by tbr Pam Statr College of Medi.c:ine aDd tbr ofCokndo md Health Sc:imces Caller. The priDcipal im-estiptor bas uo fimmcial illterest in this study md will DOt rec:ei.\o-e my fioaDcial benefit from conducting thr study. YotJR VOLUNTARY CONSENT TO PARTICIPATE: Your return of tbr Fmm with the YES box c:bec:ked and your penooa1 cODtact information provided will imply your volUDtm COIISiftlllo participllle :in tbe study. Your return Fmm with the NO box c:becked wi111eU liS that .s!!!!!!E to participate in the study. This Summary &plaut:i.on ofR.esean:h is yours to krep for futur-e refemc:e. 150

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Interview Questions INTERVIEW QUESTIONS I'IZ&SB DO JQR'IIE11JDTB15AIDI. 1JSE AS &Ef:uo:NCE DUKIR& 'DI.EPIICJIQ IKIU:VdW. Brief Rnirw of Stady of this study is tD usess used by c:UIIlWIIIIily coaliti.om md cmcer cemer outreach prognms ID CUIIler screeuiDg IIIIIDDg rural residenls dariog the put 3 }'121S- About 60 individmls will in the study. interview will tU:e about 35-40 mimrtes_ You u.y refuse to mswer my question md emd your panicipatian at my time_ Your idemity will be kept completely confidenti.I md. will DOt be shmm with myaoe, oc in my publiation OJ pl8EIIlation resulting fi:om the study. infOillllltian you give will be coed witb a study llllll1ber instrad of your l:aRn-Vw We ur in Ieaming how amcer saesring is being promoted in runl comiilDiriti6. L How would yon dr:saibe your [coal:iticn's] [ciiiCI9" center's] wniH are l@OV!I!fi. J!C!P!Iaeion c:Uncteristies)'! 2_ Pl.e.uetellmeaboutyour [coalition's) gem K!T!'r slort!withrunl re;idmts dmiDg the put 3 ymn. 3_ What has your rule hem in efforts? 4_ How would yon describe the tym pfswq wuepr "Rtsgjg your [coalitioa] [cmcer cemrr] lw used witb runl RSidmts over the past 3 yeus'! 5 Cm you please desaibe the barrien to c:Dc:ft' Xl'ft'llinr in your run) ciDIIIIIIlDities, md how your [coalition] [cmca-those burier1 in your scresing intervmticms? 6_ How does your [ c:oalitiaD] [cmcer Ct!lk:r] drfiw SD.ess in your runl, ciiiC8 saftlliDg iaten.'!!ltians, md how would you describe the sc:essr.IMss of your l!l'!lr!l!l's cmcer K!'!S!IiJu: dforb in the past 3 YftiS? all the questioas I have_ IbaDk you for your time. After the intaview is trmsa:ibed, yon may be uked to m.-irw the writtm 1nDSCript of om interview to canfinn that is COIIKtly states the information you provided. 151

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AcceptanceRefusal Form Stody ID No_: ACCEPTANCE/ REFUSAL FORM D YES, I wish to participate in the study. FIRsT NAME (please print) LAST NAME (please print) Bl:sTDA\"S TO CALL: BEsT Tn.n:s TO CAU.: AREA CODE+ T'ELEPB:O!'o"E. NUMBER with yuuJ (No cellpblllll! JIIDiben, plase) 0 Mondays L__) 0 Tuesdays L__) 0 L__) 0 Thundays L__) 0 Fridays L__) 'E-MAIL ADDRESS: (Optianal) D NO, I do NOT wish to participate. Thank you. Please return this form in the pre-paid envelope. 152

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cancer in a predominantly rural population (United States). Cancer Causes Control. 2006;17(6):851-6. Centers for Disease Control and Prevention [homepage on the Internet). Behavioral Risk Factor Surveillance System. BRFSS: Turning Information Into Health. [Internet]. Atlanta: Centers for Disease Control and Prevention; [updated 2007 June 29; cited 2008 Aug 14]. Available from: http://www. cdc. gov /brfss/index.htm/. Centers for Disease Control and Prevention. Cancer death rates-Appalachia, 19941998. MMWR. 2002;51(24):527-29. Centers for Disease Control and Prevention [homepage on the Internet]. Guide to Community Preventive Services. [homepage on the Internet]. Atlanta: Centers for Disease Control and Prevention; [updated 2008 Jul9; cited 2008 Sep 9). Available from: www.thecommunityguide.org/cancer/. Centers for Disease Control and Prevention. Increasing physical activity. A report on recommendations of the Task Force on Community Preventive Services. MMWR. 2001b;50(RR-18):1-14. Centers for Disease Control and Prevention. Promoting oral health: interventions for preventing dental caries, oral and pharyngeal cancers, and sports-related craniofacial injuries. A report on recommendations of the Task Force on Community Preventive Services. MMWR. 200la;50(RR-21):1-13. Centers for Disease Control and Prevention. Strategies for reducing exposure to environmental tobacco smoke, increasing tobacco-use cessation, and reducing initiation in communities and health-care systems. A report on recommendations of the Task Force on Community Preventive Services. MMWR. 2000;49(RR-12):1-ll. Centers for Disease Control and Prevention. Vaccine-preventable diseases: improving vaccination coverage in children, adolescents, and adults. A report on recommendations of the Task Force on Community Preventive Services. MMWR. 1999;48(RR-8):1-15. Centers for Disease Control and Prevention [homepage on the Internet]. Health Disparities in Cancer. [homepage on the Internet]. [updated 2006 Jull1; cited 156

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