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Factors influencing the participation of older women in screening mammography and pap tests

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Factors influencing the participation of older women in screening mammography and pap tests
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Dreisbach, Susan Lynn
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English
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x, 107 leaves : illustrations, forms ; 29 cm

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Subjects / Keywords:
Cancer -- Diagnosis ( lcsh )
Cancer -- Psychological aspects ( lcsh )
Medical screening ( lcsh )
Cancer -- Diagnosis ( fast )
Cancer -- Psychological aspects ( fast )
Medical screening ( fast )
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bibliography ( marcgt )
theses ( marcgt )
non-fiction ( marcgt )

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Bibliography:
Includes bibliographical references (100-107 leaves ).
General Note:
Submitted in partial fulfillment of the requirements for the degree, Master of Social Sciences.
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Department of Humanities and Social Sciences
Statement of Responsibility:
by Susan Lynn Dreisbach.

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|University of Colorado Denver
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Auraria Library
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36392054 ( OCLC )
ocm36392054
Classification:
LD1190.L65 1996m .D74 ( lcc )

Full Text
FACTORS INFLUENCING THE PARTICIPATION
OF OLDER WOMEN
IN SCREENING MAMMOGRAPHY AND PAP TESTS
by
Susan Lynn Dreisbach
B.S.N., Ohio State University, 1972
A thesis submitted to the
University of Colorado at Denver
in partial fulfillment
of the requirements for the degree of
Master of Social Sciences
1996


This thesis for the Master of Social Sciences
degree by
Susan Lynn Dreisbach
has been approved
by
ft

Date

Carole A. Chrvala


Dreisbach, Susan Lynn (M.S.S., Master of Social Sciences)
Factors Influencing the Participation of Older Women in Screening Mammography
and Pap Tests
Thesis directed by Professor Jana Everett
ABSTRACT
Women aged 65 and older are at greater risk for developing breast and cervical
cancer due to their age, yet they have the lowest rate for consistent screening by
mammography and Pap smear. Focus groups, involving 110 Anglo, African -
American, and Hispanic women ages 50 to 74, were used to identify the factors
that facilitate or obstruct older womens participation in screening mammography
and Pap smears. The results of this study demonstrate the progress that has been
achieved over the past decade toward making screening mammography a routine
preventive health behavior in older women, as evidenced by all the women in the
study knowing that older women need to have screening mammograms. In
addition, the study showed that there are few differences between the factors that
influence those women 65 and older and the factors that influence those under 65.
The two differences identified indicate that the older women are influenced more
by recommendations from their physicians and that Medicares policy of paying
only for biennial mammograms may be a barrier to annual mammograms for
women 65 and older.
Based on focus group data, the primary factor that encourages participation in
both screening procedures is the belief in the benefit of early detection of the
m


cancers. In addition, for those women 65 and older, the doctors recommendation
and encouragement of screening for breast and cervical cancer is facilitative.
Participation in screening for cervical cancer is also facilitated by the social norm
of Pap smears being a routine preventive health behavior.
On the other hand, the primary barriers to the consistent use of screening
mammograms are the fear of finding cancer, not knowing that age is a risk factor,
conflicting information about screening guidelines, the perception of low
susceptibility to breast cancer, lack of insurance coverage for annual
mammograms, and the pain and discomfort associated with the procedure. In
comparison, barriers to Pap smears include embarrassment, the gender and attitude
of the doctor, the perception of low personal susceptibility to cervical cancer,
conflicting information about screening guidelines, and procrastination.
This abstract accurately represents the content of the candidates thesis. I
recommend its publication.
Signed]
1 Jana Everett,Ph.D.
IV


CONTENTS
CHAPTER
1. INTRODUCTION................................................1
Problem Statement..........................................1
Underlying Assumptions.....................................3
Organization of the Thesis.................................4
2. PREVIOUS RESEARCH...........................................5
Introduction...............................................5
Rationale for Screening Older Women for Breast
and Cervical Cancer........................................5
Screening Older Women for Breast Cancer.................5
Screening Older Women for Cervical Cancer...............6
The Impact of Early Detection on Survival Rates
for Breast and Cervical Cancer........................ 7
Costs and Benefits of Screening Mammograms..............8
Benefits and Cost Effectiveness of Cervical Cancer......9
Screening Trends in Compliance with Screening Guidelines..10
Compliance with Screening Mammography Guidelines.......10
Compliance with Pap Smear Screening Guidelines.........12
Ethnicity and Screening Behaviors......................12
Factors that Influence Participation in Screening
Mammography and Pap Smears................................13
Knowledge and Information Factors......................14
Attitudes and Beliefs..................................14
v


Personal Factors........................................15
Competing Health Problems...............................16
Factors Inherent in the Medical System..................17
3. THEORETICAL FRAMEWORK........................................20
The Health Belief Model....................................20
The Theory of Reasoned Action..............................21
The Transtheoretical Model.................................23
Underlying Assumptions.....................................24
4. METHODS .................................................... 26
Design.....................................................26
Recruitment of Participants................................29
Participants...............................................31
Moderators.................................................34
Setting....................................................35
Measurement................................................36
Data....................................................36
Transcripts.............................................36
Reliability.............................................37
Researcher Influence....................................38
5. RESULTS......................................................39
Knowledge and Information Factors.......................39
Group Discussion........................................39
Summaries of Factors Influencing Participation of Older
Women in Screening Mammograms and Pap Smears............40
General Knowledge ......................................40
Important Sources of Health Information.................40
Knowledge of Screening Guidelines.......................43
vi


Risk Factors for Breast Cancer............................44
Risk Factors for Cervical Cancer..........................45
Reduction of Risk Factors for Breast Cancer...............45
Tests to Detect Breast Cancer.............................46
Tests to Detect Cervical Cancer...........................46
Advantages of Early Detection of Breast Cancer............47
Advantages of Early Detection of Cervical Cancer..........47
Attitudes and Beliefs........................................47
Fear and Denial in Breast Cancer..........................48
Foremost Thoughts and Beliefs about Cervical Cancer.......49
Potential to Prevent and Cure Breast and Cervical Cancer..50
Perceived Susceptibility to Breast Cancer.................50
Perceived Susceptibility to Cervical Cancer...............54
Efficacy of Screening Mammography.........................58
Efficacy of Pap Smears....................................58
Personal Factors.............................................59
Procrastination...........................................59
Embarrassment.............................................59
Pain and Discomfort during Mammography....................60
Pain and Discomfort Associated with Pap Smears............60
Competing Health Problems....................................61
Factors Inherent in the Medical System.......................61
Physician-Related Factors.................................61
Prescription Coercion.....................................62
Secondary Access Barriers.................................62
Effects of Health Insurance...............................63
vii


Summary Tables..............................................65
6. DISCUSSION AND CONCLUSIONS.....................................70
Introduction................................................70
Knowledge and Information Factors...........................70
The Benefit of Early Detection...........................70
Conflicting Information..................................71
Risk Factors and Perceived Susceptibility to Breast Cancer.72
Risk Factors and Perceived Susceptibility to Breast Cancer.74
Efficacy and Safety of Mammography.......................74
Efficacy of Pap Smears...................................75
Attitudes and Beliefs.......................................75
Fear of Finding Cancer...................................75
Personal Factors............................................76
Embarrassment........................................... 76
Pain and Discomfort during Mammography...................77
Pain and Discomfort Associated with Pap Smears...........77
Procrastination..........................................78
Competing Health Problems...................................79
Factors Inherent in the Medical System......................79
Physician-Related Factors............................... 79
The Habit of Pap Smears..................................80
The Effects of Health Insurance..........................81
Theoretical Considerations..................................81
Data Limitations............................................83
Conclusions.................................................84
Key Findings.............................................84
vm


Implications for Interventions.................85
Implications for Future Research...............86
APPENDIX
A. RECRUITMENT SCREENING QUESTIONNAIRE................88
B. MODERATORS GUIDE................................. 94
REFERENCES..............................................100
IX


ACKNOWLEDGMENTS
I would like to express my appreciation to Jana Everett, Ph.D., and Carole
Chrvala, Ph.D., for their expertise and guidance throughout the preparation of this
thesis. In addition, I would like to acknowledge the funding provided for this
research by the Centers for Disease Control, Grant # U57 CCU 806747-05.
x


CHAPTER 1
INTRODUCTION
Problem Statement
Early detection and treatment have been responsible for significant reductions
in mortality from breast and cervical cancer in Colorado and the United States in
recent years. However, older women have historically been underrepresented in
cancer screening programs even though older women are at higher risk for both
breast and cervical cancer. Women aged 65 and older comprise over 12.5% of the
adult female population in the United States today (U.S. Census Bureau, 1994),
and that percentage is projected to rise as the proportion of seniors in our
population increases, magnifying the problem of breast and cervical cancer in older
women as a national health concern. Consequently, the Department of Health and
Human Services (1991), in setting its Healthy People 2000 disease prevention
objectives, has identified older women, ages 65 to 74, as a special target for breast
cancer screening. With a similar goal in mind, the National Cancer Institute and the
Colorado Department of Public Health and Environment have collaborated to
establish the Colorado Mammography Advocacy Program (CMAP) to support
local mammography centers in encouraging women to get annual mammograms
after the age of 50.
Currently the most sensitive and accurate method for the early detection of
breast cancer is screening mammography (Baker, 1982; Hurley & Kaldor, 1992;
Kopans, 1992; Shapiro 1989; Shapiro,; Tabar & Dean, 1987; Venet & Rosen,
1


1988). Similarly, the Papanicolaou test (Pap smear) has been shown to be effective
in detecting early stage cervical cancer (Soloman, 1993). Although participation in
both screening examinations has increased overall in recent years, women 65 and
older are least likely to get the recommended annual screening mammogram and
Pap smear (Breast Screening Consortium, 1990; Calle et al., 1993; Caplan, Well,
& Haynes, 1992; King et al., 1993; Kottke et al., 1995; Rubenstein, 1994).
This behavior is remarkable because 1 out of every 9 American women is
expected to develop breast cancer during her lifetime with women aged 65 and
older being 6 times more likely to develop breast cancer and 7 times more likely to
die from breast cancer than their younger counterparts (American Cancer Society,
1995). Although breast cancer mortality rates declined almost 5% from 1973 to
1988 for women under age 65, during that same period, breast cancer mortality
rates for women 65 and older increased 11% (Miller, Ries, Hankey, Kosar, &
Edwards, 1992).
In comparison, the mortality rate for cervical cancer has declined by more than
70% over the past 40 years due primarily to extensive screening by Pap smear. Yet
participation in Pap screening continues to decline in women over age 60
(Soloman, 1993). Although the incidence of invasive cancer peaks at 40 to 55
years of age (M.D. Anderson, 1988), older women experience a decreased survival
rate from cervical cancer which is associated with older (particularly Hispanic)
women frequently presenting with cervical cancers that are more advanced and
invasive than those of their younger counterparts (Adami, 1994). In addition,
cervical cancer develops more slowly than many other cancers, taking an average
of 10 years to develop in situ and taking up to 30 years to develop into an invasive
cancer (Hoskins, Perez, & Young, 1993). Because of the slow development of
cervical cancers, it remains essential that women over 60 continue to be screened
regularly for cervical cancer, even though the lifetime risk is much lower, 0.7 % for
2


invasive carcinoma and 2.0% for carcinoma in situ, than for breast cancer (Eddy,
1990).
Although numerous factors have been identified that influence womens
participation in screening mammograms and Pap smears, most research has
focused on women aged 40 years and older with little attention to women aged 65
and older. The purpose of this study is to identify, through focus groups and a
brief survey, those factors that facilitate or obstruct the participation of women
aged 65 to 74 in annual screening mammography and Pap smear screening as
recommended in national guidelines1. Factors will also be identified that facilitate
or obstruct participation in screening for women aged 50 to 64 as a basis of
comparison between older women before and after the age of retirement and
Medicare eligibility. Identification of facilitative factors and barriers to screening
will provide a basis for future studies and can be used to develop and evaluate
interventions to increase the participation of older women in screening for breast
and cervical cancer.
Underlying Assumptions and Ethical Considerations
As with any research, this study reflects philosophical assumptions embedded in
the cultural values of contemporary American society. It reflects the Western belief
that individuals, rather than society or government, hold the primary responsibility
for their own health. It assumes that longevity and disease prevention are goals
supported by the American public as well as medical and political institutions.
More specifically, this particular study assumes that our society values older
women enough to spend national funds on protecting their health. Although such a
value may be commonly expressed, in my opinion, this value is not always
3


reflected in public policy decisions, for example, in Medicares current policy of
paying for mammograms only every two years.
This study also reflects the Western belief in the authoritative knowledge of
medicine, in which the professional medical establishment has been granted cultural
authority because it has access to specialized knowledge, beyond the ken of the
average individual, that enables it to prevent and manage disease. The authority
vested in the medical establishment gives status to scientifically developed and
medically endorsed guidelines for health behaviors, such as those regulating cancer
screening. Thus, this study assumes that it is in the best interest of the public to
follow the guidelines regarding breast and cervical cancer screening.
As Patai (1991) points out, ethical considerations arise from studies involving
less privileged women. From that perspective it is important to realize that
increasing womens awareness of their risks for developing breast or cervical
cancer, and of the need for an annual screening mammogram and Pap test, may
produce anxiety, especially in women not having adequate health care insurance to
cover the cost of the screening exams.
Organization of the Thesis
This introduction has examined the scope of the problem being studied and the
philosophical assumptions inherent in the study that shape its design and
interpretation. Subsequent chapters will review the previous research findings,
outline the methodology of the study, and present the results. In the conclusion,
the findings of this study will be compared to previous findings, and implications
for interventions and future research will be presented.
4


CHAPTER 2
PREVIOUS RESEARCH
Introduction
This literature review will explore three distinct issues concerning screening for
breast and cervical in women aged 65 and older. First, it will examine the
justification for screening women in this age group. Second, it will outline past
and current screening behavior patterns. And third, it will investigate previously
reported factors that influence mammography and Pap smear compliance in older
women.
Rationale for Screening Older Women for Breast and Cervical Cancer
Screening Older Women for Breast Cancer
Prior to 1992, much of the available information on breast and cervical cancer
in women aged 65 and older was extrapolated from studies on younger women,
often creating confusion among both consumers and health care providers. In
1992, The Forum on Breast Cancer Screening in Older Women published a
comprehensive collection of research that clarified many issues pertinent to breast
cancer screening in older women. Key findings confirmed that the incidence and
mortality rates for breast cancer rise with age, and that the incidence rate of breast
cancer rises through the eighth decade, peaking at ages 75-79 (Costanza, et al,
5


1992a; National Cancer Institute, 1991). Although recent increases in incidence
rates among all age groups reflect to some extent the more frequent use of
screening and diagnostic mammography as well as advances in pathologic
diagnosis (Glass & Hoover, 1988; White, Lee, & Cristal, 1990), incidence rates
remain disproportionate for older women, with women 65 years old and older
accounting for 43% of newly diagnosed cases each year (Yanick, Ries, & Yates,
1989).
The Forum Panel also documented the existence of lower survival rates for
older women diagnosed with breast cancer. The decline in immune function
coincident with advancing age may be responsible in part for lower relative
survival rates and for the accelerated aggressiveness of some tumors in the older
host, particularly those women over 75 (Costanza, et al. 1992a; Kaesberg &
Erschler, 1989). The lower survival rates may also reflect the fact that breast
cancers in older women are frequently more advanced when diagnosed than those
found in younger women (Chen, Trapido, & Davis, 1994), possibly relating to a
reluctance among older women to utilize screening mammography (King et al.,
1993; Dawson & Thompson, 1990; Goodwin et al., 1986).
Screening Older Women for Cervical Cancer
Although there is no comparable comprehensive overview addressing the need
to screen for cervical cancer in older women, several studies have examined
cervical cancer and screening by Pap smear in women over age 60 or 65. Although
incidence rates for cervical cancer peak at 40 to 55 years of age (M.D. Anderson,
1988), older women remain susceptible because cervical cancer and particularly
invasive forms develop slowly over periods up to 30 years and because the efficacy
of the immune system tends to decline with age (Hoskins, et al., 1993). As with
breast cancer, the survival rate is consistently lower for older women diagnosed
6


with cervical cancer than for those women under age 65. The lower survival rate
reflects in part the fact that older women present with more advanced stages of
cervical cancer suggesting that these women are not receiving regular screening
examinations to detect cervical cancer in its early stages and are delaying in
seeking medical attention (Adami, et al., 1994; Chen, et al., 1994).
Physiological changes in older women increase the complexity of regular
cervical screening in this population. Positioning for a gynecologic exam in a
lithotomy position may be difficult or painful for women with bone and joint
disorders which are common among older women (Peters, Bear, & Thomas,
1989). Recovery of endocervical cells in older women requires more complex
sampling methods, such as the spatula/brush technique, to insure an adequate
screening sample of appropriate cells (Reissman, 1988). Recovering the
appropriate cells for the smear is further complicated by the high number of
women having had hysterectomies. Nevertheless, a past history of hysterectomy
does not preclude the need for Pap smear screening for cervical cancer, since the
cervix may remain intact in up to one-third of women with hysterectomies
(Mandelblatt, Hammond, & Wistreich, 1986), and cancers may still be detected by
Pap smear in the absence of the cervix (MacCormac, Lew, King, & Allen, 1988).
Impact of Early Diagnosis on Survival Rates for Breast and Cervical Cancer
Advances in early diagnosis and treatment have improved the 5-year survival
rate for localized breast cancer from 78% in the 1940s to 94% in 1995. The 5-
year survival rate drops to 73% for cancers that have spread regionally, and to
18% for breast tumors with distant metastasis (Cancer Society, 1995). In
comparison, the current 5-year survival rate for women diagnosed with cervical
cancer is 67%, with an increase to 90% for women diagnosed with localized
7


disease. The impressive improvements in survival rates for both breast and cervical
cancer demonstrates that detection and treatment of these cancers at the earliest
possible stage saves lives. Early detection and treatment may also decrease the
need for extensive treatment, in turn, saving health care dollars.
Costs and Benefits of Screening Mammograms
The cost-benefit balance for screening older women for cancer has been a
controversial issue particularly for screening mammography since its cost is
relatively high. According to economist Martin Brown (1992), the cost-
effectiveness of screening mammography is more sensitive to the price of the
mammogram than to the age of the group being screened, although at any given
price, the cost effectiveness decreases as age increases. Kattlove et al. (1995)
evaluated the cost and benefit of screening mammography for women from age 40
to 75 based on data from the Swedish Two County Trial. Using survival as the
only benefit considered, they found a 30% reduction in mortality for women 50 to
69 years of age, but no statistically significant survival benefit for women 70 and
older (although there were fewer breast cancer deaths in the group receiving
screening mammography). This lack of survival benefit was attributed to there
being fewer deaths from breast cancer than from competing causes. Interestingly,
another recent study by Kerlikowske et al.(1995) analyzed survival data for
women grouped by ages 40 to 49 and 50 to 74. By including women through age
74, a significant survival benefit was demonstrated for women through age 74.
Other cost-effectiveness studies by Eddy (1987) and Muller, Mandelblatt, and
Schecter (1990) concluded that screening for breast and cervical cancer in women
65 and older would extend life for elderly women at an acceptable cost to the
Medicare program. As a result of these studies, in 1991 Congress extended
Medicare coverage for biennial screening mammograms and Pap smears. To
8


further clarify screening guidelines, Mor, Pacal, and Rakowski (1992) suggest that
screening mammography efforts for women age 65 and older are most beneficial
and therefore most cost effective when directed toward those women whose health
status would enable them to tolerate treatment for a diagnosed cancer.
Benefits and Cost Effectiveness of Cervical Cancer Screening
The benefit of annual Pap smear screening in women over age 65 remains
controversial. The current recommendations by the American Cancer Society and
National Cancer Institute, suggest that annual screening is cost effective and
necessary because high-quality laboratory services may not always be utilized and
there are no widespread programs to identify and screen those women with the
highest risk (American Cancer Society, 1980; Early Detection Branch of the
National Cancer Institute, 1987; Miller, 1992). Other studies have found that
annual screening of the elderly is only marginally beneficial and very costly as
compared to triennial screening (Fahs, Mandelblatt, Schedter, & Muller, 1992).
Miller et al. (1991) suggest that women who have had normal smears over the past
nine years, without a history of abnormal smears or symptoms, may safely be
eliminated from screening altogether. As a result of these mixed findings, it is
unclear whether the underrepresentation of older women in cervical screening
programs reflects the belief that it is not cost effective or necessary, or whether it
reflects insufficient identification and inclusion of older women.
Although it seems clear that screening older women for breast and cervical
cancer can decrease morbidity and mortality from these cancers, the cost-benefit
issue will grow as medical resources, in particular Medicare resources, diminish.
The question of when and why to stop screening women for both breast and
cervical cancer involves complex decisions based on social values, cost
9


effectiveness, attitudes of older women, and their health status. How these factors
might be weighted, and who should make such decisions remains to be determined.
Trends in Compliance with Screening Guidelines
Compliance with Screening Mammography Guidelines
Although the use of screening mammography to detect early stage breast
cancer has increased significantly in the past decade, usage continues to decline
after age 64 (Breast Screening Consortium, 1990; King, 1993; Kopans, 1992).
Reports are consistent that women ages 50-59 report the highest rate of ever
having had a mammogram (approximately 44%), with rates declining in women 60
and older to a rate of 32% for women aged 70-74 (Dawson & Thompson, 1990).
In a 1988 study by Hayward, Shapiro, Freeman, and Corey, 50% of the surveyed
women ages 40-49 had screening mammograms in the past year, as compared to
only 17% of the women aged 65 and older. It is encouraging to note that in the
1992 AARP survey of women from the general population aged 65 and older, 55%
reported having had a mammogram within the previous 2 years (Brown & Hutner,
1993). Similarly, King et al.(1993), found that 48% of women surveyed, aged 65
and older in independent-living, urban retirement communities reported having had
a mammogram within the previous 2 years. Somewhat perplexing are the findings
from Blustein's (1995) recent study showing that during 1991 and 1992, the first
two years that Medicare covered the cost of screening mammography, only 36.9%
of women 65 and older who were eligible for Medicare benefits had a
mammogram. Likewise, Medicare summary data for 1992-93 show that 37% of
the Medicare eligible women 65 and older in the United States, and 39% of those
in Colorado, received mammograms during that time period (Health Care
10


Financing Administration, 1994). In comparison, Colorado Behavioral Risk Factor
Surveillance System (BRFSS) data for 1993 and 1994 indicate that 58.8 % and
71.5% of Colorado women aged 65 and older received mammograms within the
past two years (BRFSS, 1993; BFRSS, 1994). Similar results from the 1992
Colorado cross-sectional survey data indicate that 75.4% of women aged 50 to 64
received a mammogram within the past year, and that 78.5% of women 65 and
older had received a mammogram within the past year. The higher rate of
compliance for older women in Colorado may reflect the efforts of CMAP to
encourage annual screening mammograms in women over 50.
Rates for consistent annual screenings are considerably lower than rates for a
single screening within a twelve or twenty-four month period. The 1990
Mammography Attitudes and Usage Study reports a 31% rate for consistent
annual screening mammograms for all women (Marchant & Sutton, 1990). Data
specific to women 65 and older were not available, but a lower compliance rate for
repeated annual mammograms among older women may be influenced by
variations between those older women being screened annually according to
national guidelines and those being screened every two years, according to
Medicare payment regulations.
L
Compliance with Pap Smear Screening Guidelines
Like studies of compliance with screening mammography, studies of Pap smear
screening indicate that women who are older, are of a race other than white, and of
lower socioeconomic status are less likely to participate in cervical cancer
screening (Chen, et al.,1994; Hayward et al. 1988; Kotke, et al, 1995; Makuc,
Fried, & Kleinman, 1989; Mamon, et al, 1990). Interestingly, Kotke, et al.(1995),
in addition to verifying that participation in Pap smear screening declines with age,
discovered that although 60% of the women surveyed (ages 18-89) reported that
11


they had received a Pap smear in the past year, the verified one-year Pap test rate
was only 35%. There were no comparable data broken out specifically for older
women. Compared to national statistics, 1994 Colorado rates for having had a Pap
smear within the past three years dropped from 86.1% for women ages 50 to 64 to
62.3% for women 65 and older (BRFSS, 1994). Similarly, 1992 Colorado cross-
sectional data indicate that compliance for annual Pap smears decreases with age,
with 73.1% of the women 50 to 64 reporting having a Pap smear within the past
year as compared to 56.5% of the women aged 65 and older (Colorado Cross-
sectional Study, 1992)
Ethnicity and Screening Behaviors
The literature reports mixed findings associating ethnicity with regular usage of
mammography or Pap smear screening, although it does document that Mexican
American women have an elevated rate of advanced-stage cervical cancers and
African-American women have a higher rate of advanced-stage breast tumors than
women of other ethnic and racial backgrounds (Chen, et al., 1994; Villar &
Menck, 1995). Calle et al. (1993) reported that race other than White and never
being married were the strongest predictors of not being screened by Pap smear
and that Hispanic ethnicity, race other than white, age greater than 65, low
educational attainment, low income, and residence in a rural area were the
strongest predictors of not having a screening mammogram. Similarly, Caplan et
al.(1992) found that based on 1987-1988 National Health Inventory Survey
(NHIS) data, minority women 65 and older reported the lowest rates of ever
having had a mammogram. However, Suarez (1994) found that Hispanic women
who held traditional attitudes toward family structure and sex-role organization
had slightly higher rates of Pap smear and mammogram screening than more
acculturated Hispanic women, possibly due to the psychosocial and financial
12


support afforded by the extended family. Fox and Roetzheim (1994) demonstrated
that differences in mammography screening rates between White, Black, and
Hispanic women were explained more by educational status, income level, and
adequate health insurance than by ethnic/racial background. Similarly, 1992 and
1994 cross-sectional studies in Colorado demonstrated no significant differences in
rates of Pap smear or mammography screening attributable to race or ethnic
background (Colorado Department of Public Health and Environment, 1992).
The literature provides evidence that compliance with breast and cervical
screening guidelines is improving for most women, but not necessarily for older
women. To better understand the factors that inhibit compliance in women 65 and
older, it is necessary to look at a multitude of specific factors.
Factors that Influence Participation in Screening Mammography and Pap Smear
According to the studies cited below, the factors that influence womens
decisions whether or not to participate in mammogram and Pap smear screening
can be clustered into five categories: 1) knowledge and information factors, 2)
attitudes and beliefs, 3) personal factors, 4) competing health problems, and
5) factors inherent in the medical system. Some factors or barriers apply to
women of all ages, while some are specific to older women. Additional variation
occurs depending on cultural background, educational level, and availability of.
health insurance. The various factors may act in isolation or with each other to
influence womens decisions about mammography and Pap smears.
13


Knowledge and Information Factors
Knowledge and information factors reflect the level of attention that the
individual gives to health care messages, and the accessibility of influential health
care messages regarding breast and cervical cancer screening. One of the most
frequently cited reasons for women not to have had a screening mammogram is a
lack of awareness of risk factors and screening guidelines. Although most women
have heard of mammography and the Pap test, they are unaware that age is a risk
factor and that they should receive screening examinations in the absence of
symptoms. In fact, many women believe that their risk decreases as they age
(Blasse, 1992; Sutton, Eisner, & Burklow, 1994; Zapka & Berkowitz, 1992).
Older women also lack accurate knowledge about the procedure of
mammography, sources of screening mammography, general risk factors for breast
cancer (Breast Screening Consortium, 1990; Rimer, 1992) and the availability of
Medicare benefits for screening mammography (Blustein, 1995; Rubenstein,
1994).
Attitudes and Beliefs
A multitude of culturally constructed perceptions, attitudes, and beliefs
interface to influence the breast and cervical cancer screening behaviors of women.
Stein et al. (1992) concluded that perceived susceptibility was the most powerful
predictor of future intention to participate in screening mammography, and King et
al. (1993) have shown that perceived susceptibility to breast cancer declines with
age. Although a family history of breast cancer is a known risk factor, if does not
necessarily encourage a woman to obtain a screening mammogram; however,
women with a family history who participate in screening mammography tend to
get mammograms more frequently than those without a family history of breast
cancer (Costanza et al., 1992b). The belief in the ability to cure early stage cancers
14


declines with age also and many seniors consider a diagnosis of cancer as a death
sentence (King et al., 1993; Zapka & Berkowitz, 1992).
In addition, many older Americans tend to focus more on prevention than on
detection. They tend to believe that mammography is painful and risky and that
having a Pap smear is embarrassing. Some women hold a fatalistic belief that they
lack any control in preventing or treating cancer (Berkman, Rohan, & Sampson,
1994). Attitudes and beliefs about the mammographic procedure that prevent
women from participating include a lack of confidence in the skill level of the
technician performing the mammogram and a fear that radiation exposure or the
compression of the mammogram will cause breast cancer (Zapka & Berkowitz,
1992). Fear has been identified in many studies as a barrier to screening. This
includes fear of the examination itself, as well as a highly prevalent fear of
discovering cancer (Blasse, 1992; Sutton et al, 1994, Zapka & Berkowitz, 1992).
Some attitudes and beliefs are amplified among specific ethnic groups. Older
Hispanic women report that embarrassment and fear of learning the results of the
mammogram or Pap smear are their primary reasons for avoiding those screening
tests (Fox & Roetzheim, 1994). Older African-American women report a greater
sense of fatalism concerning diagnosis of breast cancer (Berkman et al., 1994).
Personal Factors
Very little has been written addressing personal barriers to breast and cervical
screening among older women. Personal barriers vary widely among individuals
and have primarily been explored in qualitative studies using focus groups. Sutton,
et al. (1994), and Costanza et al. (1992) found that personal factors such as
procrastination, lack of time, and concerns with language and translation were
considered barriers by a few older women. Zapka and Berkowitz (1992) found that
15


several of their older focus group participants had experienced pain or discomfort
during mammography, although none reported the pain as a barrier to future
mammograms. Similarly, two other studies investigating the degree and
consequence of pain during mammography compression indicate that pain is not a
deterrent for women even though many women do experience discomfort or pain
during the exam (Jackson, Lex, Smith, 1988; Stomper, et al., 1988). Because of
the individual nature of personal factors and personal barriers to screening, it is
difficult to assess the magnitude of these barriers for a broader population.
Competing Health Problems
Cancer screening in older women is complicated by comorbidity: the existence
of other, often chronic, diseases. The prevalence of having two or more chronic
conditions increases with age among men and women, with 45% of women ages
60-69 reporting co-existing chronic conditions and 70% of women 70 and older
reporting the presence of at least two chronic conditions (Satariano, 1992). The
presence of other medical conditions may complicate treatment and result in
increased mortality from breast and cervical cancer in this population. Because of
this, diagnosis at an early stage, which may allow for a more conservative
treatment, is especially important in older women with other chronic medical
conditions (King et al., 1993). More subtly, competing health problems may focus
resources on other problems, may influence physicians decisions to recommend
screening for breast and cervical cancer, and may impair the mobility of women to
be screened (Satariano, 1992).
Interestingly, Mandelblatt et.al.(1993) report that having more than three
chronic conditions was a primary predictor of compliance with recommended
screening mammography for low income urban Black women aged 65 and older.
This suggests that frequent contact with the medical system may increase the
16


likelihood that a screening mammogram is recommended, and that women with
more frequent contact may develop greater skills to negotiate the medical system
and more easily access a mammography facility.
The ways in which competing health problems influence participation in breast
and cervical cancer screening are poorly understood and vary depending on the
health status of the individual and the value placed on screening by individual
women and physicians. Complex ethical questions are invoked in deciding when
acute and chronic medical conditions obviate the need for screening mammography
and Pap smears, warranting additional research in this area.
Factors Inherent in the Medical System
Physician-Related Barriers. Gaining access to the medical system in order to
obtain a screening mammogram or Pap smear depends on three conditions:
communication of the need for screening by physicians; physical accessibility of the
system; and being able to pay for the procedure. Zapka, Stoddars, Costanza, and
Greene (1989) found that having a regular physician was the most important factor
in predicting compliance with screening guidelines. Along the same line, a number
of studies cite a lack of physician referral as a primary reason that women do not
receive screening mammography or Pap smears. Fox, Siu, and Stein (1994) report
that discussion of early detection of breast cancer between women and physicians
declines as women age. In addition, most physician specialists, other than
obstetrician/gynecologists, do not regularly refer older women for screening
mammography. Studies of physician-reported reasons for not recommending
mammography include: the low yield of findings, concern about the reliability of
radiology reports, belief in the low compliance of patients, lack of time, focus on
other health issues, and forgetfulness (Breast Screening Consortium, 1990; Fox,
Albert, Sitt, & Stein, 1994; Grady, Lemkau, McVay, & Reisine, 1992; Sutton et
17


al, 1994; Weinberger, 1992; Zapka & Berkowitz, 1992). According to
Weinberger, et al. (1992), the Overwhelming majority of physicians are aware of
screening guidelines (86%), believe that the guidelines are reasonable (91%),
believe that mammography can detect cancer at an early stage in older women
(94%), and believe that mammography contributes information not available from
clinical breast examination (98%). In contrast, 29% did not believe that a 75 year
old woman could be expected to live another 10-15 years, 67% did not agree that
annual screening mammography should be recommended for women 75 years and
older, and 62% believed that older women refused mammography more often than
younger women. These beliefs may be partly responsible for the lower rates of
physician referral for screening mammography in older women.
Secondary Access Barriers. A variety of other issues related to accessing the
medical system and screening facilities appear to be most often secondary barriers
to mammography and Pap smear screening; that is, they do not become barriers
unless a mammogram or Pap test is recommended or there is intent to obtain a
screening mammogram or Pap test. These barriers, such as scheduling difficulties,
excessive time for examinations (particularly time waiting), lack of transportation,
and insufficient numbers of local screening centers, may also be primary barriers
for some older women and certainly decrease the likelihood of compliance with
screening mammography when combined with other significant barriers
(Rubenstein, 1994; Costanza et al., 1992).
Cost and Health Insurance. The importance of cost as a barrier has been
examined, but the results are inconclusive. Urban, Anderson, and Peacock (1994)
concluded that it is the net financial and time costs that influence women's
decisions to obtain a screening mammogram and that pricing is a greater factor for
low income women. This is supported by a recent survey by Blustein (1995) that
found that supplemental insurance was strongly associated with the probability of
18


women 65 and older having had a screening mammogram during the first two
years that Medicare provided that coverage. Glass and Hoover (1988) also
determined that the cost of mammography is a formidable barrier for many older
women, yet focus groups have not confirmed this as a significant concern from the
perspective of either the women or physicians (Sutton et al., 1994; Zapka &
Berkowitz, 1992).
The literature reviewed provides a solid foundation for the following study and
suggests that additional research is needed to identify those factors specific to
women aged 50 and older that influence their participation in screening
mammograms and Pap smears. Although, as seen in the literature, factors that
influence compliance with screening guidelines require examination from both
patient and physician perspectives, this study will focus only on the patient's
perspective.
19


CHAPTER 3
THEORETICAL FRAMEWORK
Theories and conceptual models designed to account for health-related
behaviors of individuals and groups have proliferated, with most integrating
current constructs from cognitive, behavioral, and social psychology.
Consequently, there are several models applicable to studying preventive health
behaviors such as complying with recommended guidelines for screening
mammography and Pap smears. Since this study was not designed to test a
particular model, several models will be used to analyze the data from this
study.
The Health Belief Model
The Health Belief Model (HBM) was originally developed in the 1950s by
social psychologists at the U.S. Public Health Service to solve practical
problems, such as the failure of people to participate in programs established to
prevent or detect disease (Rosenstock, 1990). Irwin Rosenstock is credited with
much of the subsequent development and clarification of the model that has
resulted in it being the model most frequently used to explain variations in health
behaviors that maintain health, prevent disease, or detect disease when there are
no symptoms present (Kaplan, Sallis, & Patterson, 1993; Rosenstock, 1990).
According to this model, individuals' compliance with recommended health
behaviors depends primarily on their perceived susceptibility to a disease, the
20


perceived severity of the disease or condition, the perceived benefit of the
behavior (in this case, screening for breast and cervical cancer), and the
perceived personal and health system barriers (such as cost and access to
services). The perceived benefits and perceived costs are evaluated in a cost-
benefit analysis before action is initiated. The concepts of motivation and cues
to action have been added to this model by some authors and may be relevant to
this study. Socioeconomic status and sociodemographic factors also influence
health behaviors, but do so indirectly by altering the perception of susceptibility,
severity, benefits, and barriers (Rosenstock, 1990). This model has only
recently been applied to mammography studies even though the HBM has been
relatively successful in explaining participation in screenings for other diseases
that can be diagnosed before noticeable symptoms such as tuberculosis and high
blood pressure (Stein, 1992). Stein's quantitative mammography study utilizing
this model found perceived susceptibility, perceived benefits, and cues to action
(physician influence) associated with screening mammography utilization. In
addition, research on normative influences suggests that family members and
physicians can influence health behavior (Carter, 1990).
The Theory of Reasoned Action
A second model that appears applicable to screening behavior compliance is
the Theory of Reasoned Action, developed by social psychologists leek Ajzen
and Martin Fishbein in 1980 (Carter, 1990; Kaplan et al., 1993). It is also a
value expectancy theory of behavior intended to explain voluntary human
behavior and heavily influenced by the assumption that people are rational and
make predictable decisions based on the information available to them. The
theory states that intentions are the immediate determinants of performing a
21


behavior, and that attitudes and subjective norms are the primary influences
affecting intention. Attitudes are subjective assessments of value that reflect the
attractiveness or lack of attractiveness of an object of interest. Within the
context of this theory, there are four essential attitudes: 1) the individuals
attitude toward the behavior in question; 2) the individuals belief in the value of
the expected outcome; 3) the individuals attitude about themselves performing
the behavior; and 4) the individuals perception about the attitudes of significant
others toward performing the behavior. Subjective norms and the social
environment impact the decision making process by suggesting what others
think should be done, thereby influencing the individuals motivation to comply
with the recommendations of others.
The theory of reasoned action states that decisions are made to produce the
greatest number of positive outcomes for the individual with the least number of
negative outcomes based on both attitudes and subjective norms. Thus, the
theory predicts that a person is most likely to perform a behavior when she feels
good about performing the behavior, has positive expectations for the outcome,
and experiences social pressure to perform the behavior. In 1985 Ajzen
modified the theory to suggest that perceived control influences the intentions in
addition to attitudes an subjective norms. This modification implies that there
are varying degrees of voluntary behavior that can be predicted by this theory.
Although this theory has been used to predict changes in smoking and exercise
behaviors, to my knowledge, it has not been applied to screening mammography
or Pap smear compliance.
22


The Transtheoretical Model
A third model is the transtheoretical model that focuses on the process and
stages of behavioral change (Kaplan, et al., 1993; Rimer, 1990). Based on the
observation of psychologists James Prochaska and Carlo DiClemente (1984)
that people follow a similar pattern of change during psychotherapy despite
different therapies, this model reflects the cyclic rather than linear pattern of
behavioral change. The transtheoretical model identifies four stages of change.
People appear to move through these stages in an orderly sequence, although
the pace varies with the individual. A person with no intention to change a
behavior is considered to be in the precontemplative stage. The stage of
contemplation, in which the person is thinking about making a change, leads
into the stage of determination when a person becomes committed to making a
change. In the action phase, the person participates in actively changing the
behavior, and in the maintenance stage, the person focuses on sustaining the
gains. Because the model is circular, a person can enter or exit at any point in
the change cycle and can move between phases in either direction..
Different interventions are associated with particular stages in the cycle.
Verbal processes are used to motivate a person to take action and behavioral
processes are more appropriate for supporting the action. For example,
consciousness-raising is more applicable for precontemplators, while self-
reevaluation and self-liberation are approaches better suited for those in the
stage of contemplators. Once action is initiated, reinforcement, supportive
relationships, and stimulus control may be valuable in helping to maintain the
new behavior.
A second construct of the transtheoretical model is decisional balance, the
process of evaluating the positive and negative features of the desired behavior.
23


This process is not unlike the decision-making process in the HBM and the
theory of reasoned action. It suggests that the action and maintenance phases
are associated with a positive decisional balance. Accordingly, the
precontemplative phase is associated with a negative decisional balance, and the
contemplative phase is associated with a more neutral point of decisional
balance.
The transtheoretical model as a grounded theory is highly applicable to
changing health behaviors and has been applied by Radowski et al. (1992) to
screening mammography. Its strength lies in its ability to encourage flexibility in
developing interventions to meet the needs of people in different phases of
change. The model recognizes that interventions should include a range of
options, including self-help and group strategies, community and environmental
interventions, as well as adjustments to public policy. In addition, the
transtheoretical model may offer a structure into which other intrapersonal and
interpersonal theories can be integrated.
Underlying Assumptions
A number of assumptions underlie the health belief model, theory of
reasoned action, and transtheoretical model. All three theories assume that the
individual level of analysis of health behavior is the most important. Models and
theories involving cognitive evaluation of threats and the costs of dealing with
that threat imply that the threat is likely to occur if specific actions are not
followed to prevent the threat. Closely linked to that assumption is an
assumption that beliefs and attitudes cause behavior, not vice versa. A different
perspective might suggest that the two are interactive and not causally related in
24


one direction at all. One assumption central to these and other cognitive models
suggests that a cue is necessary to trigger a behavior. Health theories and
models particularly reflect the assumptions that people value health, will act to
avoid illness, and that specific health actions can prevent or ameliorate illness.
Other assumptions reflecting a positivist perspective are inherent in these
models. They include assumptions that people are rational, conscious beings,
that people make decisions in their own best self-interest, and that benefits and
costs can be measured for the purposes of research. These models minimize the
impact of social support, environmental factors, or political and systemic factors
that also influence the behaviors.
25


CHAPTER 4
METHOD
This study utilized both survey and focus group methods to identify the factors
influencing older womens participation in mammography and Pap smear
screening. This chapter describes the design of the study, the participants, the
moderators and setting of the focus groups, and the measurement of the data.
Design
Data was gathered from 110 women 50 to 74 years of age from the Denver
metropolitan area. The design is actually a case study of womens attitudes toward
breast and cervical cancer screening using a focus group methodology. The case
study was set up to compare the attitudes, knowledge, and characteristics of
women who complied with national guidelines for annual screening mammograms
and Pap smears with those of women who had not complied with the guidelines.
Focus group methodology, a form of non-directive interviewing first used by social
scientists and psychologists in the late 1930's and 1940's (Kreuger, 1994),
provides an in-depth understanding of perceptions, beliefs, and behaviors and
clarifies previously obtained quantitative results. This qualitative method is
valuable for generating new hypotheses that can guide the development of
quantitative measures of behavior.
26


The study involved 12 focus groups that were each homogenous for age, ethnic
background, and type of health insurance. A moderator whose age and ethnic
background were consistent with that of the group directed each focus group
that included the researcher/observer, and 6 to 13 participants who had been
recruited by telephone or personal interviews to meet specified criteria (see
Appendix A). A predetermined moderator's guide outlined specific questions that
were to be administered to all groups, allowing for flexibility in follow-up
questions for each group (see Appendix B).
The attention in focus groups is on the respondents and group dynamics. The
role of the moderator is to facilitate the discussion by encouraging everyone to
respond, by encouraging and validating a broad range of viewpoints, and by
keeping the discussion focused on the research topic. The role of the participants
is to express their opinions in response to the moderator's questions and other
participants comments and questions. The researcher/observer is a non-participant
in the discussion and records responses, non-verbal reactions, and other pertinent
field notes. The observer is also responsible for the audio and video recording of
the discussion and the distribution of incentives following the discussion (Krueger,
1994; Morgan, 1988). In this particular study, the researcher/observer introduced
herself and the moderator, assured confidentiality, and explained the purpose of the
study and the intended use of the results in addition to having each individuals
consent documented. All participants were also given an opportunity to receive a
summary of the results, which they all requested. Following the conclusion of the
focus group discussion, the researcher/observer presented a brief overview of
breast and cervical cancer facts, distributed a womens health calendar and list of
27


community resources for discounted or free screening services, and answered
questions generated by the discussion. This provided an opportunity to correct any
erroneous facts expressed by participants and to encourage women to obtain
screening if they so desired following the discussion.
This study also collected data from a pre-discussion survey administered at the
time of recruitment to gather sociodemographic data from each participant (see
Appendix A). These data provide a quantitative measure of socioeconomic and
demographic variables to help establish the context of focus group responses. In
addition to sociodemographic data, the survey also recorded rates of compliance
for both screening tests and ranked perceptions of susceptibility to both breast and
cervical cancer.
Gathering information using a focus group format provides many advantages.
The open response format elicits responses in respondents' own words to provide
deeper levels of meaning, meaning within context, and expression of personal
attitudes and beliefs. The group setting encourages reactions to other responses
and may stimulate ideas and responses that might not have resulted from individual
interviews. Although a set of predetermined questions provide the structure for the
discussion, focus groups allow for extensive flexibility and in-depth exploration of
perceptions, emotions, and behaviors. The interpersonal interaction also
encourages a feeling of trust that may encourage more personal responses to
sensitive issues such as those involved in breast and cervical cancer. Focus groups
provide an opportunity to include opinions from a broad segment of the pertinent
population including individuals whose educational or physical limitations might
28


prevent them from participating in a written or telephone survey discussion
(Krueger, 1994; Morgan, 1988).
Conversely, focus group methodology has its limitations as well. The small
numbers involved in the discussion make the results difficult to generalize to the
broader population. Likewise, not all women are willing to discuss such intimate
issues in a group setting, making generalization even more questionable. In
addition, the moderator may bias the discussion, and the interaction of respondents
may influence the responses. The open-ended format may elicit responses that are
too vague for adequate interpretation or do not accurately reflect the attitudes and
beliefs that guide behavior. These potential problems can be minimized by a well-
designed moderator's guide and a well-trained moderator (Krueger, 1994).
Recruitment of Participants
Participants were recruited by telephone or personal contact using quota
sampling criteria. A local market research firm made telephone calls to numbers
listed in the Denver Metro Telephone Directory focusing on exchanges associated
with various ethnic populations. A reverse directory was also used to identify
exchanges associated with lower income levels to facilitate recruiting women with
limited or no insurance resources. Because recruiters spoke only English, and some
older Hispanic women were uncomfortable speaking English on the telephone,
family members or friends were sometimes used as interpreters.
29


The original study design designated that 50% of the participants in each focus
group should have had a screening mammogram in the past two years, and 50% of
the women would never have had a mammogram. However, it was difficult to find
women who had never had a mammogram, so the criterion was changed to
differentiate between women who had received a mammogram in the past year (in
compliance with national guidelines) and those who had not received a
mammogram in the past year (not in compliance with national guidelines).
It was also difficult to recruit Anglo and African-American women in the 65 to
74 age group and Hispanic women in both older and younger age groups. In
addition, Hispanic women were particularly reluctant to attend a focus group and
some expressed specific concerns about discussing cancer in a group setting. To
augment telephone recruitment efforts, contacts from senior-housing centers,
senior-activity centers, and senior health clinics set up personal recruitment
interviews. Although personal recruitment was highly successful, use of this
technique resulted in some participants knowing each other. Another barrier to
recruitment was a lack of transportation especially for those women without
private health insurance. Vouchers for taxis were provided to those women
needing transportation since bus service was not feasible. The older Hispanic
women were concerned not only about a lack of transportation, but also about
traveling to an unfamiliar site outside their community. Consequently, the site for
the two older groups of Hispanic women was changed to a church in the Latino
community. This decreased travel distances and enhanced the comfort level for the
older Hispanic participants. All participants received $40 to encourage attendance
and compensate for any personal expenses related to participation.
30


The recruitment technique influenced the composition of focus groups and
minimized participation of women who are unable to use a telephone and those
without listed telephone numbers (although through community recruiting we did
enlist three women without telephones). It is difficult to know whether the lack of
Spanish-speaking recruiters influenced the selection process. All of the Hispanic
participants ages 65 to 74 acknowledged fluency in Spanish, yet only one
participant expressed herself in Spanish during the focus groups, even though the
moderator was bilingual. A local research group focusing on Latino issues,
LARASA (Latin American Research and Service Agency) was consulted and
reported that more than 95% of Latinas in Denver speak English, suggesting that
the Hispanic women who participated in the focus groups were representative of
the Hispanic population in Denver.
Participants
One hundred and ten women, ages 50 to 74, participated in 12 focus groups.
As summarized in Table 4.1, six groups included women ages 50 to 64 (n = 60)
and the other six groups included women ages 65 to 74 (n = 50). The 50 to 74
age range was selected because screening guidelines are the most consistent and
non-controversial for those ages'. Women were grouped according to ethnic or
racial backgrounds (White, African-American, and Hispanic) to explore variation
in screening behaviors attributable to racial or ethnic differences since the literature
suggests that women of race or ethnic group other than White are less likely to
have mammograms and Pap smears than White women. The Hispanic moderator
assessed the degree to which the Hispanic women had adopted American cultural
attitudes. She concluded that the Hispanic women represented a range of cultural
31


perspectives, with almost half of the women retaining traditional Mexican
attitudes, about half of the women being bi-cultural, and a few of the younger
women being fully acculturated.
Age # Health Insurance Race/Ethnicity
50-64 10 Public (Medicaid) or None White
50-64 6 Public or None Black
50-64 8 Public or None Hispanic
50-64 13 Private White
50-64 12 Private Black
50-64 11 Private Hispanic

65-74 7 Public (Medicare) or None White
65-74 7 Public (Medicare) or None Black
65-74 8 Public (Medicare) or None Hispanic
65-74 11 Private (Medicare +) White
65-74 7 Private (Medicare +) Black
65-74 10 Private (Medicare +) Hispanic
Table 4.1: Focus Group Configurations
In addition, differences associated with the ability to afford health care services
were assessed by forming groups based on health insurance. Comparing responses
of participants who have health insurance that covers the cost of a mammogram or
Pap smear (private policy or Medicare with supplemental insurance) with those of
participants who have less than full insurance coverage was intended to enhance
32


our understanding of the role that economic and insurance status play in
encouraging or discouraging screening behaviors in older women.
As a reflection of the recruitment criteria, participants in each group
represented a wide variety of mammography histories, As noted in Table 4.2, 38%
of the participants were in compliance with guidelines, having had a mammogram
within the past twelve months. A total of 70% of the participants had received a
mammogram within the past two years. And 9% had never had a mammogram.
Other inclusion criteria included being in good or excellent health, not having been
diagnosed with cancer previously, not having current breast problems, not having
previously participated in a focus group discussing cancer, and not being
associated with a market research firm, advertising agency or health-related
industry.
MM past yr. MM 1-2 yrs MM > 2 yrs MM Never
Ages 50-64 (n=60) 35% 28.3 % 23.3 % 13.3 %
Ages 65-74 (n=50) 42% 36% 18% 4%
o' i II 5 38% 32% 21% 9%
Table 4.2: Compliance of Participants with Recommended Annual Mammogram
Women aged 65 to 74 accounted for 45% of the participants, Anglo women
accounted for 37%, African-American women for 29%, and Latinas for 34% of
the total respondents. The participants educational level was above the Colorado
mean (U.S. Bureau of Census, 1994) with 36% being high school graduates, and
39% having education beyond high school. The self-reported health status of the
33


groups varied by age, with 30% of the younger women (ages 50 to 64) reporting
their health as excellent as compared to 12% of the older women (ages 65 to 74).
Marital status of the participants was varied widely with 45 % of the women
being married, 27% divorced, 18% widowed, and 9% single. Chi square
calculations were used to determine a weak association between marital status and
type of health insurance (X2 = 17.56, p = .007, Cramers V = .282) with a higher
number of married women having private insurance than would be expected by
chance, and fewer divorced and widowed women having private insurance than
would be expected by chance.
Moderators
Three moderators were recruited based on age and racial or ethnic similarity to
the focus group participants. Having a member of the same ethnic group moderate
a focus group was intended to increase the comfort level and trust for participants
to increase the likelihood that responses would be candid and open. All moderators
were middle aged, well-trained, experienced facilitators, with each moderator
being responsible for four focus groups. A planning session including the
researcher and all three moderators was held to review and modify the moderator's
guide (see Appendix B), and set norms for conducting the discussion groups.
Inevitably each moderators personal style influenced the group process to some
degree even though every effort was made to standardize the group discussions.
Although having three different moderators increased the possibility of the groups
34


not being comparable, the advantages of having moderators with whom the
participants could identify and feel comfortable seemed to outweigh the
disadvantages.
Setting
Ten of the twelve focus groups took place in a market research facility in the
Denver metro area with a specially designed focus group meeting room. The room
had a one-way mirror for observers, visible microphones for audio recording, and a
recessed video camera. Healthy refreshments that were ethnically appropriate were
offered to all participants. Although there was a separate waiting room available
for spouses or children, no family members accompanied the participants,.
In addition, two focus groups were held at a church community center located
in a predominantly Hispanic neighborhood. Similar refreshments were served and
the room was arranged with tables in a circle as in the professional facility.
Although the more familiar site seemed to improve the ability to recruit
participants and was well received by the participants, the lack of professional
audio and video recording resulted in less accurate transcripts than those produced
from the other ten groups.
35


Measurement
Data
Two forms of data were collected: sociodemographic data from the recruitment
interview and survey (see Appendix A); and discussion group responses. The
sociodemographic data was used to establish a context for group discussion
responses, to measure previous screening history for breast and cervical cancer,
and to measure perceived personal susceptibility to breast and cervical cancer.
Pearsons chi square analysis was applied to the demographics to test for any
associations between the variables. The strength of the associations was quantified
by calculating Cramers V. Spearmans rank order coefficients were calculated to
determine whether there was any association between having or not having private
health insurance and compliance with mammography and Pap smear screening
annually and biennially. Chi square analysis was also performed on the nominal
data collected from the focus group discussions to test for associations between
demographic variables and perceived susceptibility to breast and cervical cancer.
Transcripts
Ten of the twelve focus group discussions were recorded both by audio and
video tape, whereas the remaining two focus groups held in the community setting
were recorded only audio tape. Full transcriptions were prepared from the audio
recordings, using the video record for clarification of responses. Field notes
recorded by the researcher included verbal responses, observations of non-verbal
responses, emotional intensity, participant attention and interest level, and notes on
36


the facilitative process. In addition, many responses were recorded on flip charts
for each group by the moderators. This allowed participants to correct or elaborate
on any ideas presented. Immediately following each discussion, the
researcher/observer and moderator debriefed to share general impressions with
each other.
Content analysis of the transcripts was accomplished by coding thematic
content and synthesizing responses from all groups. Coding was done
independently by three individuals including the researcher, an independent
researcher, and the Director of the Colorado Department of Public Health and
Environments Cancer Prevention and Control Program. The coded results were
collated and synthesized and discrepancies in interpretation were resolved. The
content analysis was augmented by reports prepared by each moderator describing
the general impressions of the group discussions and the group and field notes.
Final analysis involved comparing the results between focus groups, looking
particularly for recurrent themes and contrasts between age groups, ethnic groups,
and groups with different health insurance coverage.
Reliability
Reliability in focus group investigation can be improved by using multiple
indicators of the same construct (Kreuger, 1991). Since it is important to this study
to measure individuals' perceptions of susceptibility to breast and cervical cancer, a
question was included in the pre-discussion survey, and a similar discussion
question was included in the moderators discussion guide to provide an in-depth
37


understanding of these perceptions. Similarly, screening behavior was quantified in
the survey and then discussed in the focus groups.
Researcher Influence
In this study, the researcher exerted her greatest influence in the preparation of
the discussion guide, in the instruction of the moderators, and in the analysis of the
data. Having the researcher present as an observer might have diminished candid
responses. Introducing the researcher and explaining her role could produce two
different reactions. On the one hand, introducing the researcher as a registered
nurse and researcher could result in her being viewed as an expert by the
participants. This could have produced some hesitation on the part of the
participants to respond for fear of being incorrect. On the other hand, having an
expert present suggests that the discussion is important, that responses are
valued, and may increase the likelihood of honest responses. Since it is unrealistic
to assume that the researcher was totally neutral and did not influence the group to
some degree, her influence will be considered in the discussion of the interpretation
of the data.
38


CHAPTER 5
RESULTS
This chapter summarizes the data from the survey and focus groups that
identifies factors influencing the participation of older women in screening
mammography and Pap smears. Although it is somewhat artificial to isolate factors
that contribute to health behaviors, for the purposes of analysis, the factors are
categorized as 1) knowledge and information factors, 2) attitudes and beliefs
3) personal factors, 4) competing health problems, and 5) factors inherent in the
medical system. Both qualitative and quantitative data are combined to address
each category. Results from the focus groups do not necessarily reflect unanimous
responses from all members, but they do represent a majority voice unless
otherwise noted.
Knowledge and Information Factors
Group Discussion
Participants in eveiy group participated fully in the discussions directed by the
moderators and spontaneously acknowledged how much they enjoyed the
opportunity to discuss and learn about these kinds of topics among their peers. At
times, the discussions reflected the ethnic backgrounds of the participants and the
moderators. Women in the African-American groups shared stories about home
remedies in the old days. And women in the Hispanic groups often responded to
39


questions with stories illustrating their point and related how little reproductive
health information they had received as young women because the [Catholic]
Church did not want us to know.
Summary of Factors Influencing Screening Mammograms and Pap Smears
Tables 5.9, 5.10, 5.11, and 5.12, located at the end of this chapter, summarize
all of the factors expressed in the focus groups that facilitate or obstruct older
womens participation in screening mammograms and in Pap smears. The legend
indicates whether one individual, several individuals, or the entire group offered
that response, illustrating the magnitude of the responses as reported in of the
following sections.
General Knowledge
In general, the women were more knowledgeable about breast cancer than
cervical cancer. Many expressed that they heard much more about breast cancer
than about cervical cancer, particularly in the popular press and on TV and radio.
Although the women did not necessarily have more accurate knowledge as a result
of hearing more about breast cancer, they felt that they knew more about breast
cancer than about cervical cancer. Consequently, responses to questions about
breast cancer were more prolific than those for cervical cancer.
Important Sources of Health Information
Older women receive health information from a variety of sources. Those
sources considered most important and valuable by the women in the focus groups
are summarized in Table 5.1. The most important sources of health information
varied among the groups. All six groups of younger women reported that they
were likely to seek knowledge from other people with the same problem and from
40


friends. In contrast, among the older women, only the Anglo groups mentioned
this as a principle source of health information. The younger Anglo and African-
American women believed that their own bodies were a major source of health
information on which they based health related decisions. Among the six older
groups, only the two older African-American groups cited their own bodies as a
source of health information, and this was one of the most important sources for
these two groups of women besides. All four groups of Latinas reported that their
families were important sources of health information. Although none of the Anglo
groups mentioned that source, both the one younger and one older African-
American groups that did not have private health insurance reported their families
as sources of information, but they did not rank families as a most important
source as did the Hispanic groups.
The most controversial source of information was the doctor. In all groups,
there was a range of opinion, with some women distrusting doctors, some
considering the doctor as just another source of information, and some considering
the doctor as their best source of health information. Groups, however, tended to
have prevailing thoughts about doctors as information sources. The biggest
difference between the groups was that the majority of the women aged 65 to 74
considered the doctor to be one of their most important sources of health
information. In contrast, only half of the younger women aged 50 to 64 considered
the doctor an important source of health information, while the other half
considered the doctor as merely another resource or not a resource at all.
41


Focus Grout) Most Important Sources of Information
50-64 yrs/Anglo/ no private insurance Friends & Other People with the Same Problem
50-64yrs/Anglo private insurance Friends & Other People with the Same Problem Own Body
50-64/Black no private insurance Friends & Other People with the Same Problem Own Body Doctor (for most women in the group)
50-64/Black private insurance Friends & Other People with the Same Problem Own Body
50-64/Hispanic no private insurance Friends & Other People with the Same Problem Family
50-64/Hispanic private insurance Friends & Other People with the Same Problem Family Doctor (for most women in the group)
65-74 yrs/Anglo/ no private insurance Friends & Other People with the Same Problem Family Doctor (for most women in the group)
65-74yrs/Anglo private insurance Friends & Other People with the Same Problem Family Doctor (for most women in the group)
65-74/Black no private insurance Own Body Doctor (for most women in the group)
65-74/Black private insurance Own Body Doctor (for most women in the group)
65-74/Hispanic no private insurance Family Doctor (for most women in the group)
65-74/Hispanic private insurance Family Doctor (for most women in the group)
Table 5.1: Important Sources of Health Information
42


Although women from both the younger and older age groups reported getting
a lot of information from printed material, especially magazines and pamphlets,
they did not consider printed materials as one of their most important resources. In
addition, they relied on the news media, radio, and television news and talk shows
for their current information even though sometimes that information was
conflicting. Media sources were perhaps the most frequently mentioned source of
health information for these older women, but they did not consider media
resources as important to them as those sources listed in Table 5.1.
Knowledge of Screening Guidelines
Most women of all ages had heard about guidelines that suggested how often
women should have a screening mammogram and Pap smear1; however, only one
or two women in each group had a firm sense what the guidelines were. Many
responded that they werent sure when screening mammograms should begin or
how often they should be repeated. In contrast, most women knew that they
should have Pap smears annually, at least while they were sexually active. There
was a lot of confusion among the older women as to whether they needed to still
have Pap smears if they were no longer sexually active or had undergone a
hysterectomy. Women reported receiving conflicting advice from physicians on
these issues, and found Medicares biennial payment policy contradictory to annual
guidelines for mammograms. Some women believed that [i]f Medicare only pays
every other year, it [mammogram] must not be needed every year, while other
women suggested that women need to lobby Medicare to get them to go along
with the guidelines.
43


Risk Factors for Breast Cancer
Women expressed confusion about risk factors for breast cancer2. As
summarized in Table 5.2, in 75% of the groups most of the women knew that
heredity (family history of breast cancer) was a risk factor for breast cancer. In two
groups, those composed of older African-American and older Hispanic women
with supplemental health insurance, none of the women cited any correct risk
factors, although that same African-American group later cited no family history as
a reason why they were less susceptible to breast cancer.
Correct Risk Factors # Focus Groups Identifying Associated Factors # Focus Groups Identifying
Family History 9 Diet 9
Not Breastfeeding 7 Environment 7
No Children 5 Emotions/Stress 5
Cyclical Estrogen 5 Incorrect Factors
Advancing Age 2 grps + 2 indiv. Breast Trauma 6
Smoking 5
Table 5.2: Number of Focus Groups Identifying Risk Factors for Breast Cancer
The other commonly reported correct risk factors were not breast feeding,
not having children, and taking estrogen. Although a majority of women had
heard that breastfeeding was associated with breast cancer, many were confused
about whether it increased or decreased a womans risk. Women in the five groups
that were aware that long-term exposure to cyclical estrogen increased the risk of
developing breast cancer, had many questions about the types of hormone
exposure that increased risk.
44


Reported as frequently as these risk factors were three factors highly
associated with breast cancer but not proven to be causal factors. Three-fourths of
the groups mentioned diet, especially a high fat diet as a risk factor. Over half of
the groups considered exposure to environmental toxins, particularly those
contained in foods and water, as a risk factor. Five of the twelve groups discussed
how negative emotions, a negative attitude, or stress could increase the risk of
cancer.
The least known risk factor was advancing age. Only two groups, the older
Anglo and older African-American women having only Medicare, knew that age
was a risk factor; one other group concluded that all ages would be at the same
risk; and another group persisted in denying that age could be a risk factor despite
the arguments of two women to the contrary.
Half of the groups incorrectly thought that trauma to the breast (possibly even
the compression during a mammogram) could cause breast cancer. And five
groups erroneously thought that smoking was a risk factor for breast cancer.
Risk Factors for Cervical Cancer
Although the groups were specifically asked about risk factors only for breast
cancer, many groups talked spontaneously about the risk factors for cervical
cancer despite the fact that many women in each group knew very little about
cervical cancer. The most frequently cited risk factor for cervical cancer3 was
heredity. Five out of the six older groups associated cervical cancer with sexual
activity; multiple sexual partners or promiscuity were particularly seen as a risk
factors for younger women like our daughters. In contrast, only one of the six
younger groups mentioned sexual activity as a risk factor. The older Hispanic
women thought that "not taking care of yourself', lower moral standards, and poor
hygiene might cause cervical cancer. The African-American groups knew very little
45


about cervical cancer and the associated risk factors. Three of the older groups
knew that smoking was a risk factor, and two older groups and one younger group
knew that age was a factor. The other seven groups thought that age was not a
risk factor.
Reduction of Risk Factors for Breast Cancer
When asked how to reduce the risks of breast cancer, all groups but two
Hispanic ones cited reducing fat in the diet. Other responses offered by the
majority of groups included increasing exercise, doing monthly self exams, living a
healthy lifestyle, and having a regular check-up with a mammogram. Interestingly,
no Hispanic group mentioned increasing exercise as a way to decrease the risk of
breast cancer.
Tests to Detect Breast Cancer
All groups knew that the mammogram and breast self exam were tests for
detecting breast cancer. Although when asked about tests that detect breast
cancer, five of the twelve groups did not mention the clinical breast exam
performed by the doctor, many of them referred to the clinical breast exam at other
times during the discussion. It appeared that most women were familiar with the
clinical breast exam but did not automatically associate it with detecting breast
cancer.
Tests to Detect Cervical Cancer
All women knew of the Pap test and the majority understood that it tested for
cervical cancer. However, a few women were not sure what it tested, and a few
others thought it tested for other sexually transmitted diseases as well as for
cervical cancer.
46


Advantages of Early Detection of Breast Cancer
When questioned about the advantages of early detection, many women in each
group knew that early detection of breast cancer could reduce the severity and
length of treatment. They realized that it was beneficial to detect breast cancer
before it spread beyond the breast and that early detection enabled a woman to
undergo a lumpectomy rather than having a radical mastectomy. One older
participant commented, "[t]hat's the whole idea behind having a mammogram
every year". However, in most groups, there were a few women who remained
skeptical about early detection being beneficial, with responses like, "[y]es, that's
what they say", or "[a] cure depends more on attitude than on early detection".
Advantages of Early Detection of Cervical Cancer
In contrast to the lively discussion about the early detection of breast cancer,
the women were very quiet when asked about early detection of cervical cancer.
When asked why they did not respond, the women suggested that [w]e just dont
know much about it. A few women knew that early detection gave women more
treatment options and increased the likelihood of a cure. But most women didn't
know whether early detection made a difference in the treatment or cure of
cervical cancer, or whether cervical cancer could even be cured. Based on the
discussion in a few groups, it was clear that many women were confused about the
difference between cervical and ovarian cancer, and some reported that the story
of Gilda Radnors4 death, that they thought was due to cervical cancer, made them
especially fearful of getting cervical cancer.
47


Attitudes. Beliefs, and Motivational Factors
Fear and Denial of Breast Cancer
Fear and denial were most frequently mentioned when the women were asked
what was foremost in their minds when they thought about breast cancer. Fear
associated with breast cancer was a prominent attitude expressed in all groups,
with comments such as [w]hen you hear about someone with breast cancer, the
first thing you think about is will it happen to me? and [o]nce you get it, you
never get rid of it. Women reported many specific fears: fear of death, fear of
suffering, fear of disfigurement, and fear of how cancer changes the way a woman
perceives herself and the way others perceive her. The expression of fear was
universal for both age groups, for all three ethnic groups, and for both the insured
and uninsured groups. Only a handful of women expressed a more positive attitude
such as, I know several people who beat breast cancer, so I have a hopeful
feeling. It is interesting, however, that the two older Hispanic groups were
particularly concerned about the psychosocial implications of breast cancer,
suggesting that it is "devastating to remove the breast" and that breast cancer
"hurts a woman very deeply".
In the process of discussing prominent feelings and thoughts about cancer,
consistently a few women in each group expressed a sense of denial. "I hope I
won't get it", and I just don't want to talk about it or think about it" were
attitudes aired by some women. This attitude was not confined to any one group
although it was the sentiment of a minority of the participants.
When discussing specific barriers to screening mammography, fear of the
results was the most frequently cited reason not to have a mammogram. As one
participant expressed, You dont rush in to find out you have cancer. This isnt
48


the lottery were talking about!. This fear was prevalent in most groups, although
several women reminded their cohorts, [I]ts better than being dead.
Foremost Thoughts and Beliefs about Cervical Cancer
When asked what thoughts about cervical cancer first came to mind, the most
frequent response was, "I don't know much about it" or, [w]e dont hear as much
about it as we do breast cancer. Its just not a big problem. Another prevalent
belief was that hysterectomies were the only treatment for cervical cancer. Many
women implied that they had undergone hysterectomies, although the exact
number of women that this affected was not recorded. All of the older women's
groups wondered about the relationship between hysterectomies and cervical
cancer. Are there so many hysterectomies because of positive Pap smears? Are
you still susceptible to cervical cancer after a hysterectomy? A few older Black
women even wondered if the high number of hysterectomies reflected an effort to
control the reproduction of African-Americans.
A few individual women expressed generalized fear of cervical cancer,
suggesting [i]ts one of the worst cancers. It feels like youre doomed. The
younger Anglo groups thought that cervical cancer was less of a threat because of
the lower incidence and a high likelihood of cure. In contrast, both younger
Hispanic groups expressed the belief that a diagnosis of cervical cancer means the
end". Interestingly, one older Hispanic group suggested that you would know you
had cervical cancer earlier than breast cancer because "[y]ou know your own
body". This same group suggested that [s]ome women might not recognize the
signals for cervical cancer and would put off medical attention as a result.
49


Potential to Prevent and Cure Breast and Cervical Cancer
Most women agreed that you cannot prevent breast or cervical cancer, but that
[y]u can help your odds by reducing some risk factors and getting screened to
detect a cancer at its earliest stage. However, two younger Anglo women
expressed the belief that its just bad luck. There were a few women who
believed that [cjervical cancer can be handled, but with breast cancer, thats it,
suggesting that there was little that could be done to influence the development of
breast cancer. Similarly, a few women expressed the belief that regular Pap smears
could detect changes in cervical cells and treatment of early changes could actually
prevent cervical cancer from developing. Some women lamented that [tjheres no
test to find changes in the cells in the breast before they get to the cancer stage.
Attitudes about the potential for breast and cervical cancer to be cured varied
greatly between groups and among individual participants. In general, there were
mixed opinions among group participants. Some believed that no cancer was
curable, that "[o]nce you get it, you never get rid of it" or that "[o]nce they open
you up, that's it". However, many women strongly believed that both breast and
cervical cancer were curable if detected and treated early, before the cancer
spread. Other women were not certain about the issue. One woman stated that
"TV shows many more breast cancer cures than cervical cancer", suggesting that
breast cancer may be more curable than cervical. As noted above, many Hispanic
women considered cervical cancer "terminal", and those who did consider it
curable all stated that it was only curable if treated early, before it spreads
through the body.
Perceived Susceptibility to Breast Cancer
To assess personal susceptibility to both cancers, participants were asked both
in the survey and in the focus group to rank their susceptibility as compared to
50


other women, as either "higher", "the same", or "lower". In the focus groups, the
women were also asked to give reasons why they ranked themselves accordingly.
The rankings expressed during the focus groups differed from the rankings
assigned during the recruitment survey, although chi square calculations showed
that the differences were statistically not very significant (X2 = 68.06,
p = .000, Cramers V = .57). Figure 5.1 compares the two sets of rankings for
breast cancer susceptibility, showing what percentage of all participants ranked
themselves in each category.
Higher Same Lower
Risk as Compared to Other Women
Figure 5.1: Perceived Susceptibility to Breast Cancer: A Comparison of Responses
In both the survey and focus groups, the majority of women reported their
susceptibility to breast cancer as being the same as or lower than the susceptibility
of other women. All but two of the women who ranked themselves as higher in
susceptibility did so because of a family history of breast cancer. The other two
51


women ranked themselves higher because of not having children. Anglo
respondents accounted for the majority of women ranking themselves as being
more susceptible to breast cancer (50% in the survey and 61% in the focus
groups).
No family history (of breast cancer), a positive attitude, and a healthy
lifestyle were the most frequent justifications for ranking susceptibility as lower.
A positive attitude was expressed as either I dont think Ill get it or I dont
think about it. A healthy lifestyle meant eating properly, getting exercise, not
smoking, and not drinking alcohol. Several women also mentioned getting a
regular physical exam and a mammogram every year as the reason that they were
less susceptible to breast cancer.
Table 5.3 summarizes the results for chi square calculations to determine the
presence and strength of association between perceived susceptibility to breast
cancer and age, ethnic background, type of insurance, and having an annual
mammogram. As indicated, there is no association between age and perception of
susceptibility to breast cancer. There is a modest association between ethnic
background and perception of susceptibility, but only for the focus group data,
with the chi square contingency table indicating a higher than expected number of
Anglo women reporting higher susceptibility, a higher than expected number of
African-American women reporting lower susceptibility, and a higher than
expected number of Hispanic women reporting their susceptibility as the same as
other women. A weak association between perceived susceptibility and having an
annual mammogram is evident for data derived from the focus groups, with the
contingency table indicating a higher than expected number of women who ranked
their susceptibility as same getting an annual mammogram, and a higher than
expected number of women who ranked their susceptibility as lower getting a
mammogram less frequently than every year.
52


Perceived Susceptibility to Breast Perceived Sus Cancer as Reported in Focus Groups Cancer as Re ceptibility to Breast ported in Survey
X2 p value Cramers V X2 p value Cramers V
Age .952 .621 .094 .41 .812 .063
Ethnicity 13.89 .008 .252 5.64 .228 .164
Insurance 5.61 .230 .160 3.81 .431 .135
Annual MM 6.57 .037 .246 3.96 .138 .194
Table 5.3: Association between Perceived Susceptibility to Breast Cancer and
Age, Ethnic Background, Type of Health Insurance, and Annual Mammogram
Interestingly, three groups identified having regular exams, particularly
mammograms, and doing monthly self breast exams as reasons for their lower
susceptibility to breast cancer. Although there was no association demonstrated
between the type of health insurance and perceived susceptibility to breast cancer
among the women as a whole, the participants of these three groups had private
health insurance and represented each of the three ethnic groups in the study.
Table 5.4 summarizes the reasons given for individual susceptibility rankings in
the focus groups, which reveal some patterns of reasoning that vary by ethnic
group. Anglo and African-American groups most often used the absence or
presence of a family history of breast cancer to determine susceptibility. Even so,
individual interpretation varied, with some women reasoning that no family history
of breast cancer made them equally susceptible as other women, while others
reasoned that no family history made them less susceptible than other women. In
addition, a few individuals believed that a family history of any type of cancer
increased their susceptibility to breast cancer.
In contrast, the Hispanic groups did not consider a family history of breast
cancer to be the most important criterion for ranking susceptibility to breast
53


cancer. All four Hispanic groups focused on lifestyle and taking care of themselves
in their reasoning processes. The reasoning of women in these four groups is
illustrated by the rationales given by the women in the younger Hispanic group
with no health insurance or only public health insurance. Four of these women
ranked their susceptibility as higher because [a]t our age we get lax about seeing
the doctor, so we dont go until its too late, [w]e have no insurance, and
[w]e put other things first, ourselves last. In that same group, however, two
women believed they were less susceptible to breast cancer because [w]e take
better care of ourselves [than when we were younger], especially our diet and
[o]ur kids are gone, so now we have more time for ourselves. Similarly, only
the Hispanic groups considered advancing age as the reason they were as
susceptible to breast cancer as other women because [a]ge is a risk, but older
women take better care of themselves. Another prevalent theme among the
Hispanic groups was that their risk was the same because [a] woman is a
woman.
Anglo African-American Hispanic
Family History prevalent prevalent minimal
Positive Attitude somewhat minimal prevalent
Lifestyle somewhat somewhat prevalent
Regular Exam & Mammogram somewhat (1 group only) somewhat (2 groups) somewhat (1 group only)
Table 5.4: Criteria Used to Rank Personal Susceptibility to Breast Cancer
Perceived Susceptibility to Cervical Cancer
In comparing perceptions of susceptibility to breast cancer with perceptions of
susceptibility to cervical cancer, there is a moderate association between the two
sets of perceptions as reported in the survey results (X2 = 41.22, p = .000,
54


Cramers V = .45) and a weak association between the perceptions reported in the
focus groups (X2 = 10.49, p = .033, Cramers V = .22). In the survey, 72.3% of
the women ranked their susceptibility equally for both breast and cervical cancers,
and in the focus groups, 53.2% of the women ranked their susceptibility equally
for both cancers.
As illustrated in Figure 5.2, rankings of susceptibility to cervical cancer
changed for many women between the survey and focus groups. Chi square
calculations indicate a low to moderate association (X2 = 33.1, p = .000, Cramers
V = .40), suggesting that the differences have statistical significance. However, in
one focus group, all seven older Hispanic women ranked their susceptibility as
lower following a discussion that associated cervical cancer with low morals,
sexual promiscuity, and not taking proper care of oneself. Some women in the
group responded, I hope my risk is lower.
As with breast cancer, the majority of women did not consider themselves at
high risk for cervical cancer. In the focus groups, 88.2 % of the women ranked
their susceptibility to cervical cancer as either the same or lower than the
susceptibility of other women, and in the survey, 96.2 % of the women ranked
their susceptibility as either the same or lower. Of the women ranking their
susceptibility as higher in the focus groups, 7 of the 13 were Hispanic. Although
several women reported a family history of cervical cancer as their reason for.
ranking their susceptibility as higher, one ranked herself higher because she had not
had children, and three ranked themselves higher because of their age. A few of
these women reasoned that older women would have had more sexual intercourse
during their lifetime than younger women and would consequently be more likely
to get cervical cancer.
55


70
Higher Same Lower
Risk as Compared to Other Women
M Survey
H Focus Grp
Figure 5.2: Perceived Susceptibility to Cervical Cancer: A Comparison of
Responses between Survey and Focus Group Responses
Table 5.5 summarizes the results of chi square calculations to determine the
presence and strength of association between perceived susceptibility to cervical
cancer and several demographic factors. As noted, there are no associations
evident between the rankings reported in the survey and any demographic factors.
There are also no associations between perceived susceptibility as reported in
either setting and compliance with having a Pap smear every one to three years. In
contrast, weak associations exist between perceptions of susceptibility to cervical
cancer reported in the focus groups and age, ethnic background, and type of health
insurance.
56


Perceived S Cancer as E usceptibility to Cervical Perceived Susceptibility to Cervical Reported in Focus Groups Cancer as Reported in Survey
X p value Cramers V X p value Cramers V
Age 8.14 .017 .272 .82 .663 .088
Ethnicity 14.48 .006 .257 1.83 .768 .093
Type Ins. 10.9 .004 .315 4.24 .120 .201
Pap <3yr 1.17 .558 .103 3.66 .300 .182
Table 5.5: Association between Perceived Susceptibility to Cervical Cancer and
Age, Ethnic Background, and Type of Health Insurance
In the focus-group data, the chi square contingency table for the association
between age and perceptions of susceptibility shows a higher than expected
number of older women (72%) ranking their susceptibility as lower. In contrast, in
the survey data, similar numbers of younger and older women (46%-52% for each
category) ranked their susceptibility to cervical cancer as the same or lower.
Likewise, the contingency table for the association between ethnic background and
perceived susceptibility to cervical cancer in the focus groups indicates a higher
than expected number of Anglo women ranking their susceptibility as lower, a
higher than expected number of African-American women ranking their
susceptibility as the same, and a higher than expected number of Hispanic women
ranking their susceptibility as higher. The contingency table for the association
between the type of health insurance and perceived susceptibility to cervical cancer
in the focus groups indicates a higher than expected number of women with only
Medicare or Medicaid coverage ranking their susceptibility as lower, and a higher
than expected number of women with private insurance ranking their susceptibility
as the same.
57


Efficacy of Screening Mammography
In response to being asked to assess the effectiveness of screening
mammography, most women believed that screening mammography was
moderately to highly effective. They qualified their responses by saying that the
effectiveness depended on the person doing the exam and the person reading or
interpreting it. Some felt that accuracy depended on breast size. It was clear that
media coverage of missed tumors (false negatives) had eroded the confidence of
some women in several groups. As noted in Table 5.9, three women who had
experienced erroneous reports (either false positives or false negatives) firsthand or
through a close acquaintance's experience had lost all confidence in
mammography, to the extent that all three said they would not get mammograms
themselves in the future. In discussing the effectiveness of mammograms, many
women, across all groups, expressed concern about potential harm from
mammograms from both the radiation and from the physical manipulation and
applied pressure, suggesting that harm from the mammogram was a barrier to
receiving regular, screening (see Table 5.9).
Efficacy of Pap Smears
The general consensus among all participants was that Pap smears could be
very effective in detecting cervical cancer. However, many women had read local
newspaper reports questioning the quality of smear interpretations among various
laboratories. As a result, many women were concerned about having their Pap
smears interpreted at a reliable laboratory, and several women mentioned that I
would have any abnormal results checked a second time by a different lab.
58


Personal Factors
Procrastination
As indicated in Table 5.9, individuals in three focus groups suggested that
women who consider themselves at low risk for breast or cervical cancer (i.e.,
having no family history of the disease) are likely to procrastinate getting a
mammogram or Pap smear. Their attitude is reflected in the comment, [y]es, Ive
been told to have one, and I will sometime. Women explained that this decision
to delay screening was often due to getting busy with other things that are more
important at the time. One woman reported that she procrastinated because she
disliked being told I have to do something, while another woman felt that Pap
smears are the easiest to let slide by because you dont feel the pain until its too
late.
Embarrassment
Embarrassment and modesty were mentioned by at least one or two women in
each group as reasons that women might not get a mammogram or Pap smear (see
Tables 5.9 and 5.11). The older women were polarized on this issue either stating
that, [ajfter all these years, Im used to it, or [IJts still bothersome. Two
participants refused to have Pap smears because I had a bad experience way back
when.
In general, the women found Pap smears more embarrassing than
mammograms. Three-fourths of the African-American and Hispanic groups
discussed embarrassment as a barrier to getting Pap smears. Many women
expressed a preference for having a Pap smear performed by a female physician or
nurse practitioner to decrease embarrassment. However, a few women preferred
their male doctors. Most women believed that it was the gentleness and sensitivity
59


of the person performing the Pap smear that was most important in making them
feel comfortable with the procedure. Previous experiences with insensitive
practitioners stopped two women from continuing to have Pap smears.
Pain and Discomfort during Mammography
As summarized in Table 5.9, three-fourths of the groups reported that
mammography was uncomfortable or painful. It was the lone voice in a group that .
proclaimed Its never bothered me. Women became animated when discussing
this topic with comments such as, Does it have to hurt so much?, They give you
a squish and boom!, You mean the tortilla torture?, and If thats how they
tested for prostate cancer, thered be a blood test by now!. Interestingly, only a
handful of women saw pain as a deterrent to future mammograms, saying, I had
one once it was excruciating never again. Most women felt the benefit of early
detection outweighed the painful or highly uncomfortable experience.
Pain and Discomfort Associated with Pap Smears
As noted in Table 5.11, the two older African-American and two of the
Hispanic groups of women complained about pain and discomfort associated with
Pap smears. Although only a few women in each of these groups complained about
the discomfort, it was a major deterrent for these women. One women specifically
mentioned that she could no longer comfortably get into the lithotomy position,
and another women with chronic rheumatoid arthritis no longer had Pap smears
[bjecause of my arthritis.
60


Competing Health Problems
Only women who considered themselves in good or excellent health were
included in this study. Chronic conditions that the women reported included
diabetes, obesity, heart conditions, rheumatoid arthritis, and stroke. Only three
women, two with recent strokes and one with rheumatoid arthritis, reported that
that their illnesses interfered with their receiving screening mammograms and Pap
smears (see Tables 5.9 and 5.11). Both of the women who had suffered strokes
stated that they intended to resume regular screening when fully recovered, and the
woman with arthritis stated that she was motivated by the focus groups to ask her
rheumatologist about getting screened.
Factors Inherent in the Medical System
Physician-Related Factors
Over 89% of all focus group participants reported having a regular physician,
usually a general practitioner or internist. The majority of those without a regular
physician were 50 to 64 years old and did not have insurance. Chi square analysis
failed to demonstrate an association between having a regular physician and
compliance with annual screening mammography (X2 = 2.64, p = .104, Cramers
V = .155). However, a weak association does exist between having a regular
physician and getting a Pap smear every one to three years (X2 = 4.43, p = .035,
Cramers V = .20).
As noted in Table 5.8, several participants aged 65 and older reported being
motivated to get screened for breast and cervical cancer by the recommendation or
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insistence of their physicians. Several women reported that I would get one if the
doctor said to and I would not get one if he [the doctor] had any hesitation at
all. Six women did not get mammograms because their doctor had not
recommended it, although one of those women had not seen a doctor in the past
five years because she had not had any health problems (see Table 5.9).
Many women, from both age groups and all three ethnic backgrounds,
complained about not having enough time with their doctor, feeling rushed, or
being treated impersonally. However, none of them felt that this interfered with
their receiving a mammogram. In comparison, the insensitivity or roughness of the
doctor made several women reluctant to get a Pap smear (see Table 5.11).
All but a few women agreed that they would be comfortable asking their doctor
about getting a mammogram or clinical breast exam. Fewer women were
comfortable requesting a Pap smear, although most could not imagine that being
necessary since [t]hey just do it you dont have a choice.. When it came to
breast self exams, many women did not consider the doctor to be the best source
of advice on technique. They preferred printed materials or nurses for such
instruction and for answering questions.
Prescription Coercion
Several women remarked that I had to get a Pap to get my Premarin [refilled]
(see Table 5.10). Only a handful of women reported having to schedule a
mammogram before having their estrogen prescriptions refilled (see Table 5.8).
Secondary Access Barriers
As noted in Tables 5.9 and 5.11, very few women reported access
complications as barriers to obtaining a screening mammogram. However, two
women reported that transportation problems interfered with their getting a Pap
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smear, and several women commented that Pap smears took more time because
you have to go to a different doctor for it. Many women were motivated to
comply with recommended mammography because the referring physicians office
scheduled the mammogram for them on the spot.
The Effects of Health Insurance
In the focus groups, women reported that the cost of a mammogram or the lack
of insurance to cover the full cost of a mammogram obstructed their ability to
receive an annual screening mammogram. This was most prevalent in the group of
younger Anglo women, 70 % of whom did not have any health insurance.
Interestingly, cost was voiced as a concern by many Anglo and African-American
women regardless of their insurance status. In contrast, only two Hispanic women
mentioned cost or lack of adequate insurance as a concern or barrier to
mammography. Cost and insurance were mentioned as barriers to getting a
regular Pap smear only by the younger Anglo women lacking adequate health
insurance.
Table 5.6 summarizes the number and percentage of women with and without
private health insurance who received a mammogram either in the past year or
within the past two years (inclusive). Similarly, Table 5.7 summarizes the number
and percentage of women with and without private health insurance who received
a Pap test within the past year or cumulatively within the past two years. The
pattern evident from these tables indicates that those women with private insurance
have higher rates of utilizing both screening tests than do those women without
private insurance. Sample size is too small to determine whether there is any
significance difference attributable to insurance status.
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Had MM in past year Had MM in past 2 years
No Private Insurance Private Insurance No Private Insurance Private Insurance
N # % N # % N # % N # %
Younger Anglo 10 0 0% 13 3 23% 10 4 40% 13 6 46%
Older Anglo 7 3 43% 11 3 27% 7 3 43% 11 11 100

Younger Black 6 4 67% 12 6 50% 6 4 67% 12 11 92%
Older Black 7 2 29% 7 5 71% 7 4 57% 7 6 86%

Younger Latino 8 2 25% 11 7 64% 8 3 38% 11 10 91%
Older Latino 8 3 38% 10 5 50% 8 4 50% 10 9 90%
Table 5.6: Cumulative Percentages of Women Receiving Annual or Biennial
Screening Mammograms According to Type of Health Insurance Coverage
Had Pap test in past year Had Pap test in past 2 years
No Private Insurance Private Insurance No Private Insurance Private Insurance
N # % N # % N # % N # %
Younger Anglo 10 1 10% 13 5 39% 10 3 30% 13 9 69%
Older Anglo 7 3 43% 11 6 55% 7 4 57% 11 9 82%

Younger Black 6 4 67% 12 6 50% 6 4 67% 12 9 67%
Older Black 7 2 29% 7 6 86% 7 5 71% 7 7 100

Younger Latino 8 4 50% 11 4 36% 8 7 88% 11 10 91%
Older Latino 8 4 50% 10 7 70% 8 4 50% 10 10 100
Table 5.7: Cumulative Percentages of Women Receiving Annual or Biennial
Screening Pap Tests According to Type of Health Insurance Coverage
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Summary Tables
Tables 5.8, 5.9, 5.10, and 5.11 summarize all of the factors that influence the
participation of older women in screening mammograms and Pap smears. The
patterns depicted and discussed in the final chapter illustrate those factors that
were relevant to the majority of the women, those that were relevant to a specific
cluster of focus groups, and those that were relevant only to a few individuals.
Since the focus group data is primarily qualitative in nature, these tables offer a
valuable approximation of the magnitude and distribution of responses.
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Focus Group # KNOWLEDGE 1 2 3 4 5 6 7 8 9 1 0 11 12
Guidelines XX XX
Risk Factors X X XX XX
Symptoms XX X X X X X X
Family History X X XX X X
T Incidence Brst Ca XX
Media Attention XX X XX
ATTITUDES
Prevention X X XX XX XX X X
Early Detection XX XX XX X X XX XX XX XX XX
Peace of Mind X X X X XX
Efficacy of MM X XX X
Fear of Cancer X
Curability/Survival XX X X
Family Influence XX XX
PERSONAL
Know Own Body XX X
Fm important X X
ACCESS/SYSTEM
Doctor Recommend X X XX XX XX
Doctor Insisted X XX X X
Part of Physical X X X XX XX X
Reminder Cards X X X XX XX
To get Estrogen Rx XX
Free Mammogram XX
Note: x = one individual; xx = several individuals; X = consensus of the group
Table 5.8: Summary of Reasons to Have a Mammogram
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Focus Group # KNOWLEDGE 1 2 3 4 5 6 7 8 9 10 11 12
Conflicting Info XX X XX XX X
No Symptoms XX X X
No Family History X X X
Dont Need Annual XX XX XX XX X
Low Risk X X X XX X
Do Self Exam X XX X
ATTITUDES
Fear of Results X X X X XX XX X XX X X
Fear of Radiation X X X XX XX
Not Necessary X X X X X X XX
MM cause cancer X X XX X
Not Accurate X XX X XX
You Know Body Best X
I dont care XX
Refuse treatment X X
PERSONAL
Painful XX X X XX X XX XX XX XX
Pain as Deterrent X X XX
Embarrassing XX X X
Machine cold X
Too busy X X X
Procrastination X XX X
ACCESS/SYSTEM
No Insurance X XX XX X
Cost X XX XX XX X
Medicare q 2 years XX XX
Doc did not rec XX X XX X
Other health prob X X X
Table 5.9: Summary of Reasons for Not Getting a Mammogram
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Focus Group # KNOWLEDGE 1 2 3 4 5 6 7 8 9 10 11 12
Guidelines X XX XX
Risk Factors XX XX
Symptoms X X
Family History X
ATTITUDES
Prevention X XX XX XX XX X
Early Detection XX XX XX XX X
Peace of Mind XX XX XX XX XX XX
Survival XX
PERSONAL
Im worth it X
ACCESS/SYSTEM
Refill Estrogen XX XX XX
Doc Recommended X X XX
Routine X XX XX XX XX XX
Reminder Card X
Note: x = one individual; xx = several individuals; X = consensus of the group
TablelO: Summary of Reasons to Have a Pap Test
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Focus Group # 1 2 3 4 5 6 7 8 9 10 11 12
KNOWLEDGE ____ ________________
Lack of Information XX
Not Sexually Active XX X XX
Hysterectomy XX XX XX XX
No symptoms XX XX
ATTITUDES
Fear of Test Results X
Dislike Procedure XX XX X XX
Bad experience X XX
Not Accurate XX XX
Not Necessary q yr X XX
Know Own Body X X
PERSONAL
Gender of Doctor XX XX X XX XX
Pain/Discomfort XX XX XX XX
Position X
Embarrassing XX XX XX XX X XX XX XX
Procrastination XX XX XX XX
ACCESS/SYSTEM
Attitude of Doctor XX XX XX
No Doctor X
No Insurance XX
Cost XX
Doc did not Rec X
Other health prob X X
Needs Diff Doctor X X XX
No transportation X X
Table 5.11: Summary of Reasons for Not Getting a Pap Test
69


CHAPTER 6
DISCUSSION AND CONCLUSIONS
Introduction
The results of this study clearly indicate that multiple factors influence older
women to participate in screening mammograms and Pap smears. This chapter
examines the way in which these multiple factors interact to impact screening
behavior by focusing on the meaning of the individual factors as well as the
meaning of their interactions. Analysis of these interactions will occur within the
context of the health behavior model, the theory of reasoned action, and the
transtheoretical model. The conclusions summarize the findings and their
implications for interventions and further research.
Knowledge and Information Factors
The Benefit of Early Detection
Breast Cancer. Of all the factors that motivate women to get mammograms,
the one most frequently cited by women of all ages in this study is the benefit of
early detection and treatment. Understanding the value of early detection can move
women into the transtheoretical action and maintenance phases (i.e. getting a
screening mammogram) by balancing or neutralizing the fear of finding cancer.
Since all of the women in the study acknowledged a fear of cancer, but not all of
70


the women in the study realized or believed that detecting cancer early improves
the chance for survival, it appears that there is still a need for older women to learn
more about early detection from a reliable source. Increasing the number of
women who know that early detection saves lives should be a primary objective of
any intervention aimed at increasing the number of older women regularly getting
screening mammograms.
Cervical Cancer. As with breast cancer, understanding the advantages of early
detection and treatment of cervical cancer motivates some older women to get Pap
smears. However, the results of this study do not show it to be such a powerful
factor influencing Pap smears as it is for mammography. This may be due to Pap
smears being a routine part of the annual physical exam, thereby removing most
older women from the decision-making process and granting that decisional
authority to the medical system .
Conflicting Information
Older women base their health decisions not only on the advice of their
physicians, but also on medical news reported in the media, and on medical advice
from friends, family, and other acquaintances with seemingly pertinent information.
Hispanic women are particularly reliant on their family for health information and
guidance, and women ages 50-65 are likely to rely on health information from
friends and others with the same problem. Combining health information from such
a wide variety of lay sources with information from physicians and public health
organizations can result in inconsistencies. This appears to have happened with
breast and cervical screening guidelines for older women. Consequently, older
women find themselves confused about who should be having a mammogram or
Pap smear and how often.
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The policy of Medicare paying for biennial, not annual, mammograms for
women 65 and older further complicates the issue. Women assume that if annual
mammograms were necessary, Medicare would be paying for them. Since many
older women consider themselves at low risk for breast cancer anyway, it is
reasonable for them to conclude that Medicares payment policy promoting
biennial mammograms supersedes the recommendations for annual mammograms.
This conflicting information interferes with older women obtaining recurrent
screening mammograms that are the most effective in detecting a cancer in its
more treatable, early stages. Conflicting information also undermines the validity of
all guidelines, implying that perhaps mammography may not really be beneficial. As
incorporated in both the health belief model and theory of reasoned action, a
strong belief in the benefit of the behavior is essential to promotion of the
behavior.
Risk Factors and Perceived Susceptibility to Breast Cancer
Media attention has focused on the genetic predisposition toward breast cancer
and modifiable, but not necessarily causal risk factors, such as diet, exercise, and
exposure to hormones and environmental toxins. As a result, most women think
that a family history of breast cancer is the most significant risk factor for breast
cancer and are unaware that advancing age is another significant risk factor.
Despite their awareness of other risk factors such as not breastfeeding, not having
children, and repeated exposure to cyclical estrogen, most women use the absence
or presence of a family history of breast cancer to determine their individual
susceptibility. This appears to apply particularly to Anglo and African-American
women. In contrast, Hispanic women are more likely to consider lifestyle rather
than family history determinants in ranking their susceptibility to breast cancer, but
72


it is not clear whether that pattern reflects a difference in their understanding of
risk factors or their cultural perspective of causative factors of disease.
Women from all three ethnic cultures use the familiar associated risk factors of
diet, exposure to environment toxins, and stress to determine their susceptibility to
breast cancer. Generally, these factors are mitigating or additive factors, used to
adjust the basic ranking determined by the presence or absence of a family history
of the disease. For example, a woman might rank her susceptibility lower because
she eats a low-fat diet even though her mother died of breast cancer.
The shift between the rankings of perceived susceptibility reported in the survey
and those reported in the focus groups, while not statistically significant, is most
likely related to the discussion of risk factors that preceded the ranking of
susceptibility in the focus groups (see Appendix 2). Since all of the women had just
been reminded by their peers that family history was an important risk factor for
developing breast cancer, they may have weighted that determinant of
susceptibility more heavily than other risk factors. In addition, data gathered using
two different methods can be expected to vary, and responses in focus group are
subject to the influence of the peer group. The combination of recent exposure to
information about risk factors for breast cancer and peer influence explain most of
the shift in patterns of perceived susceptibility.
In essence, this suggests that older women, being unaware of age as a risk
factor, are consider themselves less susceptible to breast cancer than they are in
reality. The HBM perspective suggests that women who feel that they are at a low
risk are less likely to obtain regular screening mammograms. Such a conclusion is
supported by several womens explanation that women who are low risk (no
family history of breast cancer) do not need an annual mammogram. Additionally,
this explanation has some weak statistical support based on the focus group data.
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Risk Factors and Perceived Susceptibility to Cervical Cancer
Similarly, women are most familiar with heredity as a risk factor for cervical
cancer. Although most women who ranked their susceptibility as higher did so
because of a family history of cervical cancer, many women ranking their
susceptibility as lower did not have any reason for their ranking, or hoped that
their susceptibility was lower. The older (65 to 74 year old) Hispanic women,
however, considered sexual promiscuity and not taking care of yourself as
important risk factors as well. Consequently, one entire focus group ranked their
susceptibly as lower following their discussion about sexual promiscuity as a risk
factor. This shift suggests that womens perceptions of susceptibility are heavily
influenced by the most current information available to them. The influence of the
peer discussion most likely explains the large shift toward lower susceptibility in
the overall focus group data. Since only the focus group data showed any
associations with age, ethnicity, and type of health insurance, and those
associations were weak, it seems reasonable, in light of the strong peer group
influence on the data, to consider those associations highly questionable.
Efficacy and Safety of Mammography
Knowing that older women are highly fearful of cancer, it is understandable that
news stories questioning the safety and efficacy of mammography would have a
negative impact on the participation of women in screening mammography.
Consequently, fears of radiation exposure from mammography and concerns about
inaccurate results interfere with some women getting screening mammograms.
Although these barriers are usually considered minor because they concern a
small segment of the population and might not by themselves prevent a woman
from obtaining a mammogram, when they are combined with other concerns and
barriers in the decision-making process, these minor barriers can have an additive
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effect. If, as the transtheoretical theory suggests, a positive decisional balance is
required for action and maintenance of a health behavior such as getting recurrent
mammograms, such minor barriers could tip the decisional scale into the negative,
prohibiting action, and moving a person into a contemplative stage until new
information allays the concern.
If the constructs of the HBM and theory of reasoned action are incorporated
into the decisional balance construct of the transtheoretical model, it becomes
conceivable that the decisional pivot point will be near the central, neutral point for
many women. For example, a womans fear of finding cancer may be balanced by
her belief in the value of early detection. From this neutral position, concern about
either the efficacy or safety of mammography would be enough to create a
negative decisional balance to prevent or at least delay movement into the action
phase of the transtheoretical model.
Efficacy of Pap Smears
The results of this study indicate that most women consider Pap smears to be
highly effective in detecting cervical cancer. However, recent media attention to
the variable quality of interpretations had made several women wary of the
accuracy of Pap smear results. This is an example of the impact that the media can
have on influencing womens knowledge and understanding of medical
procedures.
Attitudes and Beliefs
Fear of Finding Cancer
Until recently, there was little hope of a cure once cancer was diagnosed.
Consequently, older women, having grown up with the concept that all cancer was
75


terminal and having witnessed friends and family die of cancer, are highly fearful of
cancer in general. This pervasive fear is exposed whenever a woman subjects
herself to either a screening mammogram or Pap smear. It is not surprising that the
fear of finding cancer is a strong deterrent to breast and cervical cancer screening
and adds a significant negative weight to the decisional balance.
At the same time, the health belief model suggests that fear may motivate
women to seek cancer screening. This is supported by focus group responses that
peace of mind was one reason some women get mammograms and Pap smears.
That is, the desire for reassurance that you do not have cancer outweighs the fear
of detecting cancer. The manner in which fear and the desire for peace of mind
interact is unclear at this point, but may be related to a womans perceived
susceptibility according to the HBM. Since this study suggests that womens
perceived susceptibility may be unrealistically low, a campaign aimed at making
women more aware of aging as a risk factor could in turn raise the perception of
susceptibility and have the adverse effect of making older women too fearful of
finding cancer to participate in screening. Certainly, enhancing womens belief in
the benefit of early detection and treatment would be one approach to mitigating
the fear of cancer. However, additional research to clarify the role of fear in
influencing older womens participation in screening is essential.
Personal Factors
Embarrassment
Enough women in the study deemed mammograms and Pap smears
embarrassing to consider it a minor barrier to breast and cervical cancer screening.
Although women did not report that embarrassment prevented them from getting
76


screened, it is another negative weight in the decisional balance equation. As with
other minor barriers, its impact depends on the net sum of influential forces. The
results of this study support previously reported results that embarrassment is a
greater barrier to Pap smears for Hispanic women, a population that has a higher
incidence of cervical cancer. In addition, this study indicates that older African-
American women also experience a high level of embarrassment from Pap smears.
Decreasing embarrassment during mammograms and particularly during Pap
smears may be modified relatively easily by increasing the sensitivity of health care
workers to feelings of embarrassment. Nevertheless, addition research needs to
determine the reasons why primarily minority women report embarrassment during
these screening procedures.
Pain and Discomfort during Mammography
Previous studies have reported that many women experience pain or discomfort
during mammography, but that this does not deter many women from getting
screened. The fervor with which pain and discomfort were discussed in the focus
groups emphasizes the need to add pain as another commonly experienced minor
barrier to the negative side of the decisional balance equation. At least two
questions concerning pain and discomfort during mammography need to be
answered in additional studies. First, although pain does not significantly prevent
participation in screening mammograms, does it encourage procrastination and
delay between recommended intervals for screening? And second, are there ways
to decrease the amount of pain and discomfort experienced by older women?
Pain and Discomfort during Pap Smears
Although pain and discomfort during Pap smears appear to be less common
among older women than pain during mammography, it is a major deterrent for
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those women who do experience pain during the procedure. Since pain and
embarrassment were both reported more frequently in older minority women, it
seems reasonable to assume that they are linked. Embarrassment may create
muscle tension which can increase the discomfort of Pap smears. Although this is
not a barrier for a large number of women, it is an unnecessary barrier that can be
readily modified by training practitioners in specific methods for performing Pap
smears on older women who may be more sensitive to the procedure.
Procrastination
Procrastination may be the most overlooked barrier to annual screening
mammograms and annual Pap smears. Procrastination has been mentioned as a
minor barrier in previous studies, but considered a personal factor that cannot
easily be modified. The results of this study, when considered within the
transtheoretical paradigm, indicate that procrastination may be a relevant barrier.
First, it is clear from womens comments that procrastination often results from
the perception that a woman is low risk, and accordingly does not need
screening as frequently as women of average risk for whom the annual guidelines
were presumably designed. The results from both the survey and focus groups
show that 40-45% of older women consider themselves at low risk for breast
cancer, and over 45% consider themselves at low risk for cervical cancer. This
means that almost half of older women are potential candidates for procrastination.
Procrastination related to perceived low susceptibility to breast and cervical cancer
could explain why significantly more women have biennial rather than annual
mammograms and Pap smears. It would be valuable in further research to
document the number of months rather than years since the last screening exam to
better evaluate the role of procrastination in determining the interval between
screening examinations.
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Competing Health Problems
The literature suggests that competing health problems interfere with breast and
cervical cancer screening. While three women did report such interference, two of
those women had suffered strokes and were hospitalized for an extended period of
time. In general most women did not find that chronic conditions such as diabetes,
heart disease, or obesity interfered with their receiving either screening
mammograms or Pap smears. However, only women who considered themselves
to be in good or excellent health were included in this study, meaning that women
with more serious illnesses might have a different experience. Consequently,
studies designed specifically to a address the influence of competing health
problems on participation in breast and cervical cancer screening are necessary to
increase our understanding of this complex issue.
Factors Inherent in the Medical System
Phvsician-Related Factors
Physicians continue to play an important role in motivating women ages 65 and
older to get regular mammograms and Pap smears. This is important to know as
the medical system adapts to become more cost-efficient. The trend perceived by
many older women is for physicians to spend less time with individual patients and
to coerce compliance with screening mammography and particularly Pap smears by
requiring these procedures as a prerequisite for receiving supplemental estrogen.
Since Pap smears are already seen as a routine requirement, withholding
medication refills to coerce compliance with Pap smears may seem natural to
older women. This may not be the case with annual mammograms since they have
79


not yet become routine. Although coercion may result in short term compliance, it
will not strengthen understanding of the reasons why screening is desirable, which
is necessary for the long-term acceptance of screening procedures.
Physician attitudes and sensitivity to womens discomfort during Pap smears
also influences womens willingness to participate in recurrent Pap smears. To a
lesser degree, the gender of the physician can be a positive or negative influence,
with many women assuming that a female physician is more sensitive to a womans
experience during a Pap smear.
It is increasingly essential to document the cost and benefits associated with
physicians spending more time with older women to encourage annual screening
mammograms and regular Pap smears, preferably by informing them of the benefits
of early detection of both breast and cervical cancer. It does appear that women
would be comfortable getting some of their information about breast and cervical
screening from printed materials and nurses, which may enhance the cost
effectiveness of such preventive services.
The Habit of Pap Smears
Physician recommendation plays a lesser role in promoting regular Pap smears
in older women because having Pap smears has become a routine or habit for these
women. Having routine Pap smears has been ingrained in this population since
their childbearing days, and most comply with the screening exam despite barriers
and a lack of knowledge about cervical cancer. It is the unquestioned habit of
having a Pap smear as part of an annual physical exam that motivates compliance
in most older women, particularly those 65 and older.
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The Effects of Health Insurance
The cost of screening mammograms and Pap tests and the presence or absence
of adequate health insurance appear to influence the screening behaviors of many
women aged 50 to 74. Both Anglo and African-American women voiced concern
with both the cost and insurance coverage of screening exams, while Hispanic
women did not express similar concerns. This difference was most pronounced in
the younger groups, but was observed to some degree in all groups, suggesting
that there are ethnic and cultural influences involved. Based on previously reported
studies, it is possible to speculate that this disparity resulted from the Hispanic
women not considering it proper to publicly discuss financial concerns.
This study suggests that women in both the older and younger focus groups
who had private insurance also had higher rates of compliance with getting a
screening mammogram and Pap test every one or two years. In addition, women
65 and older who rely on Medicare to cover all of their health care expenses, had
lower rates of annual and biennial mammograms and Pap tests than women with
private supplemental health insurance. This pattern applied to all but the two
younger (50 to 64 year-old) African-American focus groups and the two older (65
to 74 year-old) focus group for annual mammograms (see Tables 5.6 and 5.7).
Small sample sizes and confounding recruitment procedures prevent meaningful
statistical analysis of this data, however. Additional studies need to fully address
the magnitude of cost and insurance as barriers to regular screening exams in a
more confidential atmosphere.
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Theoretical Considerations
The results of this study support integrating the three theoretical models
described in Chapter 3 to explain and predict the participation of older women in
screening mammograms and Pap smears, since each of the models, by itself, is
inadequate to explain the complexity of screening behaviors in older women. The
transtheoretical model provides an appropriate overarching model that can
incorporate the more specific constructs of the health belief model and of the
theory of reasoned action into its decisional balance construct.
It seems easiest to understand the theoretical considerations by examining how
the constructs of the three models work together using the results of this study.
The basis of this examination involves the decisional balance construct of the
transtheoretical model. It is the net force that results from all contributing factors
that drives an individual to move between the precontemplative, contemplative,
action and maintenance phases. Consequently, to explain and predict breast and
cancer screening behaviors in older women, it is necessary to identify as many of
the factors as possible that contribute to the decisional balance that drives the
system.
From the perspective of the HBM, fear of breast and cervical cancer as serious
threats, a belief in the benefit of early detection, and a higher than average
perceived susceptibility to breast and cervical cancer should provide positive forces
to encourage screening actions. These positive forces balance barriers to screening
such as conflicting information, inadequate insurance, pain, lack of knowledge of
aging as a risk factor. However, as discussed previously, fear of breast and cervical
cancer appears to be both a positive and negative force in the decisional balance,
and perceived susceptibility may be quite variable and inaccurate. The HBM also
suggests that cues to action, such as recommendations by the doctor in women 65
82


and older, may add a positive force. Although the HBM enhances understanding of
many factors weighed in the decisional balance, its scope is limited in predicting
the actual screening behavior decided upon by an individual.
The theory of reasoned action acknowledges the importance of considering
subjective norms in the decisional balance. The unquestioned participation of
women in annual Pap smears illustrates how a norm, in this case the norm that Pap
smears are a routine part of the annual physical, outweighs discomfort,
embarrassment, and cost barriers in the decisional balance. In the case of Pap
smears, the subjective norm of routineness is additive to the positive force of
believing in the benefit of early detection, and helps to stabilize women in the
action (getting a Pap smear) and maintenance (getting a Pap smear every year)
phases of the model.
By combining the three models, it is possible to construct a decisional balance
sheet for a given population to predict whether the factors present will result in a
net positive force and move women toward increased participation (action and
maintenance) in screening mammography and Pap smears, or whether barriers will
produce a net negative force that will delay or impede participation. Although this
study was not designed to test theoretical constructs, examining the results of the
study within a theoretical paradigm adds an additional dimension of understanding
and organization and can be valuable in developing interventions to address the
factors based on this study.
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Data Limitations
The qualitative nature of this study, and the recruitment criteria for participant
inclusion limit the ability to generalize the results to the entire population of
women aged 50 to 74. The results of this study are intended to increase the
understanding of factors that influence womens participation in screening
mammograms and Pap smears and to guide future research and development of
interventions^
Conclusions
Kev Findings
The results of this study demonstrate the progress that has been made over the
past decade toward mammography becoming a well-accepted, valued, routine part
of the preventive health care of older women 50 to 74 years old. In comparison to
the Breast Cancer Screening Consortium Report based on data collected in 1987
(Breast Screening Consortium, 1990), in which many women of all ages had not
heard of a mammogram, had not thought about getting one, or had not had one
recommended, the women participating in the focus groups in 1995, all knew that
older women need to have screening mammograms and the majority had had one
recommended by their doctors. This progress is further illustrated by the struggle
to find women who had not had a mammogram to participate in this study.
In addition to demonstrating a general trend toward greater participation of
older women in screening mammography, this study identifies significant factors
that influence older womens participation in the two screening procedures. The
primary factor that encourages participation in both breast and cervical cancer
84


screening procedures is the belief in the benefit of early detection of the cancers. In
addition, for those women 65 and older, the doctors recommendation and
encouragement of screening mammography and Pap smears is facilitative.
Participation in screening for cervical cancer is specifically facilitated by the social
norm of Pap smears being a routine preventive health behavior for women
beginning in early adulthood.
On the other hand, the primary barriers to the consistent use of screening
mammograms by older women include the fear of finding cancer, not knowing that
age is a risk factor, conflicting information about screening guidelines, a lack of
insurance coverage for annual mammograms, the perception of low susceptibility
to breast cancer, and pain and discomfort associated with the procedure. In
comparison, barriers to Pap smears include embarrassment, the gender and attitude
of the doctor, the perception of low susceptibility to cervical cancer, conflicting
information about screening guidelines, and procrastination.
Implications for Interventions
These findings are valuable in developing interventions to facilitate acceptance
of and participation in screening mammograms and Pap smears. The focus groups
demonstrated that women aged 65 and older do respond favorably to a peer group
educational format for discussing breast and cervical cancer, mammograms, and
Pap smears. Although women who were not comfortable with this format probably
refused to participate in the study, the enthusiastic response of participants of all
ages plus the emphasis the women placed on learning from peers and friends
suggest that interventions involving small groups of older women could be
successful. Peer education groups might provide the needed social support to help
older women overcome the fear of cancer in addition to addressing the
informational needs of this population.
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Other interventions should be directed toward clarifying guidelines in the media
and in the minds of physicians. Physicians and health care agencies need to be
reminded of their important role in facilitating screening among those women 65
and older. And methods for paying for annual mammograms and Pap smears for
older women must be developed to insure that all women have an equal
opportunity for the early detection and treatment of breast and cervical cancer.
Implications for Future Research
Although this study has enhanced the understanding of breast and cervical
screening behaviors in older women, many questions remain to be answered. One
critical question is how many women fail to receive an annual mammogram or Pap
smear because of inadequate insurance coverage? And why do primarily minority
women complain about pain and discomfort during Pap smears and mammograms?
In addition, what are the variables that lead to a perception of pain and discomfort
during these screening procedures?
Understanding the factors that facilitate and obstruct older womens
participation in screening mammograms and Pap smears will enable more older
women to benefit from the early detection and treatment of breast and cervical
cancer. This will not only decrease mortality among older women from these
diseases, but will also enhance their quality of life, increase their ability to
contribute to society, and possibly decrease the net cost of health care
expenditures.
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Footnotes
1 The American Cancer Society and National Cancer Institute recommend that
asymptomatic women 50 years of age and older have a screening mammogram
annually and a Pap smear annually. The frequency of the Pap smear may decline to
every 1-3 years if three consecutive normal Pap smears have been taken.
Guidelines for continuing Pap smears following hysterectomy are conflicting.
2 Risk factors for breast cancer include: family or personal history of breast
cancer, early age of menarche, late age of menopause, having no children or having
a first live birth after age 30, not breastfeeding, lengthy exposure to cyclical
estrogens, higher educational status, and higher socioeconomic status. Factors
demonstrated to be associated with breast cancer but not causal include: diet high
in fats, diet low in antioxidants, and exposure to environmental toxins.
Risk factors for cervical cancer include: early age of first intercourse, multiple
sex partners, cigarette smoking, and infection with certain types of human
papillomavirus.
4Gilda Radnor was a well known actress who wrote and publicly talked about
her struggle with ovarian cancer prior to her death. Ovarian cancer, unlike cervical
cancer, ovarian cancer is more difficult to diagnose and is less likely to be cured.
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Appendix A
Focus Group Participant Recruitment Screening Questionnaire
Hello, my name is___________, and I'm calling from Information Research, a local
research firm. We are conducting a research study on women's health issues. I
would like to talk with a female member of your household who is at least 50 years
old.
(When you have a female who is 50 or older on the telephone) Hello, my name
is___________, and I'm calling from Information Research, a local research firm.
We are conducting a study on women's health issues. Would you be willing to
answer a few questions? (takes about 5 minutes)
If YES: Go to Question 1
If NO: "Thank you very much for your time. Good-bye."
If any questions disqualify a person:
"Thank you very much, but at this time we are only including women who...(are
between 50 and 74, have never had cancer, rate their health as good to excellent,
etc.) In the future, we may do other studies that involve women ...(your age, who
have had cancer, who have some health problems). Thank you for your time and
interest in our study."
1. Do you or does anyone in your household work for a:
Market research firm TERMINATE
Advertising agency TERMINATE
Health-related industry TERMINATE
2. Have you participated in a focus group to discuss cancer in the past 6 months?
no CONTINUE
yes TERMINATE
vour age? (record)
under 50 TERMINATE
50-54 CHECK QUOTA AND CONTINUE
55-59 CHECK QUOTA AND CONTINUE
60-64 CHECK QUOTA AND CONTINUE
65-69 CHECK QUOTA AND CONTINUE
70-74 CHECK QUOTA AND CONTINUE
over 75 TERMINATE
Refused TERMINATE
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4. Would you say that your physical health is:
excellent CHECK QUOTA AND CONTINUE
good CHECK QUOTA AND CONTINUE
fair TERMINATE
poor TERMINATE
don't know TERMINATE
5. Has a doctor or other health care provider ever told you that you had a cancer
other than a skin cancer? no CONTINUE
yes TERMINATE
6. In the past 12 months, have you had a screening mammogram?
yes no CHECK QUOTAS BEFORE PROCEEDING
Interviewer: if asked, a mammogram is an x-ray of the breast
7. Within the past 6 months, have you had any breast problems, such as a lump,
pain, or discharge that caused you to see a doctor?
no CONTINUE
yes TERMINATE
"In our study, we are trying to find out what women from diverse ethnic groups
and with various types of health insurance think about cancer and cancer
screening. I'd like to ask you a few questions about your ethnic background and
health insurance."
8. Are you of Hispanic origin such as Mexican American, Latin American, Puerto
Rican, Spanish, or Cuban ?
Yes CHECK QUOTA ; GO TO 8a and 8b and SKIP 9
No GO TO 9
8a. What is your preferred language?
English
Spanish
no preference
8b. What race do you consider yourself to be?
White/Anglo/Caucasian
African American/Black
Other (specify)
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9. What is your race or ethnic background?
category)
White/Anglo/Caucasian
African American/Black
Asian/Pacific Islander
American Indian/Eskimo
Other (specify)________________
Refused
________(record answer and check
UCHECK QUOTA AND CONTINUE
DCHECK QUOTA AND CONTINUE
U TERMINATE
D TERMINATE
TERMINATE
U TERMINATE
If terminated: "Thank you, but at this time we are only able to include women who
are White, African-American, or Latino. In the future, we may do other studies
that involve Asian/ American, Indian, Eskimo, Other women. (OR we have
recruited enough____________women for this study, but may I call you for future
studies?) Thank you for your time and interest in our study."
10. Do you currently have any form of health care insurance that pays for medical
expenses?
Yes CONTINUE TO 10a
No CHECK QUOTA (Public Insurance Group) AND CON"T
What type of health care insurance do you have?
10a.
Medicaid only
Medicaid and Medicare
Medicare A only
Medicare A & B only
Medicare & Supplemental
Private Policy or HMO
Military Benefits(Champus)
Other
UCHECK "PUBLIC" QUOTA
UCHECK "PUBLIC" QUOTA
UCHECK "PUBLIC" QUOTA
UCHECK "PUBLIC" QUOTA
UCHECK "PRIVATE" QUOTA
UCHECK "PRIVATE" QUOTA
UCHECK "PRIVATE" QUOTA
UCHECK QUOTA(prob private)
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Full Text
Figure 4.2: Model of Adolescent Sexual Behavior
MODEL OF ADOLESCENT SEXUAL BEHAVIOR
Cognitive Risk Assessment
and Behavior Planning Phase Action Phase
Religious Beliefs Family Values Self-Efficacy
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