THE INTENTION TO HELPSEEK FOR BREAST CANCER SYMPTOMS

IN AFRICAN AMERICAN WOMEN

by

Noreen C. Facione

DISSERTATION

Submitted in partial satisfaction of the requirements for the degree of

DOCTOR OF PHILOSOPHY

in

Nursing

in the

GRADUATE DIVISION

of the

UNIVERSITY OF CALIFORNIA

San Francisco

Approved:

Committee in Charge

Deposited in the Library, University of California, San Francisco

THE INTENTION TO HELPSEEK FOR BREAST CANCER SYMPTOMS

|N AFRICAN AMERICAN WOMEN

© Copyright 1994Noreen C. Facione

All Rights Reserved

Acknowledgements

Any completed project is many people's work, and this project owes

special thanks to many people who gave support and advice. I am grateful for

the patient listening of Dr. Linda McKeever (formerly of California State U.

Fullerton) and Dr. Patricia Larson (U. California San Francisco - UCSF) who

nurtured the early framing of the research questions that were addressed in this

study. No less important were my dialogues with Drs. Gay Becker (UCSF),

Richard Snow (Stanford U.), Sarah Kagan (U. Pennsylvania), and Karen

Schumacher (UCSF) which shaped the focus of the investigation and provided

a vision of the character of the data that might be collected. Thank you, Drs.

Virginia Olesen and Afaf Meleis for providing guidance toward a feminist

perspective of women's social world at a formative stage of the project's

conceptualization. I am grateful to Dr. Jeanne McRae (Howard U.) who gave

vision to a community based study, to Dr. Heather Young (U. Washington) who

fed the vision by sharing her experience of successful community projects

guided by social behavioral theory, and to Dr. Robert Staples for providing the

opportunity to discuss race as a factor in health care access. I am indebted to

Dr. Rob Slaughter (UCSF) for his guidance in the finer points of attitudinal

measurement, and to the collaborative comments of the participating faculty of

the 1992 Oncological Nursing Research Short Course which contributed to the

strength of the study design. Thank you, Dr. Susan Gortner (UCSF), for bringing

the Philosophy of Nursing Science to life and you, Dr. Marie Cowan

iii

(U. Washington), for providing encouragement and guidance in the practical

world of research funding.

In the course of this dissertation study I was the beneficiary of guidance

from three nursing scientists whose knowledge and expertise are particularly

extraordinary: Dr. Marylin J Dodd, Dr. Afaf I Meleis, and Dr. William Holzemer.

That such a rich mentorship committee was possible is a tribute to the UCSF

School of Nursing. A delicate balance between reassurance, critique and

expectation was ever-present in their combined mentorship of my progress as

a Scientist.

Thank you, Dr. Marylin J. Dodd, for providing primary direction of this

dissertation study, and for focusing the oncological issues in the prior research

on early case-finding in breast cancer. Your unwavering engagement and belief

in the possibility of success for this ambitious endeavor sustained me when

events or demands added to the challenge of the project. Your mentoring

helped me to frame my understandings of how studies of helpseeking behavior

fit with other investigations of the breast cancer experience. I look forward to

sharing the labors of oncology nursing science with you in the future.

Thank you, Dr. William Holzemer, for always providing a much-needed

practical analysis of work accomplished, and of possible approaches to work still

needed. Your Socratic approach to conceptualization led to clear improvements

in my variable selection for this project as well as a sharpening of the variable

definitions. The initial validity and reliability evidence for measures developed

iv

as a part of this project is much indebted to your guidance. Thank you for

encouraging me to enjoy the numbers in my head.

Thank you, Dr. Afaf Meleis, for your vision of the project as necessarily

accountable to culture and gender issues. Your mentorship in this regard added

richness and increased the authenticity of the project. Our many discussions

made possible the theoretical linkage between my research objective, my

chosen methodology, and the interpretation of the data, strengthening the

potential value of the study findings. Your spirit of asking what more could be

done, trusting that practical difficulties would be worked out later, led to an

extension of the boundaries of the project. Thank you, also, for the dialogue on

the relationship between critical thinking and nursing knowledge development.

I hope its one we can continue.

A community based project is, in a very large part, the offspring of the

community. This project would not have been so successful without the efforts

of Barbara Galloway-Lee, MEd., of the San Mateo Unit of the American Cancer

Society. Thank you Barbara, for launching the focus group portion of the study

by facilitating introductions to a number of women who were community leaders

involved in health access and education projects. I thank you, along with

African American nurse researchers Dr. DeLois Weekes (UCSF), Dr. Nanny L.

Green (UCSF), Linda Woody-Wood, Dr. Gozil Shockness, and Dr. Benita Walton

Moss, for offering helpful comments on phases of the project design and the

developed survey instrument.

All of the women of the focus groups deserve special acknowledgement

for their influence on this project. They gave generously of themselves, sharing

thoughts and feelings of their own breast symptom discovery experiences as

well as narratives of their friends', relatives' and neighbors' experiences with

breast cancer. Their patient and candid efforts to analyze and critique

prospective survey items, being called upon to explain their responses to

problematic items, testifies to their commitment to the project's cultural

authenticity of measurement. I am most grateful to one of you, Ms. Mary

Flamer, who took on the job of primary research assistant and ultimately was

responsible for distributing and collecting the vast majority of the survey

questionnaires. Mary, you adopted a commitment to the project that extended

far beyond that of many project assistants, facilitating the community's

awareness of the project, and making possible the accrual of a sample that

included employed as well as unemployed women, partnered and single

women, and women who ranged across income levels. This project's service

to the community was greatly increased by your ability to offer debriefing

information and provide clarifying information when questions remained after

women completed the survey instrument. The increased community awareness

of the American Cancer Society's cancer information and patient support

services is a tribute to your efforts.

Apart from the human resources supporting the project, financial support

for the project was instrumental in supporting my full time investigative efforts as

well as providing a small remuneration to project participants, supporting the

salary of my primary research assistant, and covering the many material costs

of this survey investigation. Predoctoral fellowships from the University of

California Regents (20095-3; 34187-3) and the University of California Chancellor

(36009-3), a predoctoral scholarship in cancer nursing from the National

American Cancer Society (MPCN-24-2), a National Research Service Award

(NRSA) from the National Institute for Nursing Research, National Institutes of

Health (1 F31 NR06851-01), and a Predoctoral Fellowship in the Social

Behavioral Sciences from the California Division of the American Cancer Society

(PD-5-94). Early work also received support from a Professional Nurse

Traineeship (2A11 NU00289-16).

I would also like to acknowledge Dr. Nan Green for permitting the use of

her Perceptions of Racism scale, Dr. Kenneth Wallston and colleagues for the

use of the Chance scale from the MHLC instrument, and Dr. Krantz for the use

of the Health Opinion survey, as well as the other scientists mentioned within the

text whose work provided a base for this investigation.

Completing this project depended in no small part on the emotional

support I received from friends and colleagues at UCSF and at Santa Clara

University. Most instrumental was the support of my spouse and research

colleague Dr. Peter A. Facione. Thank you, Peter, for your tireless listening to

the day to day happenings and your willingness to provide a forum for the

continual problem solving process always necessary to a project of this size.

You provided the glue that held the work together. Thank you for believing that

this project was possible and that I was capable of leading it to completion.

vii

Since you know me best, that assessment was powerful. Just as I thank my

parents for nurturing my early intellectual development, I thank my children for

supporting my later studies. Thank you, Chris and Jerome, for always asking

how things were going, and for your patience with my stresses or my absence

from your day to day. And thank you, Carol, for sharing the growing process.

It was wonderful to know that you were always there to counsel about the

setbacks as well as the successes. Our conversations particularly helped me

to evolve a multi-disciplinary framing of the study and its findings. Thanks to all

of you for celebrating the product of all this effort.

To all of you, and there are many others who contributed whose names

I have not been able to mention individually here, I give grateful

acknowledgement. It is my hope that your contributions to this study have only

begun to bear fruit.

viii

ABSTRACT

THE INTENTION TO HELPSEEK FOR BREAST CANCER SYMPTOMS

|N|AFRICAN AMERICAN WOMEN

Noreen C. Facione

The self-discovery of a breast cancer symptom occurs within the

context of beliefs and feelings, gender roles, and social and economic

realities which may differ within culture. African American women were

chosen for study because of their later staged breast cancer at diagnosis.

The purpose of this survey research was to identify factors that influence the

timing of helpseeking for breast cancer symptoms.

Focus groups were conducted to explore possible influential factors. A

survey was then constructed from focus group data and critiqued by the

focus group women and by African American nurse researchers. The survey

was then used in a new sample (N = 352) of African American women.

Perceptions of the consequences of delaying helpseeking, health care

utilization habits, and access to services were positively and significantly

related to the intention to helpseek for a discovered breast symptom.

Religiousness, fatalistic beliefs, perceptions of social role constraints, and the

presence of a current worrisome breast symptom were significantly and

negatively related to helpseeking intention. A hierarchical multiple linear

regression model containing these variables explained 45.3% of the variance

in helpseeking intention. While younger aged, lower income, and unmarried

women were significantly less likely to intend helpseeking for a discovered

breast symptom, these demographic variables added no explained variance

to the Social behavioral model.

Variables observed to be significant to the intention to helpseek in this

sample of African American women bear striking resemblance to anecdotal

reports in the literature of the reasons women of all ethnic and racial groups

give for late helpseeking when presenting with late-staged breast cancer.

This investigation suggests the possibility of screening women for

psychosocial risk of advanced breast cancer presentation before their breast

cancer symptoms occur. Such screening could identify women who might

particularly benefit from additional guidance in monitoring their own breast

health, as well as inform providers with regard to those who might require

closer follow-up.

Mary■ in J/Dodd, KKD, RN, FAAN: Adviser

TNoreen C. Facione, MSN, RN, FNP - Candidate

TABLE OF CONTENTS

INTRODUCTION: 1

CHAPTER 1: WOMEN AT RISK FOR ADVANCED STAGE OF BREASTCANCER AT DIAGNOSIS 4

The Phenomenon of Delayed Helpseeking 5The Definition of Patient Delay 5The Prevalence of Patient Delay 7

Helpseeking's Influence on Survival 9Demographic Variables Believed Influential

to the Timing of Helpseeking 11Race and Racism - The Greater Threat

for African American Women 11

The Incidence of Breast Cancer 11

Survival of Breast Cancer 12

Socioeconomic Status - Poorer Women Againat Increased Risk 15

The Interaction Between Race and Poverty 17Older Age and Helpseeking 18Comorbidity Issues 21

CHAPTER 2: A SOCIAL BEHAVIORAL DESCRIPTION OF WOMENAT RISK FOR DELAYED HELPSEEKING 23

Cognitive and Behavioral Variables Associated with Patient Delay 23Symptom Attribution - Cues to Action 24

Presenting Symptoms of Breast Cancer 25Perceptions of the Consequences of Delayed Helpseeking 27Affective Responses to Symptom Discovery 30Perceived Behavioral Control 34

Habits of Helpseeking 36Social Normative Influences 39

Facilitating Conditions for Helpseeking 41

CHAPTER 3: THE TRIANDIS MODEL OF SOCIAL BEHAVIORAS A GUIDE TO THE STUDY OF HELPSEEKING INTENTION 44

Culturally Competent Theory 44Social Behavioral Models to Study Helpseeking Intention 45

The Triandis Model of Social Behavior 47Some Potential Limitations of the Triandis Model 53

xi

CHAPTER 4: METHODOLOGY: A THREE STEPPED PROCESS

Focus Group MethodsNew Study Variables from Focus Group SessionsPlanned Comparative Model Testing

Instrument Design Methodology - A CollaborationSurvey Methodology

Sample Inclusion and Exclusion CriteriaSurvey Sample Description

CHAPTER 5: RESULTS: FOCUS GROUP SESSIONSAND SURVEY INSTRUMENT DEVELOPMENT

Focus Group Data Phrases - Consensus and ConflictTriandis Variable Themes

Behavioral Intention

Habits of HelpseekingAffect Related to Breast Symptoms and CancerSocial Normative Influences

Perceived Consequences of Prompt VersusDelayed Helpseeking

Facilitating or Constraining InfluencesAdditional Focus Group Themes

Knowledge of Breast CancerFatalism in Relation to Breast Cancer

ReligiousnessPerceptions of Racism in the Health Care

Services Environment

Psychometric Performance of the Survey InstrumentPerformance of Developed Scales and Measures

Missing DataThe IHELP MeasureThe FEAR Measure

The CONSEQ MeasureThe HABIT MeasureThe Social Influence Measures

SOCNORMCONSTRAINT

The ACCESS MeasureThe FATE Measure

Knowledge of Symptom Presentations: TYPELimitations of the TYPE Measure

Performance of Adopted or Modified ScalesThe Religiousness Measure: RELIGThe RACISM MeasureThe AFFECT Measure

The Health Opinion Survey (HOS)The Crowne - Marlowe (CM-SD)

585862

66

6768

68

74

74

74

74

75

7677

7878

7979

8080

818282

85

8789

9090

9092

9395

96

97

98

99100101

102103

xii

CHAPTER 6: RESULTS: SURVEY OF HELPSEEKING INTENTION

Helpseeking Intention (IHELP)The Relationship of IHELP to Current SymptomatologyRelationships Between Helpseeking Intention and

Sample DemographicsAge and Helpseeking IntentionIncome and Helpseeking IntentionPartnership Status and Helpseeking IntentionResponsibility for Childcare and

Helpseeking IntentionEmployment Status and Helpseeking Intention

Social Behavioral Measures of Helpseeking IntentionKnowledge of Breast Cancer Symptom PresentationReligiousness and Helpseeking IntentionAccess to Services and Helpseeking Intention

Sub-scales of the ACCESS measure

Perceptions of Racism and Helpseeking IntentionThe Habit of Helpseeking and Helpseeking IntentionAffect and Helpseeking IntentionFear and Helpseeking IntentionFatalistic Beliefs and Helpseeking IntentionPerceptions of Consequences and

Helpseeking IntentionSocial Norms and Role Constraints on

Helpseeking IntentionModel Testing for a Combined Model of

Helpseeking IntentionVariable ModelingComparative Model TestingModel 1 - The Original Triandis Predictors

of Behavioral Intention

Model 2 - Testing the Expanded Triandis ModelModel 3 - Adding Influences Proposed

by the Focus Group WomenResidual Diagnostics for Model 3The Contribution of Demographic Variables

104104

105

107107108

108

109109

110110110111112

113114115118

119

120

121

CHAPTER 7: DISCUSSION OF RESULTS

Overview of FindingsThe Overall Intention to Helpseek

Discussion of Demographic Relationships withHelpseeking Intention

The Power of Role Related ConstraintsThe Power of BeliefsThe Power of Resources

The Power of Knowledge

126

126

127

127

129

130

132132

136136137

140143

147

150152

xiii

CHAPTER 7: DISCUSSION OF RESULTS (Continued)The Power of Affect 154

The Benefits of Triandis' Model and Philosophy of Method 155Study Limitations 158

CHAPTER 8: IMPLICATIONS FOR FUTURE RESEARCH 162

REFERENCES 167

APPENDIX A. APPENDIX TABLES 187

APPENDIX B; FOCUS GROUP MATERIALS: Consent Forms, RecruitmentMaterials, Focus Group Session Materials 193

APPENDIX C: THE SURVEY QUESTIONNAIRE 204

xiv

LIST OF TABLES: Page

Table 2 - 1: A Fear Cascade - Targets of Fear in Relation to a BreastCancer Symptom 31

Table 3 - 1: Conceptual Definitions of the Triandis' (1980) SocialBehavioral Model 49

Table 4 - 1: Scales Developed to Measure Triandis Model Variables 62

Table 4 - 2: Other Health Problems Reported by Sample Women 72

Table 5 - 1: Characteristics of Developed Scales Calculated fromSurvey Sample (N = 352) 83

Table 5 - 2: Adopted or Modified Scales Psychometric Characteristics 99

Table 6 - 1: Regression Analysis of ACCESS Sub-Scales onHelpseeking Intention 113

Table 6 - 2: Anticipated Affect in Relation to the Discovery ofa Breast Symptom 116

Table 6 - 3: Two Step Regression of Helpseeking Intention: Role StatusVariables and Perceived Role Constraints (CONSTRAINT) 124

Table 6 - 4: Study Variables Associated with the Intention toHelpseek (IHELP) 125

Table 6 - 5: Multiple Regression Analysis of Model 1 Variables 128

Table 6 - 6: Multiple Regression Analysis of Model 2 Variables 130

Table 6 - 7: Multiple Regression Analysis of Model 3 Variables 131

Table A - 1: Meta-analysis of Studies of Delayed Helpseekingfor Self-Discovered Breast Cancer Symptoms 187

Table A - 2: Demographic Descriptors of the Survey Sample (N = 352) 188

Table A - 3: The IHELP Measure-

189

Table A - 4: The IHELP Measure: Factor Analysis of Items Measuringthe Intention to Helpseek in the Event of a BreastSymptom Discovery: Oblique Rotation 190

LIST OF TABLES: Continued

PageTable A - 5: Factor Analysis of the ACCESS Scale 191

Table A - 6: Reported Behavior in Relation to a CurrentWorrisome Breast Symptom 192

LIST OF FIGURES

Figure 3 - 1:

Figure 3 - 2:

Figure 4 - 1:

Figure 6 - 1:

Figure 6 - 2:

Triandis Variables Measuring Behavioral Intention (Model 1) 53

Theoretical Expansion of Triandis Variables PredictingBehavioral Intention (Model 2) 55

Proposed Influences on Helpseeking Intention (Model 3) 65

Frequency of IHELP Scores in Symptomatic andAsymptomatic Women 106

Univariate Correlation in Best Model Explaining 45% ofVariance in Helpseeking Intention in a Sample of (n = 330)of 352 African American Women 135

INTRODUCTION

In this year of 1994, as we struggle to reform health care delivery, and

politicians seek popular issues to persuade voters, there is suddenly an

increased media focus on breast cancer. Those of us whose research

programs study breast cancer related problems hope to capitalize on this

emphasis before the spotlight moves on. There is no way to measure how

the current focus on breast cancer affected this study, perhaps by increasing

the willingness of respondents to join the focus groups or to complete the

surveys, perhaps by energizing my primary research assistant, Mary, to

recruit survey participants from the many community locations.

During the months when this study was carried out, women in the San

Francisco Bay area were generous with their ideas and feelings about a

breast cancer symptom discovery. And it was trust in God and a dedication

to helping everyone that empowered Mary, not transitory, media generated,

excitement about this important health problem for women throughout the

world. This study began as a theory-guided inquiry about health risk

behavior in a population most at risk for breast cancer death, but it became

much more. It became an inquiry molded by the community at risk, the

descriptions of the thoughts and feelings surrounding helpseeking behavior

Cast in the words of the women studied.

This study was conducted in two parts. The first was a series of four

focus group discussions with twenty-two African American women regarding

the event of a breast symptom discovery and possible breast cancer. In the

2

course of the discussions the women explored what they believed they would

think, who they would tell, how they would feel, what they would know about

the meaning of a worrisome breast symptom discovery in the context of their

lives. Lastly, they described what they thought they would do. This data was

used to construct survey items to capture a culturally relevant expression of

the factors related to helpseeking intention for a self-discovered breast

symptom. To assure that the developed survey captured the spirit and the

content of the focus groups, the developing instrument was critiqued by the

focus group women for its clarity, completeness and cultural acceptability.

Social behavioral theory, specifically the Triandis model, guided the

domain of the topics to be covered in the focus group discussion and the

scale development for the resulting questionnaire. In the second part of the

study, the newly developed survey questionnaire was used to survey a new

sample of 352 African American women. Their responses are analyzed to

explore the influences on helpseeking intention for potential breast cancer

symptoms in this at risk population.

Observed significant influences on helpseeking intention mirrored the

retrospective accounts of factors affecting the timing of helpseeking in women

with breast cancer, suggesting that women have dispositions in relation to

helpseeking that can predict their likelihood to present with advanced stage

breast cancer. Many of the variables observed to be related to low

helpseeking intention were beliefs and habits of mind, not immutable

demographics. If this array of psychological risk factors proves a stable

3

picture of the sub-group of women who seek help less promptly than others

for a potential breast cancer symptom, women might be screened to identify

those with habits of mind that put them at risk for advanced breast cancer at

diagnosis and decreased survival from the disease. Such a screening,

coupled with health care reform that makes breast symptom evaluation

possible for all women, can advance the goal of early case-finding for breast

Ca■ hCer.

CHAPTER 1

WOMEN AT RISK FOR ADVANCED STAGE OF BREAST CANCER

AT DIAGNOSIS

Untreated, a malignant breast tumor advances in stage, diminishing a

woman's chances of survival. Determining the factors which contribute to

delays in seeking help for breast cancer has been the continued focus of

cancer researchers throughout the world (Menon, Teh & Chua, 1992;

Ajekigbe, 1991; Nagadowska & Kulakowski, 1991; Neave, Mason & Kay,

1990; Rossi, et al., 1990; Machiavelli, et al., 1989; Keinan, Carmil & Rieck,

1991; Watson, et al., 1984; Mor et al., 1990). The incidence of breast cancer

continues to rise, with the United States expecting 182,000 new cases and

46,000 deaths in 1994 (ACS, 1994). England and Wales currently lead in age

adjusted death rate (28.7 per 100,000), with the United States (22.4 per

100,000) and other European countries ranking not far behind (ACS, 1994).

In light of the clearly established relationship between early case-finding and

survival, understanding the factors that determine the timing of treatment

remains of paramount importance in the effort to decrease breast cancer

mortality. Demographic and social behavioral variables associated with late

staged breast cancer at diagnosis provide the framework for investigations of

women's behavior in response to a self-discovered breast cancer symptom

and the timing of their seeking an initial provider evaluation (helpseeking).

The Phenomenon of Delayed Helpseeking

Delay in seeking a provider evaluation for self-discovered breast

cancer symptoms has been shown to significantly contribute to the stage of

breast cancer at diagnosis (Hunter, et al., 1993). This chapter is divided into

three sections: (a) the description of the phenomenon of delayed

helpseeking, its prevalence, (b) its impact on survival; and (c) demographic

variables targeting populations where delay is most observable. The

following chapter summarizes what is known about the social behavioral and

cultural variables influential to the timing of helpseeking for self-discovered

breast cancer related symptoms. Both chapters represent advances on the

research on delayed helpseeking published previously (Facione 1993a).

At least 35 research studies from 11 nations have been published in

English language journals on the topic of helpseeking or delay in helpseeking

for breast cancer symptoms since 1975. This discussion summarizes their

findings in relation to helpseeking in female cancer of the breast, no studies

having yet been reported on delayed helpseeking in the less than 1% of

breast cancer occurring in males.

The Definition of Patient Delay

In a seminal article in The American Journal of Cancer, Pack and Gallo

(1938) defined "undue patient delay" arbitrarily as "three months or more

elapsed time between discovery of symptoms and a visit to a physician."

They called for this standard measure of what they termed "patient delay" to

facilitate quantification of the phenomenon through comparison between

studies. Unfortunately, measures of diagnostic delay remain largely arbitrary

today. But there has been increasing care to separate research reports of

the phenomenon into: (a) time related to helpseeking for a self-discovered

breast symptom, and (b) time from helpseeking to diagnosis or initiation of

definitive treatment. The first time period is the domain of the patient alone.

The second is the domain of the patient, the provider, and the health care

system. Both of these time segments have important implications for a

woman's survival of breast cancer. The discussion is limited to the first, the

timing of helpseeking for self-discovered breast cancer symptoms. The

second time period, often referred to in the literature as "provider delay" is

discussed more fully elsewhere (Facione, 1993a).

Most research studies report the timing of helpseeking in terms of

categorical blocks by months, while others define a period as "patient delay"

and report the frequency of women who delay helpseeking for their breast

cancer. All studies mark the beginning of the patient delay period from the

self-discovery of symptoms. Those which mark endpoints at the first provider

consultation provide clear measures of helpseeking, while those which mark

the endpoint at biopsy, diagnosis, or first treatment unfortunately confound

the timing of helpseeking with provider and system influences.

Admittedly, the use of retrospective recall data to determine the

commencement of the patient delay period carries its own potential validity

threat. Symptomatic women might wrongly estimate or even deliberately

7

misrepresent symptom duration. Random sample selection defends against

wrong estimates or deliberate misrepresentation in quasi-experimental studies

of five year survival, theoretically distributing such individuals evenly among

sample groupings, but the potential threat to validity is greater in descriptive

behavioral studies. Many investigators, however, have observed that women

mark the timing and exact circumstances of breast symptom discovery quite

carefully (Keinan, et al., 1991; Lierman, 1988; Dodd, et al., 1992; Huguley, et

al., 1988), remembering the time and place of breast symptom discovery

quite vividly.

The Prevalence of Patient Delay

What percentage of women, diagnosed with breast cancer, delay

seeking help for their symptoms? The varying definitions of delay used by

various investigators limit the number of reported studies that can be used in

a meta-analysis of the timing of helpseeking. Thirteen breast cancer studies

published in English language journals since 1975 have examined patient

delay behavior, studied only women with confirmed breast cancer, and

reported the percentages of women who delayed for a uniform time frame of

three months or longer (Katz, et al., 1993; Menon, Teh & Chua, 1992; Rossi,

et al., 1990; Mor, et al., 1990; Freeman & Was■ ie, 1989; Samet, et al., 1988;

Vernon, et al., 1985; Huguley & Brown, 1981; MacArthur & Smith, 1981;

Nichols, et al., 1981; Adam, et al., 1980; Wilkinson et al., 1979; Dennis,

Gardner & Lim, 1975). A frequency weighted average was calculated,

equalizing the influences of differing sample sizes. This meta-analysis

estimated that 33.6% of the breast cancer women were symptomatic for three

months or more before seeking a provider evaluation. Table A-1 in Appendix

A lists the thirteen studies used for this meta-analysis comprising a total N of

9,077 breast cancer women.

There is little to suggest that delay in helpseeking is decreasing over

time. In Antonovsky & Hartman's (1974) review of patient delay behavior the

percentage of women reported to have delayed helpseeking for three months

or more ranged from 33 to 58%, but this review ranged across tumor types

and contained only three breast cancer studies. In the five most recently

published studies the reported percentage of delayed helpseeking ranged

from to 16.6% to 56%, with the frequency weighted overall percentage at

34.4% (combined n = 1,335).

The mandate for earlier case-finding in the United States can be more

concretely visualized by applying the frequency weighted percentage for the

eight USA studies (33.8%, combined n = 8,295) to the expected new breast

cancer cases for 1994. Since an estimated 60-80% of breast cancers remain

self-discovered (Katz, et al., 1993; Muskat & Huncharek, 1991; Rossi, et al.,

1990; Richardson, et al., 1992), using the 1994 estimate of 182,000 new

breast cancer cases, an estimated 109,200 to 145,600 women will newly

discover their breast cancer symptoms in 1994. Using the above meta

analysis estimate of symptom duration (33.6% for three months or more)

would predict that somewhere between 37,000 and 49,000 American women

will have their breast cancer symptoms for three months or more before

seeking an initial provider evaluation. This statistic underscores the

importance of research to identify factors influencing the timing of

helpseeking.

Helpseeking's Influence on Survival

Both patient and provider delay have direct implications for survival of

breast cancer. At least sixteen research studies published since 1975

analyzed symptom duration in relation to five and/or ten year survival, and all

concluded that delay was significantly related to decreased survival

(Richardson, et al., 1992; Nagadowska & Kulakowski, 1991; Neave, et al.,

1990; Rossi, et al., 1990; Freeman & Wasfie, 1989; Machiavelli, et al., 1989;

Huguley, et al., 1988; Charlson, 1985; Vernon, et al., 1985; Robinson, et al.,

1984; Funch, 1984; Gould-Martin, et al., 1982; Elwood & Moorehead, 1980;

Wilkinson, et al., 1979; Fisher, Redmond & Fisher, 1977; Worden & Weisman,

1975).

Although the impact of delaying helpseeking on survival is known to

differ by individual due to tumor growth rate factors, when individuals are

examined as a group, a direct and undeniable relationship is seen between

delay and survival. The consensus reported by all of the studies was that

breast tumor stage at diagnosis increased overall with delay (defined in this

case as symptom duration prior to treatment), and that increased stage of

tumor at diagnosis was associated overall with decreased survival.

10

Essentially this work provides documentation for the relationship between

delayed helpseeking and survival that was only assumed in earlier reviews of

delay behavior (Pack & Gallo, 1938; Antonovsky & Hartman, 1974; Green &

Roberts, 1974).

Fisher and colleagues (1977) observed that this relationship between

delayed helpseeking behavior and survival was not linear, suggesting that

other variables must play a part in determining survival. Biological tumor

variables such as size of tumor, steroid receptor status, histology, presence

of positive axillary nodes, and the frequency of skin and nipple involvement

have since been more fully explored in relation to symptom duration as

predictors of survival (Neave, et al., 1990; Rossi, et al., 1990; Machiavelli, et

al., 1989; Charlson, 1985; Vernon, et al., 1985).

Several studies have reported delay to be insignificant to survival once

stage of tumor at diagnosis is taken into account (Machiavelli, et al., 1989;

Charison, 1985; Vernon, et al., 1985). The ill-conceived use of statistical

methods of data analysis might be the culprit responsible for this dangerous

and illogical inference. As mentioned previously, one can expect a high

correlation between the variables "tumor stage," "tumor size/mass," and

"symptom duration" (often considered by the investigators as synonymous

with delayed helpseeking). Multiple regression data analyses which include

all of these variables, particularly hierarchical regressions where tumor stage

is introduced first as a covariate, will produce results indicating that delayed

helpseeking contributes no additional explained variance. This situation is

11

perhaps an exquisite example of when theory must guide analyses. The

fundamental concern is to reduce mortality through early case-finding and

toward that end to identify changeable variables that might be targeted for

interventions. No health care purpose is served by diminishing the

importance of the delayed helpseeking behavior variable in research reports.

Demographic Variables Believed Influential to the Timing of Helpseeking

Who are the women at risk for delayed helpseeking for breast cancer

symptoms?. Much of the research on delayed helpseeking has been focused

on the study of differences in symptom duration and stage of disease at

diagnosis between different segments of the population. Large data pools

which include demographic variables have invited this type of epidemiological

research. Observed correlations between delayed helpseeking and particular

demographic descriptors identify target groups for potential intervention

studies.

Race and Racism - The Greater Threat for African American Women

The Incidence of Breast Cancer

The number of new breast cancer cases in African American women

for 1991 was estimated at 15,000, with the number of deaths due to breast

cancer estimated as 4,850 (ACS, 1991). This represents a lower incidence

rate in African American (75.2 per 100,000) compared to Caucasian American

(88.8 per 100,000) women. The exception to this relationship is the incidence

12

of breast cancer by race in women under forty years of age. In this age

group African American women have a higher incidence rate for breast

cancer than Caucasian American women (Baquet & Rincon, 1986; Grey,

Henderson, & Pike, 1980; Krieger, 1990). It remains unclear whether this

Crossover in incidence rates which has been apparent in age-specific breast

cancer incidence data since 1969, is a result of social or biological factors.

Survival of Breast Cancer

Many investigators have reported decreased survival of breast cancer

in African American women' as compared to Caucasian American females

(Huguley & Brown, 1981; Vernon, et al., 1985; Marshall, Gregorio, & Walsh,

1986; Natarajan, et al., 1985; Dayal, Power, & Chiu, 1982). The National

Cancer Institute (NCI) data for the years 1983-1989 report that survival of

female breast cancer differs significantly by race, with Caucasian American

females having an overall five-year breast cancer survival rate of 81% and

African American women only 64% (National Cancer Institute, 1986; 1989;

Boring, Squires, & Montgomery, 1994). This gap has widened by 5% in

'Language referents to race and ethnic group change over time and

generalize without attention to diversity within populations. National Cancer

Institute statistics are currently reported in terms of the descriptors: Non

Hispanic White, Hispanic, Black, American Indian, Asian, and Other/Unknown

(Steele, et al., 1994). Self-referents for these same populations include, but

are not limited to, 'Black' and 'African American,”Latino,' etc. Ambiguities

remain as to whom is being referred to in particular contexts.

13

relation to the five-year survival rates by race reported in 1977-1979 NCI data

(Boring, et al., 1994), and the rate of 64% in African American women

represents no significant change in breast cancer five-year survival in Black

women since 1974. African American women's survival of the disease is

strikingly lower within each stage of the disease (Boring, Squires, & Tong,

1994).

Biological factors such as higher percentages of estrogen receptor

negative tumors and less well differentiated tumor histology may account for

some of this observed difference in survival by race (Valanis, Wirman, &

Hertzberg, 1987; Bain, Greenberg, & Whitaker, 1986, Natarajan, et al., 1985;

Hubay, et al., 1984; Freeman & Wasfie, 1989; Neave, et al., 1990,

Montgomery, et al., 1985; Crowe, et al., 1986; Leffall, 1981; Pegoraro, et al.,

1986). Marked differences have been seen in histologic grade of tumor in

Blacks (more undifferentiated tumors) when compared to the referent group,

Non-Hispanic Whites. There are also noted differences in tumor type. Blacks

have fewer lobular tumors, and more invasive compared to in situ ductal

tumors. However, interpretation of these differences is complicated since

increased duration of symptoms is related to both cell differentiation and

tumor invasiveness. Both of the noted differences by racial group could be a

function, in part, of symptom duration prior to diagnosis.

Nonetheless, African American women are universally reported to have

overall significantly more advanced stage of tumor at diagnosis than

American women in general (Hunter, et al., 1993; Dawson & Thompson,

14

1990; Swanson, et al., 1990; Swanson, et al., 1993; Vernon, et al., 1985;

Richardson, et al., 1992; Marshall, et al., 1982; Natarajan, et al., 1985;

Mandelblatt, et al., 1991; Saunders, 1989; Coates, et al., 1992) and

decreased overall survival of breast cancer (Farley & Flannery, 1989;

Natarajan, et al., 1985; Vernon, et al., 1985; Marshall, Gregorio, & Walsh,

1982; Dayal, Power, & Chiu, 1982; Huguley & Brown, 1981). Reports from

the NCI Surveillance, Epidemiology and End Results (SEER) Program

(Ragland, Selvin & Merrill, 1991; Bain, Greenberg & Whitaker, 1986; Boring,

Squires, & Tong, 1992), the American College of Surgeons' Commission on

Cancer (Natarajan, et al., 1985), and the Michigan Cancer Foundation

Prognostic Study (Ownby, et al., 1985) have documented larger diameter

tumors and increased numbers of positive axillary nodes in Black women in

the United States when compared to Whites.

Longer duration of symptoms prior to helpseeking is believed to

account for some of the noted difference in five year survival by race. In fact,

African American women were reported to have delayed helpseeking longer

than Caucasian American women in at least ten recently published studies

(Hunter, et al., 1993; Lauver, 1992; Coates, et al., 1992; Richardson, et al.,

1992; Mandelblatt, et al., 1991; Saunders, 1989; Ownby, et al., 1985;

Natarajan, et al., 1985; Bain, et al., 1986; Vernon, et al., 1985). In most of

these studies this group difference is simply reported, illuminating none of the

underlying reasons for the difference and thus providing no guidance for

intervention. Many of the recently reported studies analyze data from twenty

15

to forty years ago raising doubts about whether their reported results

describe the current African American population. Recently, however, Hunter

and colleagues (1993) analyzed data from the NCI's Black/White Cancer

Survival Study of women newly diagnosed in 1985-1986 (Howard, et al.,

1992). They reported that up to 50% of the excess risk for late stage at

diagnosis of breast cancer in Black women compared to White women may

be accounted for by "the intrinsic tumor biology and by the lack of current

knowledge and practices in breast cancer prevention" (1993, p. 1135).

Socioeconomic status - Poorer Women Again at Increased Risk

Fortunately, several studies have provided clues about what might be

underlie this observed difference in helpseeking between racial groups.

Poverty and diminished access to breast cancer screening and early case

finding is believed to account for much of the differences in the stage of

tumor at diagnosis by race (Dennis, et al., 1975; Ragland, et al., 1991; Dayal,

et al., 1982; Mandelblatt, et al., 1991; Richardson, et al., 1992; Freeman &

Wasfie, 1989). Others have documented that African Americans utilize health

care services proportionately less, regardless of their degree of illness

(Neighbors, 1988; Broman, 1987; Blendon, et al., 1989), attributing this to a

relative lack of monetary resources that can be spent on health care.

A study by Dayal, et al. (1982) examined factors related to survival in a

sample of 515 Caucasian American and 388 African American New York City

women treated for breast cancer between 1968 and 1977. After controlling

16

for age, stage, and socioeconomic status, racial differences in survival

became insignificant. Race and class were highly correlated in this sample,

however, and although this study is widely quoted, separation of the effects

due to race-related biological and cultural factors versus poverty per se in this

sample is not possible.

Dennis, et al., (1975) suggested that the overt racial discrimination

practices of the 1940's and 1950's, which found white doctors in some states

scheduling night office hours for Negro patients to avoid offending their White

patients (Stack, 1974), may have given way to covert racial biases in health

care environments. They reported that providers significantly delayed

treatment for the African American women compared to Caucasian American

women in their sample. Other findings suggesting prejudicial treatment by

race have been reported by other investigators. A lack of respectful

treatment was reported by 43% of the Black and Hispanic patients of a Los

Angeles medical clinic in a study reported in 1991 by Haynes. Harrell (1992)

reported Black women refusing a prenatal program to decrease low birth

weight in their infants because of disrespectful treatment by providers and

clinic staff. And as recently as February 6, 1994 an interview of African

American breast cancer survivors appeared in the Los Angeles Times

magazine telling of poor women of color receiving insensitive care from

physicians (Coleman, 1994).

17

The Interaction Between Race and Poverty

Large epidemiological studies of tumor registry data from New York,

Texas, California, Detroit, and Connecticut suggest that it is the combined

demographic descriptors of African American race and lower income that

predisposes women to late staged breast tumors at diagnosis (Richardson, et

al., 1992; Mandelblatt, et al., 1991; Farley & Flannery, 1989; Satariano, et al.,

1986; Vernon, et al., 1984). These tumor registry studies are unanimous in

reporting that the combined descriptors of African American race and lower

socioeconomic status are associated with delayed helpseeking, increased

stage of tumor at diagnosis and decreased survival. That the effects of

poverty may not be as costly for other racial groups is supported by a study

by Farley and Flannery (1989). They observed no difference in tumor stage

by socio-economic status (SES) in the Caucasian American women in their

sample but increased tumor stage in low SES African American women.

One study presents a snapshot of this key breast cancer subgroup.

Freeman & Wasfie (1989) studied a sample of 708 breast cancer patients

from a Harlem, New York, hospital center (1964-1986). All were poor, 48%

were without medical insurance, 46% were covered by Medicare or Medicaid

and the remaining 8% had private insurance, nearly all had significant co

morbid conditions (diabetes, hypertension, and ischemic heart disease) in

addition to their breast cancer. Stage Ill and stage IV tumors were seen in

43% of the study sample. Eighty-six percent presented with a self

discovered breast mass, with 12% of these also having nipple discharge,

18

pain, and breast ulceration. At least 56% of the patients delayed seeking

treatment for three months, with 29% delaying for at least six months. This

me frame for help-seeking is consistent with other reported studies of

African American women (Vernon, et al., 1985; Dennis, et al., 1975).

Freeman and Was■ ie attributed the duration of symptoms prior to helpseeking

to factors related to poverty.

Studies examining racial differences in survival in relation to

helpseeking have failed to separate the effects of environmental versus

biological influences. Clear evidence of the degree to which this difference in

survival within stage is biological (genetic predisposition, tumor histology,

hormonal response, etc.) or environmental (nutritional status, access to care,

treatment options, etc.), or both, remains to be determined.

Older Age and Helpseeking

Women who initially present with advanced breast cancer disease

(distant metastases) are more likely to be elderly according to SEER data on

the 125,000 women diagnosed between 1973 and 1984 (Yancik, et al., 1989).

This same relationship has been reported in other large scale studies (Samet,

et al., 1986; Allen, et al., 1986). Some ambiguity is introduced in this

relationship by studies reporting the percentages of women who describe

themselves as delaying the evaluation of their symptoms. In 1974

Antonovsky & Hartman reported a consensus in their reviewed studies that

older persons delayed helpseeking for cancer symptoms significantly longer

19

(all cancer sites, three of them breast studies). But contrary to the

Antonovsky & Hartman (1979) review, ten studies of breast cancer women

published since 1975 report no difference in the timing of seeking evaluation

of breast cancer symptoms by age (Menon, et al., 1992; Ajekigbe, 1991;

Rossi, et al., 1990; Adam, et al., 1980; Elwood & Moorehead, 1980; Dennis,

et.al, 1975; Huguley, et al., 1988; Worden & Weisman, 1975; Samet, et al.,

1988; Saunders, 1989). Recent studies have, however, reported that older

women are less likely to receive a breast examination from a professional

provider (PBE) than younger women (Celetano, Shapiro, & Weisman, 1982;

Senie, et al., 1981; Crawford & Cohen, 1985), and less likely to receive care

by a gynecologist rather than a general practitioner (Celetano, et al., 1982).

Two of the above studies added older age as a predictor of late staged

tumor presentation (Mandelblatt, et al., 1991; Satariano, et al., 1986). Using a

logistic model Mandelblatt and her colleagues estimated that Black, poor,

older women, receiving care in a public hospital, were 3.75 times as likely to

present with late-staged (regional and distant metastases) breast tumors than

white, younger, higher income reference group women receiving care in

private hospitals.

Only one study reported a significant association between delayed

helpseeking and older age (Nichols, et al., 1981). In their sample of British

women awaiting biopsy, age was reported to be associated with both

delayed helpseeking and eventual malignant diagnosis. That age should be

associated with malignancy is consistent with incidence curves for breast

2O

cancer, but confidence in the reported relationship between patient delay and

age in this sample is somewhat limited by the fact that only 8% of Nichols'

sample was age 65 years or older, with the "very elderly" being excluded from

sample selection.

Of particular importance is the reality of advanced tumor stage at

diagnosis in this age group. Since the treatment practices and potential for

cure of breast cancer in women of advanced age can be shown to have

improved over the years (Samet, et al., 1988; Chu, et al., 1987, Greenfield, et

al., 1987) it becomes increasingly important to understand helpseeking

behavior in this age group. That cancer of the breast remains treatable in

older women in spite of moderate delays in helpseeking is supported by a

new study from Poland. In a study of 325 Polish women over 70 years of

age, 54% of whom delayed helpseeking for more than six months,

Nagadowska and Kulakowski (1991) reported that delayed helpseeking was

associated with the number of cases that were judged to be inoperable but

not with survival overall. Delayed helpseeking was associated with increased

stage of tumor only when women had delayed for more than 24 months.

These findings are likely overstated, the sample having included only women

who were referred for surgical consideration, and excluding those believed to

have tumors too advanced for surgical treatment.

21

Comorbidity issues

Older persons have been reported to delay helpseeking because of

attributing symptoms of illness to normal aging (Samet, et al., 1988, Leventhal

& Prohaska, 1986; Frank-Stromborg, 1986). Symptoms of breast cancer are

thought to be obscured by competing health problems or more disabling

conditions (Rowe & Bradley, 1983; Crawford & Cohen, 1985; Satariano, et al.,

1989; Moritz & Satariano, 1991). In their study of Health and Functioning of

Older Women with Breast Cancer (HFW Study), Satariano and his colleagues

reported that more than 40% of the women had one or more additional,

limiting health conditions (eg. arthritis, heart disease, hypertension)

(Satariano, Ragheb, & Dupuis, 1989; Moritz & Satariano, 1991). The factors

associated with comorbidity in the breast cancer patient were advanced age,

obesity, past history of cigarette smoking, and current excessive alcohol

consumption (Satariano, 1992). These factors are easily recognizable as

among those proposed as possible risk factors for the development of breast

Ca■ hCer.

As discussed above, the Freeman & Wasfie (1989) study reported a

high incidence of comorbidity in their sample of Harlem, New York breast

cancer patients. That this apparently high rate of comorbidity is in fact a

realistic description of the comorbidity burden of older women with breast

cancer symptoms is supported by the Supplement on Aging to the United

States National Health Interview Survey (Satariano, et al., 1990, Guralnik, et

al., 1989). The survey reported that slightly more than 40% of women aged

22

55 to 84 with breast cancer had one or more additional limiting health

conditions, a similar proportion to that expected in the normal age-matched

population.

If symptoms of breast cancer are obscured by competing health

problems, it might be expected that older women with comorbid conditions

would have, on average, more advanced tumors at diagnosis. This was not

the case in the study by Moritz & Satariano (1991). In their study group of

463 older women in Detroit, the presence of comorbidity was associated with

less advanced disease. Tumor growth rates are believed to have a protective

effect against moderate helpseeking delay in this age group.

Demographic relationships can help identify groups at risk for late

staged presentation of breast cancer, but they are not adequate to guide the

interventions themselves. Even if it were the case that gender, race, age,

religious affiliation, marital status etc. were causal rather than correlated

variables for delayed helpseeking, they are not variables amenable to

change. What is needed is a better understanding of why, for instance, age

or race is correlated with delayed helpseeking in a particular study.

Researchers hopeful of increasing breast cancer survival through early case

finding must hope that the reasons why will turn out to be variables that are

amenable to change.

23

CHAPTER 2

A SOCIAL BEHAVIORAL DESCRIPTION OF WOMEN AT RISK

FOR DELAYED HELPSEEKING

Cognitive and Behavioral Variables Associated with Patient Delay

Researchers studying the personal, social and environmental variables

that influence when women seek evaluation of their discovered breast cancer

symptoms have focused on broader investigations of general illness behavior

to examine the specific experience of helpseeking for breast cancer.

Influences on the timing of helpseeking appear to be numerous and

complexly interconnected. All of the research on helpseeking for breast

cancer symptoms has been cross-sectional, it being infeasible for most

investigators to follow large numbers of symptom free women until potential

breast cancer symptoms occur and the women's helpseeking behavior can

be analyzed longitudinally. Most studies of helpseeking have relied

predominantly on chart review or tumor registry data, rather than interviewing

or surveying symptomatic or cancer-diagnosed women themselves. Few

investigators have supplied the research questions that motivated their

investigations or tested hypotheses predicting the timing of helpseeking.

That this body of literature is largely atheoretical is unfortunate in light of the

wealth of social behavioral theory available to guide such investigations.

This chapter organizes prior research on helpseeking for breast cancer

symptoms in terms of the contextual variables typically contained in social

24

behavior theories (Fishbein, 1980; Rosenstock, 1966; Triandis, 1980; Ajzen &

Madden, 1986) as an approach to structure what has been learned about

social behavioral influences on helpseeking. The current investigation

attempts to test some of these commonly observed social behavioral

influences on helpseeking in a sample drawn from a population where

prompt helpseeking is less common, African American women.

Symptom attribution - Cues to Action

Social behavioral theories of illness behavior, most notably the Health

Belief Model (Rosenstock, 1966), would suggest that a cue to action or

motivating influence will result in the increased likelihood of a behavior being

performed. In the case of helpseeking behavior, one might hypothesize that

the discovery of a breast change interpreted as a possible threat might act as

a cue to helpseeking. Therefore, interpreting a symptom as possibly breast

cancer might be hypothesized to predict more prompt helpseeking, and the

lack of this threat interpretation would predict less prompt helpseeking.

In Antonovsky and Hartman's 1974 review, high percentages of the

women in the breast cancer studies were reported as not realizing the

significance of the breast symptom that heralded the arrival of their breast

cancer. Improvement in symptom attribution is not obvious in more current

studies where wrongly attributing breast cancer symptoms to a benign

process has remained a common theme reported by investigators (Dodd, et

al., 1992; Ajekigbe, 1991; Mor, et al., 1990; Adam et al., 1980).

25

Presenting Symptoms of Breast Cancer

The most common presenting symptom of breast cancer is a lump or

mass in the breast, with or with accompanying pain. This presenting

symptom was reported to occur in from 65 to 86% of breast cancer cases in

the seven studies of helpseeking behavior which documented women's

presenting symptoms. As early as 1955, Aitken-Swann & Patterson reported

that experiencing presenting symptoms other than a lump was associated

with significantly greater patient delay. This observed relationship was

supported by seven more recent studies (Adam, et al., 1980; MacArthur &

Smith, 1981; Nichols, et al., 1981; Lierman, 1988; Gould-Martin, et al., 1982;

Richardson, et al., 1992; Feldman, et al., 1983). Two other studies observed

no difference in delay by presenting symptom (Rossi, et al., 1990; Worden &

Weisman, 1975), a difference in findings that might be somewhat attributable

to definitions of delay and small sample sizes. This common observation

suggests that women know that breast cancer commonly presents as a lump

in the breast but that they are less likely to interpret other breast cancer

symptom presentations as threatening.

The reported frequency of initial symptoms other than a lump ranged

as follows: pain (4-12%), bleeding or discharge (2-12%), dimpling or tissue

thickening (3-5%), inverted nipple (2-15%) (Rossi, et al., 1990; Adam, et al.,

1980; MacArthur & Smith, 1981; Nichols, et al., 1981; Leis, et al., 1988;

Lierman, 1988; Freeman & Wasfie, 1989; Gould-Martin, et al., 1982;

Richardson, 1992). In a study by Feldman et al. (1983), 11% (77 of 664) of

26

the women in this study reported having initial symptom presentations that

combined two or more of these symptoms, but no breast lump or mass.

Valanis, et al. (1987), in their study of the records of women who had died

from their breast cancer, observed symptom presentations other than solitary

lumps to be associated with decreased survival. They also observed that

African American women in their sample had significantly higher levels of

symptoms other than or in additional to a lump at the time of presentation of

symptoms: more skin symptoms in the form of peau d'orange (16% versus

5% in Caucasian American women), more palpable nodes (45% versus 23%),

more pain (65% versus 45%), and nipple discharge (25% versus 13%).

Conservative estimates that perhaps 15% of breast cancer cases do

not present with a breast mass would predict that 27,500 women in 1994 in

the United States will experience the onset of breast cancer with initial breast

changes other than a lump. Since these breast cancer symptoms must be

differentiated from symptoms related to normal cyclical hormonal fluctuations,

acute irritations and infections, normal maturational changes, pregnancy

changes, or fibrocystic disease, the initial misattribution of dangerous cancer

symptoms to more common, benign processes might be expected. In this

context, construing the misinterpretation of breast cancer symptoms in terms

of an easily remediated knowledge deficit would be an inadequate

representation of the problem of symptom interpretation.

This difficulty of symptom interpretation confounds the decision to

helpseek, particularly in women who have experienced prior benign breast

27

disease (Adam, et al., 1980; Gould-Martin, et al., 1982; Watson, et al., 1984;

Dodd, et al., 1992). Consideration of the difficulties of breast symptom

attribution should dictate caution regarding judging the appropriateness of

women's behavior in relation to the discovery of a breast change.

Perceptions of the Consequences of Delayed Helpseeking

Social behavioral theorists, notably Triandis (1980) and Ajzen and

Fishbein (1980), would suggest that perceiving the consequences of a given

behavior would influence one's performance of that behavior. Thus,

perceiving the consequences of delaying helpseeking for a potential breast

cancer symptom should predict more immediate helpseeking. Similarly, it

would be hypothesized that lower perceptions of consequences should result

in more delayed helpseeking. Although several investigators have found

perceptions of consequences to be influential to the performance of breast

self-examination (Nemcek, 1987; Champion, 1987), and the use of

mammography screening (Montano & Taplin, 1991), few have investigated

the consequential beliefs operative in relation to helpseeking for self

discovered breast cancer symptoms. Lauver & Chang (1991) used traditional

expectancy-value items (Fishbein, 1980) to create an expectations score,

reporting perceived consequences to be significantly associated with delayed

helpseeking. Timko (1987) reported on a significant relationship between

qualitative descriptions of lower perceived consequences and a lower

helpseeking intention.

28

Both studies utilized a design where well women were asked to

imagine a discovered breast symptom and to indicate their likelihood of

seeking immediate care. These studies are representative of those which

approach the study of helpseeking behavior through the study of the intention

to helpseek rather than helpseeking itself. Social behavioral theory (Fishbein,

1980; Triandis, 1980, Ajzen & Madden, 1986) assumes that one's stated

intention to carry out a behavior is highly predictive of one's actual

subsequent behavior, provided new influences do not occur to cause

changes in one's intention. It is desired that women have the intention to

helpseek rather than not when a breast cancer symptom is discovered, even

if this intention does not result in actual helpseeking in each and every case.

The above discussions of symptom attribution and perceptions of the

consequences of delayed helpseeking focus particular interest on a subgroup

of women who correctly attribute a symptom to breast cancer yet do not seek

an immediate provider evaluation. While a positive association between

cancer attribution and decreased patient delay is often assumed, in fact early

studies were divided on this issue. Two supported the assumption (Roberts,

1956; Harms, Plaut, & Oughterson, 1943) while one study reported an

opposite finding (Aitken-Swan & Paterson, 1955).

Current studies bearing on this question do little to illuminate the

relationship between a woman's attributing her symptom to cancer and the

timing of her helpseeking. Mor, et al. (1990) reported that breast cancer

patients attributed their symptoms to cancer more often (35.8%) than lung

29

(4.1%) or colorectal (9.1%) cancer patients, but they noted no significant

differences in the timing of helpseeking in relation to cancer attribution.

Gould-Martin (1982) and her colleagues reported that women who discovered

a breast lump while performing breast self-examination were more likely to

delay (48%) than those who discovered their lumps accidentally (38%).

Whether the self-monitoring behavior of women who practice breast self

examination might have predicted this observed difference deserves

investigation. In two studies of women's narratives of their breast cancer

symptom discovery Lierman (1988) and Dodd, et al. (1992) several women

told of attributing breast changes to cancer and yet not helpseeking. This

breast cancer population subgroup has not been the focus of any published

investigation of helpseeking behavior, so a clear description of this subgroup

has yet to be formed.

Failing to helpseek while attributing one's symptoms to cancer has not

been the focus of research. Rather anecdotal accounts hypothesize that

fatalistic beliefs and diffuse fears possibly explain this phenomenon.

Economic difficulties, lack of family support through illness, disbelief that

cancer can be cured or that one could survive a surgery, and depression also

seem plausible influences on the decision to delay seeking help for a breast

symptom, particularly if the symptom is attributed to cancer.

The concept of "denial" falls somewhere in the vicinity of discussions of

symptom attribution, although its theoretical connection remains to be

clarified. Antonovsky & Hartman (1974) proposed the possibility of a

30

continuum between denial of symptoms and hypochondriasis, suggesting

that this relationship might be captured by psychological instruments

measuring the concepts of repression and sensitization. Although denial is

commonly discussed in the coping literature, the denial of cancer symptoms

or the possibility of cancer was discussed in only two investigations of

helpseeking behavior since 1975. Denial of a symptom's relatedness to

cancer was associated with delayed helpseeking in a study by Worden &

Weisman (1975). These investigators used the criteria: "reluctance to use the

word cancer," "denial of physical incapacity," and "minimization of the

seriousness of their illness" as a measure of breast cancer denial in their

sample women. In a group of women who had delayed three months and

had palpable tumors, Wool (1986) attempted to demonstrate immature object

relation functioning, a measure of one's ability to develop strategies for reality

testing and cognitive evaluation of such things as breast cancer symptoms.

Small sample size may have limited the power to adequately test her

hypothesis.

Affective Responses to Symptom Discovery

The Green & Roberts (1974) review, which focused specifically on

breast cancer, cited a number of specific fears in relation to the discovery of

breast cancer symptoms. Table 2-1 lists these and others drawn from

anecdotal reports in the helpseeking literature. The list, although perhaps not

31

exhaustive, demonstrates numerous possible manifestations of fear in relation

to the discovery of a breast cancer symptom and the anticipated sequelae.

Table 2-1

A Fear Cascade - Targets of Fear in Relation to a Breast Cancer Symptom

Fear of doctors and hospitals Fear of abandonmentFear of ridicule Fear of loss of control

Fear of embarrassment Fear of loss of femininityFear of chemotherapy Fear of radiation therapyFear of loss of work related role Fear of being dehumanizedFear of illness Fear of losing a sexual partnerFear of the unknown of cancer Fear of painFear of the loss of a breast Fear of isolation

Fear of disfigurement Fear of surgeries/anesthesiaFear of loss of ability to mother Fear of entering a submissive roleFear of unmanageable expense Fear of cancer spreadingFear of death

Anxiety, as an affective response to the discovery of a breast cancer

symptom, has been a focus in five of the studies under review. Lauver &

Chang (1991) reported anxiety as a significant predictor of the intention to

seek care. MacFarlane & Sony (1992) assessed anxiety associated with a

breast biopsy reporting anxiety, measured by a modified version of the State

Trait Anxiety Inventory (STAI) (1970), to be significantly increased in women

who had delayed longer in contacting a physician. Three other studies

(Keinan, et al., 1991; Watson, et al., 1984; Magarey, Todd, & Blizard, 1977)

found no significant relationship between anxiety, variously measured by the

Manifest Anxiety Defensiveness Scale (Millimet, 1970) or the STAl.

32

Several possible explanations exist for the ambiguous results in these studies.

Small sample sizes, sample inclusion criteria, the study of real versus

theoretical symptoms and, particularly, the timing of data gathering limit the

confidence that can be placed in these reported findings. With what degree

of confidence can anxiety levels measured while awaiting breast biopsy

(Keinan, et al., 1991; Magarey, et al., 1977; MacFarlane & Sony, 1992) or |

during hospitalization for mastectomy (Watson, et al., 1984) be said to reflect

anxiety related to the discovery of the breast symptom itself?

Little progress has been made since Antonovsky & Hartman (1974)

broached the idea that both high and low levels of fear may be associated

with longer delays. They proposed a curvi-linear relationship between fear

and helpseeking for cancer symptoms, recognizing that the effects of fear

may differ depending on the context. Research to date has not developed a

model to predict the influence of fears and anxiety on helpseeking for breast

cancer symptoms. Knowledge of what magnitudes of fear might precipitate

or retard action, how fears might inter-relate, and which have dominant status

is also lacking.

Methodological difficulties abound in the study of affect in relation to

breast cancer symptom discovery. The investigator is likely to have access to

the symptomatic woman only after she enters the treatment environment, in

sorre cases weeks to months after her symptom discovery. It is unclear

whether generalized measures of affect are good predictors of behavior in

response to breast symptom discovery. In summary, fear and anxiety in

33

relation to helpseeking behavior would appear to more complex than

reflected in research investigations to date.

Three other affective states were suggested as possibly significant to

delayed helpseeking behavior by Antonovsky & Hartman (1974): guilt, shame,

and embarrassment. These were anecdotal responses reported as reasons

women gave for delaying professional evaluation of their symptoms.

Surprisingly, depression and anger have not been investigated as influences

on the timing of helpseeking for a discovered breast cancer symptom.

Antonovsky & Hartman (1974) viewed affective response in relation to

symptom discovery as patterned by personality trait rather than as situation

limited affective expressions. As such the individual's affective behavior

patterns were more likely to pre-date the arrival of a cancer symptom.

Personality models today continue to support this hypothesis (Costa &

McCrae, 1992; Caspi & Moffitt, 1993), suggesting that women at risk for

delayed helpseeking due to affective behavior patterns could be identified

before breast cancer symptoms occur and targeted for particular

interventions to encourage earlier helpseeking.

Of particular interest might be the relative power of affective response

to predict behavior; whether, for example, the presence of one or more of the

above affective responses will relegate all other potential influences on

helpseeking to secondary importance. Carefully crafted investigations of

wornen's affective responses to breast symptom discovery remain a focus for

future research.

34

Perceived Behavioral Control

Social behavioral theorists, most notably Ajzen and Madden (1986)

and Fishbein and Stasson (1990), have continued the debate regarding

perceptions of control or personal agency as possible influences on behavior,

achieving some consensus that perceived control is most important in the

case of predicting volitional, planned or goal-oriented behavior (Ajzen, 1985;

Ajzen & Madden, 1986; Fishbein & Stasson, 1990). Since it could be argued

that most health related behavior of concern to researchers might be

categorized as volitional, perceived control over the behavior being studied

(in this case, helpseeking) would appear to be an important focus of inquiry.

Perceptions of control over the behavior of helpseeking is a useful theoretical

umbrella under which to place studies of fatalistic beliefs and the patient

provider relationship.

Relinquishing control over one's body and life decisions have been

reported as being strong influences both on the timing of helpseeking

(Ajekigbe, 1991; Owens, Duffy, & Ashcroft, 1985) and on women's anticipated

Helpseeking for a discovered breast lump (Timko, 1987; 1984). Fears of

being forced to undergo a mutilating mastectomy was related to women's

delayed helpseeking in Ajekigbe's study of Nigerian women. Knowledge of

the breast cancer experience and its treatment demands were related to

delayed helpseeking in the women studied by Owens and colleagues (1985).

Tim Ko (1984) provided qualitative descriptions of the desire not to lose

Control of one's everyday life in women asked to imagine the discovery of a

35

breast lump and their likelihood of seeking a provider evaluation. Notably,

44.8% of the women indicated their intention to delay calling the doctor and

rather to self-monitor the symptom for a time not specified. These women

cited desires to maintain control over their day to day experiences and the

intention to retain responsibility for their own health assessment. This study

is provocative in its suggestion that asymptomatic women are not highly

inclined to intend immediate helpseeking for a breast change.

Some researchers, reporting on small sample, qualitative studies,

have reported a possible relationship between fatalistic beliefs and delayed

helpseeking for discovered breast symptoms (Dignan, et al., 1990; Perez

Stable, et al., 1992; Lierman, 1988; Goodwin, et al., 1986), some suggesting

that these beliefs may be particularly significant in the older population of

women (Lierman, 1988; Goodwin, et al., 1986). Deterministic beliefs are often

culturally bound and congruent with past life meanings. In this context, one

might trust that the events of one's life occur in relation to a force or plan

larger than and often unknown to oneself. Such beliefs are often intertwined

with religious beliefs, described in terms of "God's will," "according to nature,"

"Ptarma," "fatalismo," etc.

This metaphysical view of the world is not a minority viewpoint in many

Cultures. The effect of this influence on breast cancer survival is unknown,

but could be hypothesized to have both beneficial and non-beneficial

implications depending on the individual or the context. Some women may

be rinotivated to helpseek by trust in the certainty that they could do nothing

36

else but seek immediate evaluation for a breast cancer symptom. It just as

imaginable that other women might believe that: there is little they can do to

prevent cancer; it is their fate to develop breast cancer; or for them breast

cancer would be a death sentence. It might be hypothesized that

deterministic beliefs may interact with other beliefs about curability or the will

of God, placing some women at risk for delayed helpseeking.

Investigators in two studies examined constructs that might be

hypothesized as conceptually "close" to fatalism. Keinan, et al. (1991) used

the Beck & Weisman Hopelessness Scale (Beck, 1974) to measure

hopelessness in women undergoing biopsy for breast lumps. A small sample

size and the inclusion of women whose symptoms were physician-discovered

limit the confidence that can be placed in their report of no observable

relationship between hopelessness and delay. Worden & Weisman (1975)

reported the feeling of powerlessness as significantly influencing "lagtime" in

seeking care in their sample of 125 patients with a variety of malignant

tumors, 42 of whom were women with breast cancer.

Habits of Helpseeking

The Triandis model of social behavior stresses that habits in relation to

a behavior influence later performance of that same or other similar

behaviors. Early studies have suggested that previous general helpseeking

habits were highly influential in helpseeking for breast cancer symptoms

(King, 1951; Henderson, 1966, Hackett, Cassem, & Raker, 1973). No recent

37

studies have directly tested this hypothesis, but several have reported

relationships between breast-related diagnostic and screening behaviors and

helpseeking behavior. Having a prior history of fibrocystic (benign) breast

disease was observed to be associated with longer patient delays, although

no statistical tests of this relationship are reported (Adam, et al., 1980;

Lierman, 1988; Dodd, et al., 1992; Gould-Martin, et al., 1982).

Several researchers have reported that the practice of breast self

examination is significantly associated with prompt helpseeking for breast

cancer symptoms (Huguley & Brown, 1981; Huguley, et al., 1988; Funch,

1984) supporting the idea that breast health habits might be predictive of

helpseeking behavior in the event a breast cancer symptom is found. This

relationship is not a simple one, however, exemplified by the 20% of the

women in the study by Huguley, et al. (1988) reported as practicing breast

self-examination but delaying helpseeking for a discovered symptom for three

months or more. No investigators have yet reported relationships between

delayed helpseeking and the prior use of mammography screening or prior

experience with professional breast examination.

. Would a person with a chronic illness be more or less likely to seek

help early for a breast cancer symptom? No studies of comorbidity

influences on helpseeking are found in the literature, but theoretical

relationships between helpseeking for concurrent illness and helpseeking for

breast cancer symptoms suggest that this relationship may be more complex.

Factors like the habit of utilizing health care services, an established

38

relationship with a health care provider, and generalized trust in the health

care system would argue for early helpseeking effects. Factors like comorbid

symptoms masking symptoms of new disease, fatalism related to the illness

condition, the belief that the provider has certified one's other body systems

as healthy, reluctance to spend more financial resources on personal health

care, etc., might argue for increased patient delay. Future studies are

needed to explore these hypothetical relationships.

The habits of health care services utilization include not only

experiences with providers but also the habit of using non-traditional healing

practices. Belief in divine healing was reported to be associated with delayed

helpseeking by the Green & Roberts' 1974 review, as was a prejudice against

doctoring and the general lack of confidence in doctors. Ajekigbe (1991)

reported the use of prayer houses and spiritual healing homes (13.5%) and a

preference for herbalists (23.1%) in a study of 2,154 Nigerian women.

Traditional healers and spiritual healing is also common in African American

communities in the United States (Bailey, 1987; Thomas, 1981; Snow, 1983).

Although hypertension studies report traditional healing practices, no studies

have suggested that African American women in the United States currently

seek traditional healers for breast cancer symptoms.

Health food diets and natural cures are commonly used by persons

who experience cancer symptoms. The American Cancer Society maintains

a listing of common but scientifically unproven topical preparations and

dietary methods used by persons in the United States and Western Europe

39

(Rennecker, 1989). The proportion of women who use these cures rather

than seek immediate evaluation and treatment from a provider is not known.

Few researchers have described the self-care practices women might

try in attempting to cure their breast cancer symptoms (Lierman, 1988; Dodd,

et al., 1992). Applying antibiotic ointments to cure ulcerations on the nipple,

changing bras to correct pain under the breast, washing the nipple to clear

nipple secretions, rubbing hardened areas to soften the tissue, applying heat

to reddened, painful skin areas, removing bra padding, and pulling on the

nipple to correct nipple inversion, were all reported as self care actions

women had taken prior to helpseeking. Whether these behaviors are at all

reasonable remains to be assessed in relation to the frequency of occurrence

of benign breast symptoms in the general population.

Social Normative Influences

Contextual variables grouped under the umbrella of "social influences"

include: normative behaviors dictated by significant others (for instance,

spouses, siblings, children, providers), and perceived demands on behavior

related to social roles (Triandis, 1980, Ajzen & Fishbein, 1980). The idea that

women with breast symptoms respond to normative influences from

significant others, particularly their spouses, would predict that married or

partnered women might helpseek more promptly than non-married or non

partnered women. Two studies observed no differences in helpseeking by

marital status (Worden & Weisman, 1975; Rossi, et al., 1990). No studies

40

reported on helpseeking behavior in unmarried women with partners.

Refining the operationalization of this variable to include women in a wider

variety of partner relationships might prove more informative in future

research.

Lauver & Chang (1991) extended the definition of social normative

influence even more broadly, asking women to rate the degree to which eight

types of significant others believed they should seek immediate care for a

breast change. Social norms were not reported as significant predictors of

helpseeking n their study sample. In contrast, utilizing the Theory of

Reasoned action to predict the intention to seek care for a breast cancer

symptom, Timko (1987) reported that social normative influences were

significant predictors of the intention to helpseek.

Delaying helpseeking as a consequence of perceived social role

demands (for instance, mother, spouse, employee) has been reported in the

literature concerning women's general illness behavior (Walker & Best, 1991;

Meleis, 1991; Theorell, 1991; Facione, 1994; Bird & Fremont, 1991; Woods,

1985). Studies of helpseeking for cancer symptoms in tumor sites more

equally distributed between males and females have reported no differences

in the timing of helpseeking by gender (Zilling, Walther, & Ahren, 1990,

Mikulin & Hardcastle, 1987; Marshall, Gregorio, & Walsh, 1982; Marshall &

Funch, 1986).

But many researchers' anecdotal comments, and reports of the

reasons women give for their delayed helpseeking, suggest otherwise.

41

Devoting time and attention to the needs of someone else (Mor, et al., 1990;

Adam, et al., 1980; Dodd, et al., 1992; Worden & Weisman, 1975), taking time

to make domestic arrangements prior to the biopsy (Adam, et al., 1980),

demands associated with summer and school holidays (Adam, et al., 1980;

Lierman, 1988; Dodd, et al., 1992), work related demands (Dodd, et al.,

1992), caring for other ill family members (Adam, et al., 1980; Dodd, et al.,

1992), and the temporary presence of relatives in the home (Adam et al.,

1980) were all suggested as receiving priority over discovered breast cancer

symptoms. Significant support for the hypothesis that role responsibilities

influence helpseeking is added by Dignan, et al.'s (1990) focus group study

of helpseeking for cervical cancer symptoms. They reported women

indicating that they would seek care in relation to the need to fulfill role

responsibilities and only after child care was assured. Future investigators

should test this possible relationship between perceived and/or actual

traditional female role constraints and helpseeking for breast cancer

symptoms.

Facilitating Conditions for Helpseeking

Social behavior theory posits that one's performance of a given

behavior depends on personal and environmental factors that facilitate or

constrain the behavior. Accordingly, one could perform the behavior more

easily, more often, or more quickly and well if there were a preponderance of

factors facilitating the behavior. In contrast, even if one wishes to perform a

■ .

42

behavior, one might not be able to perform the behavior because of factors

that constrain its performance.

Few studies measured factors that might be construed as facilitating or

constraining influences on women's helpseeking behavior, and all of these

examined economic influences on helpseeking in relationship to the ability to

pay for services. A widely asserted but untested belief is that "poverty is one

of the stronger predictors of delayed helpseeking" (Bal, 1991; Freeman, 1991;

McCall, et al., 1991; Mutchler & Burr, 1991). Economic constraints were

reported as affecting women's helpseeking for breast cancer symptoms in the

above mentioned study by Ajekigbe (1991). Lauver & Chang (1991)

examined being fully covered by health insurance in relation to the intention

to helpseek for a proposed breast cancer symptom. They reported observing

no significant relationship between having insurance and helpseeking

intention. This was in contrast to a study by Gould-Martin, et al., (1982)

where lack of health insurance was associated with increased delay. One

can only speculate on the reasons for this difference in reported results.

Perhaps limiting the operational definition of resources to "full coverage

insurance" is too narrow to capture the variance in helpseeking behavior

related to economic resources.

Other studies associated delays in helpseeking with women

belonging to lower socioeconomic groups (Wilkinson, et al., 1979; Gould

Martin, et al., 1982; Farley & Flannery, 1989; Samet, et al., 1988), but none of

these interpreted this relationship in terms of the availability of health care

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services. That so few studies directly addressed women's actual or perceived

access to health care services is striking, and reflects an area of major

weakness in the research to date.

The assumption that women have economic access to treatment for

breast cancer symptoms is unwarranted in many nations (Hongvivitana,

1984). This is no less true in the United States where 34.4 million Americans

are without health care coverage (Popp, 1988; Jaynes & Williams, 1988;

Lerner, 1988; Moyer, 1989), and the poor and middle class have limited

options about when and how they can obtain health care (Bal, 1991;

Freeman, 1991; Brown, 1990; 1991; Davis, 1988). The political and economic

realities of the status of women throughout the world should alert

investigators to the need to explore economic constraints to helpseeking

experienced by symptomatic women.

One can speculate that there are other constraints on helpseeking than

the ability to pay for services. Reported significant influences on health care

utilization include: geographic location of health care centers, community

transportation services, unavailability of childcare services for women

responsible for the care of children, the absence of an established health

care provider, and differences in culture, ethnic group, sexual orientation, or

gender between the women and the prospective provider (Bailey, 1987;

Stevens & Hall, 1988; Bird & Fremont, 1991; Facione, 1994 in press; Davis,

1990; Meleis, 1991). These variables have not been specifically studied in

relation to helpseeking for breast cancer symptoms.

CHAPTER 3

THE TRIANDIS MODEL OF SOCIAL BEHAVIOR

AS A GUIDE TO THE STUDY OF HELPSEEKING INTENTION

Culturally Competent Theory

The American Academy of Nursing's report entitled "Expert Panel

Report: Culturally Competent Health Care" (AAN, 1992) defined cultural

sensitivity in nursing care as an awareness of, and utilization of, knowledge

related to ethnicity, culture, gender or sexual orientation. In this context,

culturally competent nursing research in the area of health and illness

behavior might be defined as investigations that are based on knowledge and

theories that permit explanation of behavior within the context of ethnicity,

culture, gender, and sexual Orientation.

The AAN concern for cultural competency in nursing care signals the

need for research to be guided by theoretical models which clearly specify

the inter-relationships between cultural context variables and behavioral

outcomes, models that have the potential to capture the uniqueness of

diverse populations. Only then can subsequent intervention studies be

expected to respond to culturally relevant health problems and provide

effective health outcomes in today's culturally diverse society. It was within

this context of the need for cultural relevancy in research that the theoretical

model guiding this investigation was chosen.

45

Social Behavioral Models to Study Helpseeking Intention

How can we predict how a woman will respond to the discovery of a

possible breast cancer symptom? This question defies an answer when

divorced from the personal, social, environmental, and health status context

of the individual. The appreciation of the importance of all the diverse

aspects of culture as key to the development of nursing knowledge and

effective nursing care is certainly not a new perspective for either the nurse

clinician or the nurse scientist (Spector, 1991; Clinton, 1982; Lipson & Meleis,

1983; Stevens & Hall, 1988; Thompson, 1991; Funkhouser, 1990; Jemmott &

Jemmott, 1991; Meleis, Lipson, & Paul, 1992). Acknowledging the complexity

of human behavior and the range of cultural diversity within American society

today, many researchers might despair of even the possibility of a culturally

sensitive theoretical model to guide the study of health and illness behavior.

But nursing research is not for the faint at heart, and promising models which

had their beginnings in the field of social psychology continue to be

developed and tested by theorists from all disciplines including nursing

(Montano & Taplin, 1991; Lauver & Chang, 1991; Lierman, Kaspryzk, &

Benoliel, 1991; Jemmott & Jemmott, 1991).

Health behavior researchers have most frequently used Rosenstock's

Health Belief Model (HBM) (Rosenstock, 1966) to examine perceptions of the

seriousness of, susceptibility to, benefits of, and barriers to performing a

given health or illness behavior. Survey instruments based on the HBM have

typically been approached as culture-neutral rather than being developed to

:■ *

46

capture cultural variation. Not an intrinsic weakness of the HBM itself, this

communality is rather reflective of a research tradition that: tended to ignore

culture as a variable, studied predominantly Caucasian groups, designed

across-culture rather than within-culture studies, and tended to view many

aspects of diversity as deviance rather than variance. As a result, behavioral

studies utilizing the HBM frequently fail to examine powerful socio-cultural

factors such as poverty or religious beliefs that might be important to the

behavioral outcome. Most exemplary of a sustained effort to develop valid

and reliable measures is the work of Champion (1984; 1985; 1987; 1991) in

relation to breast self-examination behavior. The HBM variable that has

proven most predictive of breast self-examination is "barriers," women who

perceive barriers to performing BSE being significantly more likely not to

perform this breast cancer screening behavior. This variable consistently

predicted more variance in BSE behavior that perceived seriousness of breast

cancer, perceived susceptibility to breast cancer, or breast cancer related

health beliefs.

Two other models, the Theory of Reasoned Action and the Theory of

Planned Behavior, developed by Icek Ajzen and Martin Fishbein (Fishbein,

1980; Fishbein & Stasson, 1990, Ajzen & Madden, 1986; Ajzen & Fishbein,

1980) have also been used extensively for studies of a wide range of health

and illness behavior (Powell-Cope, et al., 1991; McCarty, 1981; Pender &

Pender, 1986; Chassin, et al., 1984; Miller, Wickoff, & Hiatt, 1992; Hendricks,

Freeman, & Sheiham, 1990; Timko, 1987, Jemmott & Jemmott, 1991). These

47

theoretical models stress consequential beliefs and social normative

influences as predictive of the intention to carry out a health-related behavior

and subsequently the performance of the behavior itself. The Theory of

Planned Behavior (Ajzen, 1987, Ajzen & Madden, 1986) adds the variable of

perceived control, one's perception of control in the situation hypothesized to

influence both one's formed intention to perform a behavior and the behavior

itself. These theories have also performed well in health behavior

investigations, commonly explaining 40-60% of the variance in the health

behavior under study (McCarty, 1981; Chassin, et al., 1981; Jemmott &

Jemmott, 1991; Timko, 1987).

The Triandis Model of Social Behavior

The Triandis model, less well known by health care researchers but

providing equally powerful results (Montano, 1986; Lauver & Chang, 1991;

Lierman, et al., 1991; Montano & Taplin, 1991), has superior promise for

culturally sensitive research (Triandis, 1977; 1980). Beginning with the

assumption that most behaviors which attract the interest of researchers are

rational, reflective behaviors (rather than reflexive, automatic behaviors), the

Triandis model builds on Kurt Lewin's Motivational Theory (1935). Arising

within the context of Triandis' research interest in cultural diversity (Triandis,

1972; 1976; Davidson, et al., 1976; Davidson & Thomson, 1976), the model

acknowledges cultural diversity as contributing to differences in behavior.

48

Much testing and contrasting of these various models, stressing their

relative strengths and weaknesses can be found in the research literature

(Wallston & Wallston, 1984; Godin, 1987; Liska, 1984; Miniard & Cohen,

1981; Sheppard, Hartwick, & Warshaw, 1988; Valois, Desharmais, & Godin,

1988, Warshaw & Davis, 1985; Bagozzi & Yi, 1989; Bentler & Speckart, 1979).

Variables from the models have much in common conceptually, a factor that

has encouraged researchers' eclectic creativity in their search for best models

to address particular health issues (Montano & Taplin, 1991; Lierman, et.al.,

1991). Table 3-1 lists the conceptual definitions of the variables included in

the Triandis model.

According to the model the determinants of an individual's performing

(or not performing) any given behavior (B) are: one's intention (I) to perform

(B), one's prior habit (H) of performing (B), relevant physiological arousal (P)

to perform (B), and the facilitating factors (F) in the environment that assist

(or constrain) the performance of (B). The following equation represents the

relationship between model variables as originally suggested by Triandis.

(B) = [w(■ ) + w(H)] (P) x (F)

The (w's) are weights expressing individual differences. Triandis

conceptualized (F) as being scaled between 0 and 1. When facilitating

conditions are most favorable for (B) to occur, (F) = 1. When they are most

unfavorable, (F) = 0. Similarly (P) ranges from 0 to 1. When there is no

arousal to perform (B), (P. = 0. When there is sufficient arousal to perform

(B), (P) = 1. Researchers who have tested the Triandis model to study

49

Table 3-1

Conceptual Definitions of the Triandis' (1980) Social Behavioral Model

Behavior (B) and Behavioral Intention (I)Behavioral instructions that individuals give themselves. Morespecifically, to perform or not to perform a given behavior. Theresearcher may be concerned with predicting the likelihood ofthe behavior itself or the intention of performing the behavior.

Perceived Consequences (C)An individual's estimation of the positive or negativeconsequences of performing or not performing a given behavior.

Affect (A)Feelings associated with a given behavior: joy, elation, pleasure,depression, disgust, displeasure, hate, fear, etc.

Social Normative Factors (S)The individual's internalization of the referent group's subjectiveculture; specific inter-personal agreements an individual hasmade with others regarding a given behavior.

Relevant Physiological Arousal (P)Either high drive to perform a behavior or situational factorsrelevant to the individual's values that may increase theprobability of performing a given behavior.

Habit Hierarchies (H)Situation-behavior sequences that have become automatic, sothey occur without self instruction. Habit hierarchies reflect boththe ability to perform a given behavior and past learningexperience, such as rewards or punishments, associated withperforming the behavior.

Facilitating Conditions (F)Environmental resources, present or absent, that facilitate orconstrain the performance of a given behavior. These facilitatingconditions may ultimately be the reason for the behavior notbeing performed, even if the intention () is high, habits (H) arewell established, and physiological arousal (P) is optimal.

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health and illness behaviors have chosen to express the relationship between

variables somewhat differently. Montano (1986), for instance, measured (F)

with 7-point Likert scale items measuring familiarity with immunization

procedures and access to the immunization site in his study of influenza

vaccination behavior.

Although the (P) variable seems quite central to the prediction of (B) in

Triandis' model, it has not been extensively developed, and studies testing

the model frequently omit this variable. Lauver & Chang (1991) deleted

consideration of this variable in their study of seeking care for a breast cancer

symptom, considering it to be redundant to the affect (A) variable. Montano

(1986) omitted discussion of the (P) variable, as did Valois and colleagues

(1988) in their study of exercise intention. Eliminating the (P) variable,

considering how few tests of the complete Triandis model have been

reported, would seem unwise. Within this variable would seem to lie the

motivation to perform any context relevant behavior in relation to the problem

being studied. For instance, the perception of a breast change mediated by

the interpretation of that change might be the appropriate indirect measure of

(P) for a study of helpseeking behavior.

The investigators in the studies cited above typically used multiple

regression analyses, as suggested by Triandis, to examine the predictive

power of the model. Prediction, in this discussion, refers to explanation of

shared variance in a regression analysis and as such is, strictly speaking, an

51

associational relationship rather than predictive. The equation that correctly

expresses a regression analyses of these predictor variables is:

(B) = w () + w(H) + w(F)+ w (P)

A multiple regression model is also suggested to predict the intention

(I) variable as a function of one's beliefs about the consequences (C) of

performing (or not performing) the behavior, one's affect (A) toward the

behavior, and social influences (S) one experiences in relation to the

behavior. Again the regression weights (w's) are expressions of individual

difference. This relationship is expressed in the equation:

(1) = w(C) + w(A) + w(S)

The Triandis variables typically are measured through the use of Likert

style item scales or semantic differential scales. The scales are constructed

with a balance between inclusion of all salient items and concern for

responder burden. Scale totals are used as variable values for inclusion in

the regression analysis.

Researchers are directed by Triandis to match model variable scales

with the cultural context of the intended study population. When choosing or

designing instruments to measure the model variables the researcher must

endeavor to exhaustively measure the salient, culturally relevant, aspects of

the variable that relate to whatever behavior is being studied. The

operationalization of each model variable might be expected to differ

depending on how the study population is defined in terms of gender, age,

racial/ethnic group, or class. Theoretically the amount of explained variance

52

obtainable in a given investigation is directly related to the representation of

salient aspects of each variable in the measurement tool(s). It can be seen

that this model is structured to examine health and illness behavior within

cultural groups rather than across cultural groups. The goal here is not to

measure communalities between cultural groups that account for health and

illness behavior, but rather to examine health and illness behavior in a context

that will permit unique cultural differences to be discovered and analyzed for

their power to predict the behavior under study.

That the nurse researcher may not be certain what the culturally salient

items are that should be included in the survey is a testimony to how well or

poorly we have done culturally sensitive research in the past on the particular

health or illness behavior. If salient beliefs can only be speculated upon

(such was the case with the above example), then, as was the case in this

study, preliminary qualitative key informant interview or focus group work can

be used to inform the structuring of a new instrument or the possible

modification of an existing instrument. The subsequent empirical study can

then be used to test the proposed relationships and to add support for the

generalizability of small study reports to larger, within-culture populations.

The Triandis model invites a culture specific operationalization of each

study variable. Gender issues can be explored through Triandis' (S) variable:

self-concept, social normative influences, and role constraints. The realities

of the availability and affordability of health care (Harrington & Estes, 1994;

Butler, 1988), can be modeled through measures of resource factors

**

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53

facilitating or constraining utilization behavior, the Triandis (F) variable. Since

rarely if ever are health or illness behaviors entirely unique, the inclusion of

experiential learning or habit formation (H) is a strength of the model.

Some Potential Limitations of the Triandis Model

The Triandis model exhibits the linearity common to models which

predate later insights on the recursive nature of cognitive processing.

Triandis model variables expected to predict behavioral intention will be

referred to as Model 1. (See Figure 3-1).

PERCEIVED CONSEQUENCES

AFFECT BEHAVIORAL

INTENTION

SOCIAL FACTORS

Figure 3-1. Triandis Variables Measuring Behavioral Intention (Model 1).

54

Critics of the model have suggested a more recursive modeling of

directional relationships between Triandis model variables (Liska, 1984;

Warshaw & Davis, 1985). Previous learning from performing the given (or a

similar) behavior might in this case be expected to influence one's

consequential beliefs about the behavior (C), one's affect toward the behavior

(A), one's perceptions of the social norm or one's role expectations in relation

to the behavior (S), the formation of the habit of performing the behavior (H),

and one's awareness of one's resources in relation to the behavior (F).

The recursivity of reflective judgment and decision-making becomes

particularly important when the concern is to predict the intention (I) to

perform a given health or illness behavior rather than the behavior (B) itself.

Rather than including only the (C), (A), and (S) variables to predict (I), the

variables (H) and (F) might also be hypothesized to explain some of the

variance in the intention to carry out the behavior (B), acknowledging one's

foreknowledge of one's available facilitating resources (F) and one's prior

behavior (H). Several groups of researchers utilizing the Triandis model to

study illness behavior have assumed a more recursive model (Godin, 1987;

Valois, et al., 1988; Montano, 1986; Lauver & Chang, 1991). Other

researchers have reported using Ajzen & Fishbein's Theory of Reasoned

Action (Ajzen & Fishbein, 1980, Fishbein, 1980) with the addition of the

Triandis model (A), (H) and/or (F) variables, effectively creating the Triandis

model (Lierman, et al., 1991; Montano & Taplin, 1991; Timko, 1987). The

theoretical expansion of the Triandis model, including all Triandis variables

55

proposed as influential to behavioral intention, will be referred to as Model 2.

(See Figure 3-2). Both Model 1 and Model 2 will be tested for their relative

contribution to the study of helpseeking intention.

PERCEIVED CONSEQUENCES

AFFECT

SOCIAL FACTORS

BEHAVIORAL

HABIT INTENTION

FACILITATING CONDITIONS

RELEVANT AROUSAL

Figure 3-2. Theoretical Expansion of Triandis Variables PredictingBehavioral Intention (Model 2).

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The assumption of variable independence is somewhat problematic in

the Triandis model. Miniard & Cohen (1981) point out that in models of

behavior that contain personal and social components, these components are

not independent, and therefore such models cannot be used to measure the

separate contributions of one's personal beliefs and one's social normative

beliefs on behavior. This criticism points to the likelihood of at least some

degree of collinearity between variables in the model. Multicollinearity

between model variables complicates the assessment of the explanation of

variance related to individual model variables. What is ascertainable is an

estimate of which variables contribute significantly to the explanation of the

variance in helpseeking intention and an estimate of the overall amount of

variance explained by the models tested.

One last potential limitation of Triandis' approach to culturally relevant

measurement is that measures require assessment of their validity and

reliability. Concurrent validity with other existing scales is usually

problematic, in that correlations between the developed scales and existing,

culture-neutral scales might offer little insight as to the developed scales' true

value to measure a culture-specific variable. Content validity is supported by

developing and piloting the instrument with the assistance of same-population

focus groups or key informants. Alpha coefficients of adequate magnitude,

when the instrument is subsequently used in a study sample, will add support

for the reliability of developed scales for use in other groups within the same

cultural population. Any significant change in new populations to be studied

57

theoretically requires some adaptation of the survey scales to address the

new cultural diversity.

The current study of helpseeking was conducted as described above.

A within culture design was chosen to explore helpseeking behavior in the

population most at risk for delayed helpseeking, African American women.

Focus groups were held to determine the scope and culturally relevant

concerns of African American women in relation to helpseeking for breast

cancer symptoms. The focus group data were used to develop a survey

instrument with scales corresponding to the Triandis Model variables. The

survey was then administered in a new sample of women. Scale reliabilities

were calculated and the newly developed scales were used as measures to

begin to address the question of factors influential to the timing of

helpseeking in this population. The following chapters more fully describe

this process and the results of the analyses.

58

CHAPTER 4

METHODOLOGY: A THREE STEPPED PROCESS

Chapter 3 discussed the choice of the Triandis model as superior to

guide a culture relevant study of helpseeking intention. To achieve maximal

levels of cultural relevance in measurement of the study variables a three

stepped methodology was chosen. The first step entailed focus groups to

map the cultural domain of helpseeking behavior for breast cancer

symptoms. The second step used qualitative data from these focus group

sessions to construct survey items which were then critiqued by the focus

group women. The third step used the newly developed survey questionnaire

in a new sample of women to assess helpseeking intention. This chapter

discusses the methodology of each of these steps in detail.

Focus Group Methods

This study selected as focus group participants adult, African American

women not currently being evaluated or treated for breast cancer symptoms,

and with no prior history of breast cancer. During the year prior to the start

of the project this investigator met with African American women at numerous

community settings to describe the planned investigation.

Beginning in the Fall of 1992, women who had been identified as

potentially interested in participating in the project were approached about

becoming a 'nucleus' of a focus group. A woman was chosen as the nucleus

■º

4,

:

59

of a focus group if, after being fully informed of the study, she agreed to

participate and was willing to identify four to six other women who might be

approached as possible participants in the focus group. This method of

building a focus group helped to assure that the participating women were

previously acquainted, improving the potential for frank discussion of what

were expected to be relatively intimate breast related issues. Only women

were invited to participate in the focus groups, as the presence of male

partners was believed to possibly inhibit disclosure. Participation of female

family relations were encouraged as a tactic to increase the social normative

content of the data.

After an initial telephone contact by the nucleus women or this

investigator, letters of invitation and consent forms (See Appendix B) were

mailed to each woman describing her focus group participation and providing

the time and place of the planned meeting. Focus groups and interview

sessions took place in homes, office conference rooms and a restaurant

conference room. Women participating in focus groups received a token

remuneration of $15.00 to symbolize the value of their participation and to

defray any expenses they might incur. Child care and transportation were

offered to facilitate participation, but all women chose to make their own

arrangements for these needs.

Four focus groups of three to six women were held over a six month

period. Two individual interviews were also held with women who wished to

participate but where situations precluded organization of a larger group. In

60

all, 22 African American adult women were recruited from women's

organizations, churches, or other community organizations in the Bay Area

cities of East Palo Alto, Menlo Park, Oakland, San Jose, and San Francisco.

The age of the women ranged from 20 to 76 years, distributed across the age

decades: twenties (n = 5), thirties (n = 4), forties (n = 5), fifties (n = 5), and

sixties/seventies (n = 3). Women were selected to range across family

income (under $9,999 per year to over $60,000), partnered status and

employment status in the hope that the voices of women from a wide range

of age, economic and social groups would be represented in the focus group

discussions. Acquaintance group design resulted in women of like age and

income being part of the same focus group. Half (n = 11) of the women

were currently employed outside the home. Nine were currently involved in

university courses or trade school training. Nine of the women were currently

married or partnered, four were widowed, and the remainder described

themselves as single without a current partner (n = 9).

Written invitation materials, planned questions, and planned

introductory remarks (See Appendix B) were used to standardize the

investigator effects on focus group sessions. Planned questions were guided

by the Triandis model and addressed: (a) beliefs about breast cancer in

relation to symptoms, susceptibility and treatability; (b) feelings about breast

cancer symptom discovery and the general threat of the disease; (c) social

relationships and role obligations that might influence the decision to seek

help for a discovered symptom in the breast; (d) resources available to

.

ºº

º■ . º

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61

respond to a discovered symptom, (e) prior experiences and habits in relation

to health care system utilization both for general and breast-related visits; and

(f) family or friends' stories of breast symptom discovery or breast cancer.

The focus group discussions ran for approximately 90 to 120 minutes in

duration. Discussion in each of the focus groups was animated and moved

spontaneously from one planned topic area to another, permitting this

investigator to limit her participation to clarifying or focusing as necessary.

All focus group and interview sessions were audio-taped and

transcribed, protecting the identities of participants. Spoken phrases or

sentence groupings describing or qualifying one idea, opinion or explanation

in relation to helpseeking behavior were treated as the unit of analysis.

These will be referred to as data phrases for ease of communication in the

following text. Some data phrases were quite brief, containing only a

sentence or spoken sentence fragment. In other cases one data phrase

consisted of several sentences that the speaker used to communicate one

important idea, opinion or explanation. Data phrases were substracted from

the transcribed text and were then clustered according to their relevance to

the pre-determined categories dictated by the Triandis model. These data

phrase clusters were later used to develop scales corresponding to the study

variables, a technique described by Silverman (1993). Table 4-1 lists the

names of the developed scales corresponding to each of the Triandis Model

variables.

62

Table 4-1

Scales Developed to Measure Triandis Model Variables

Triandis Model Variable Scale Name

Behavioral Intention (I) |HELPHabit Hierarchies (H) HABITAffect (A) AFFECT, FEARSocial Normative Factors (S) SOCNORM, CONSTRAINTPerceived Consequences (C) CONSEQFacilitating Conditions (F) ACCESS

Note. Physiological Arousal (P) was measured by a dichotomous variable:Presence or absence of a current "worrisome breast symptom."

New Study Variables from Focus Group Sessions

The underlying model was not, however, treated as immutable. Rather

the investigator examined the data for other categories that might be needed

to cover the domain of helpseeking behavior in this cultural population. Data

phrases not related to the Triandis categories were analyzed for unifying

themes. The resulting groupings of data phrases lead to the addition of three

variables as possible influences on helpseeking: perceptions of racism in the

health care system (RACISM); religiousness (RELIG); and fatalistic beliefs in

relation to breast cancer (FATE). The addition of these new variables was

supported both by their spontaneous presence in all of the focus group

discussions and their anecdotal reporting by other investigators in studies of

r:*

■ - 2.º º -

■ º£rºº

f º

f

helpseeking behavior (Goodwin, et al., 1986; Lierman, 1988; Freeman &

Was■ ie, 1989, Haynes, 1991; Harrell, 1992; Richardson, et al., 1992).

Planned Comparative Model Testing

As was discussed in Chapter 3, there is some degree of behavioral

expectancy rather than intention being measured when one is asked to

estimate a behavioral intention before that intention is fully formed, (i.e. before

that behavior is likely to be performed). Recent theories of cognition would

suggest that although variables such as prior habits of helpseeking and

conditions that facilitate of constrain helpseeking might in fact play stronger

roles in the prediction of actual behavior, they nonetheless have a likely

influence on one's expectancy of performing the behavior. Knowledge of

one's prior behavioral habits and one's resources could be expected to figure

in to one's estimation of one's likely behavior. For this reason it is

hypothesized that the full list of Triandis variables (Model 2) will result in

added explained variance in helpseeking intention over the originally

hypothesized Triandis model (Model 1). Models 1 and 2 were discussed in

Chapter 3.

In this study, focus group sessions led to the addition of three

variables to the listing of potential influences on helpseeking intention:

perceptions of racism in the health care system, religiousness, and fatalistic

beliefs. A measure of knowledge of breast cancer symptoms was added in

light of the focus group women's construal of breast cancer symptoms as a

64

"lump" rather than the wider array of breast cancer presentations. This

strategy was also chosen to attempt to quantify helpseeking intention in terms

of breast cancer symptom presentation. Figure 4-1 displays all the variables

that will be explored for their influence on helpseeking intention along with

their measurement scale names. This grouping of variables will be referred to

as Model 3. It is hypothesized that the addition of these variables to the

Triandis model variables will result in additional explained variance in

helpseeking intention.

:

65

PERCEIVED CONSEQUENCES (CONSEQ)—

AFFECT (AFFECT,FEAR)—

SOCIAL FACTORS (CONSTRAINT, SOCNORM)—

HABIT (HABIT)—

RELEVANT AROUSAL (SYMPTOM)—

FACILITATING CONDITIONS (ACCESS)—

RELIGIOUSNESS (RELIG)—

FATALISTIC BELIEFS (FATE).

PERCEPTIONS OF RACISM (RACISM)—

BEHAVIORAL

INTENTION

(IHELP)

KNOWLEDGE OF SYMPTOMS (TYPE)—l

Figure 4-1. Proposed Influences on Helpseeking Intention (Model 3).

rº

º*

f

66

Instrument Design Methodology - A Collaboration

To create scales for each of the variable categories, data phrases were

reframed in the form of questions which could be answered as "true" or

"false," or as statements which could invite a four point Likert response of

"strongly agree" to "strongly disagree." Idiosyncratic jargon typical of spoken

English was avoided to maximize generalizability to the population of African

American women, a strategy suggested by survey researchers (Converse &

Presser, 1991; Spector, 1991; Henderson, et al., 1992; Triandis, 1980).

Concern for possible loss of cultural expression as a result of this strategy

was balanced by the concern of the focus groups to minimize colloquial

phrases that might be interpreted as offensive.

Focus group methodology has been suggested as one approach to

developing measurement tools with both validity and cultural sensitivity

(Ferketich, Phillips, & Verran, 1993; Triandis, 1980). Cultural sensitivity was

defined in this study in terms of three considerations: (a) validity of the

construct within the culture, (b) acceptability in terms of respect for the values

of the culture and (c) significance in terms of issues relevant to the culture

(American Academy of Nursing, 1992; Facione, 1993b). In keeping with this

philosophical approach to measurement and to validate the appropriateness

of the survey item construction, initial drafts of survey items were reviewed by

focus group women in all but the first group as a part of the group session.

The final drafts of the resulting survey were critiqued by focus group women

67

as well as a group of African American nurse researchers for

comprehensibility, cultural acceptability and scope of items.

Survey Methodology

The resulting survey questionnaire was administered by African

American research assistants to a new sample of adult African American

women (N = 352) in the southern San Francisco Bay area. African American

research assistants met with representatives of women's groups in church,

school, and community organizations. They were informed of the purpose

and methodology of the study. Entree to approach women for possible

participation was universally obtained. Women were then contacted by

posted announcements within the organizations. Research assistants also

were present within churches and organizations during meeting times to

recruit possible participants. Those women who indicated interest in the

study were given written consent forms describing their participation.

Participants were remunerated $10 for completing the survey, and all women

asked to consider participating were offered American Cancer Society

literature on breast health, cancer risk factors, breast self-examination, and

mammography. Surveys took on average 30 to 40 minutes to complete. In

some cases women took the surveys to their home for completion and

returned them at an arranged meeting time.

68

Sample Inclusion and Exclusion Criteria

Survey participants were required to be female, respond assertively to

the prompt "I would describe myself as African American or Black," be at least

eighteen years of age, reside in the San Francisco Bay Area community, be

English speaking, and be able to complete a printed survey either alone or

with assistance reading the items. Women were excluded from participating

in the survey if they were currently in treatment for breast cancer or were a

breast cancer survivor. An array of participants across income, age, social

role status, and educational levels was facilitated by targeting senior citizen

groups, business women's groups, teacher's groups, church groups, and

economic assistance programs. Some women also contacted the research

assistants after hearing of the study from others in the community, adding to

the volunteer nature of the study sample as well as to the community's sense

of ownership of the project.

Survey Sample Description

An estimated 550 women were approached as possible survey

participants. Of this number 357 surveys were administered. Of these three

were eliminated because of large amounts of incomplete data on several of

the scale measures and two were eliminated because they were received

after data analysis was complete. For the remainder of the surveys all

codable data were used in the analyses. Careful erasure, and margin

69

comments on many instruments were indications that many women had

taken considerable care in their response choices.

Some have questioned how representative the women living in

California are of women living in other part of the United States. There is an

additional question of diversity within groups, in this case the diversity of

women within the group called African American or Black. To better describe

the sample and to estimate the generalizability of reported relationships, the

women in this study were asked to report the city, state, and country where

they were born. Although 33.2% of the sample women reported being born

in the San Francisco Bay area, women reported being born in more than 148

cities in 30 states, the most common states being Texas (n = 37), Louisiana

(n = 33), Alabama (n = 11), Arkansas (n = 13), Mississippi (n = 15) and

Ohio (n = 10). Only seven of the women reported being born outside the

United States, most of these from United States protectorates. Table A - 2

(See Appendix A) lists other demographic descriptors of the sample.

Women in the sample were of a younger age overall than the

population most at risk for developing breast cancer symptoms (M = 38.65,

range 18-76 years of age, SD = 12.1, SE = 0.66). In spite of the attempts to

obtain respondents across the age categories, fewer women in the older age

groups were willing to complete the survey. In some cases where vision or

reading ability might have been a problem survey questions were read to

respondents by the research assistant or by other family members. But in

other cases the women indicated that questions about breasts were of such

70

an intimate nature that this solution was not acceptable and chose not to

participate. Because of the small representation of women in the older age

groups, reported relationships are limited in their generalizability to the older

age groupings.

On the positive side, the purpose of this study is to learn about beliefs

and values that women hold that might influence their seeking an evaluation

for a self-discovered breast change. Influencing factors that contribute to

delayed helpseeking will require social and behavioral interventions.

Knowledge about an age group young enough to permit the trial of an

intervention is preferable to knowledge about older age group women. As

these women age we will hopefully continue to know more about them as

they approach peak risk years for the development of breast cancer

symptoms.

The majority of women reported household income levels in the very

low income range, with nearly one third of the women reporting household

incomes below $10,000. This is consistent with national figures where one

third of African Americans live below the poverty level, and African American

family income is 56.1% of Caucasian American family income (Mullings,

1989).

Information on social role status was collected on three general social

role descriptions in the survey. An eight category role status variable was

constructed to model multiple role status for the three roles employee,

partnered (refers in this discussion to women with spouses and partners),

71

and child care giver. A large proportion of the sample described themselves

as currently or usually in the employee role (n = 249, 70.7%). The majority

of women described themselves as responsible for regularly providing care to

children (n = 209, 59.4%). The women in the sample were more likely to be

married or partnered (n = 200, 59.3%) than widowed or single without a

partner (n = 137, 40.7%). Most of the women held more than one social role

(n = 237, 67.3%), while less than 3% of the respondents held none of the

three social roles of employee, child care giver, or partner. Other possible

social roles associated with role burden, for instance caregiver of an elder,

were not included in the survey.• .

Incomes generally did not reflect educational level. Overall the sample

women were well educated with the mean number of reported years of

education at 13.2 in the sample (range 7-20 years of education, SD = 2.8

years, SE = .13). Only 16.76% of the women reported having less than a

high school education, with 50.85% reporting at least some college or trade

school training. Sixteen percent of the sample had graduated from college.

One hundred participants reported themselves as the only adult living

in their household. Only 29 of these women lived alone however, with 68 of

the remaining living with one to six children. The mean number of children

living in the house for the sample overall was 1.6 (range 0-12, SD = 1.6).

Although somewhat less than one third of the women were the only

adult living in their household, the others in the sample reported from one to

nine other adults living in their household. Most of these were married

72

couple households, often multi-generational family households, and in a few

cases these were women living in shelters or rehabilitation homes where

large numbers of adults live in community.

The presence of other coexisting health problems was quite common

in this study sample. Respondents were given a problem list and asked to

mark an "X" if the problem applied to them personally. Table 4-2 lists the

percentages of reported comorbid conditions.

Table 4-2

Other Health Problems Reported by Sample Women

Type of Health Problem N Percentage

High Blood Pressure 87 24.7Arthritis/Joint Problem

-

58 16.5Stomach Problem 43 12.2

Nervous Problem 39 11.1

GYN/Female Problem 32 9.1

Lung/Breathing Problem 31 8.8Bladder Problem 26 7.4

Heart Problem 25 7.1

Diabetes/Sugar Problem 22 6.3Back and Neck Problem 10. 2.8

Nineteen of the women reported being currently pregnant (5.4%).

Other serious health problems reported included thyroid problem (n = 4),

liver problems (n = 3), lupus (n = 2), sarcoidosis (n = 2), seizure disorder

(n = 1), HIV-AIDS (n = 1), multiple sclerosis (n = 1), and carotid stenosis

73

(n = 1). In all, 59.4% of the study sample (n = 209) indicated at least one

other chronic health condition, and 31.8% (n = 112) had two or more

Conditions.

Chapter 5 discusses the psychometric performance of both the newly

developed scale and the adopted scales in this survey sample. Reported

observed influences on helpseeking intention are reported in Chapter 6.

***

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74

CHAPTER 5

RESULTS: FOCUS GROUP SESSIONS

AND SURVEY INSTRUMENT DEVELOPMENT

Focus Group Data Phrases - Consensus and Conflict

The focus group data phrase lists, gleaned from the transcriptions of

the focus group sessions, are categorized in this chapter by study variable.

Representative themes emphasized in the development of the survey items

are Summarized.

Triandis Variable Themes

Behavioral Intention

A common assumption embedded in the focus group discussions was

that the decision to helpseek would be obvious and routine. This was true

even for women who indicated a likelihood of ignoring most other health

problems until significant discomfort or disruption of function forced them to

seek a professional examination and treatment. Typical comments about not

seeking care for symptoms were: "I usually just ignore it," and "I just hope it

will go away, even though I'm so educated and everything."

When the symptom was assumed to be specific to breast cancer, most

views could be characterized by one woman's comment "Something like a

lump is different. I go right away for something like a lump." As the

discussions progressed, women occasionally adjusted their estimates of their

75

likely helpseeking behavior. One first said she did not consider a

mastectomy a particularly traumatic surgery because "after all its not like its a

hand or something." Later the same woman said she would likely seek a

diagnosis but probably would not seek conventional treatment; "I would be

inclined to definitely want to know what's wrong...(but) I would have to think

long and hard about whether I wanted to have surgery... I would just go

ahead and try alternative... you know, look to other cultures."

The focus group women's universal expressed intention to helpseek

immediately for breast symptoms was incongruent with both their own past

helpseeking behavior and with estimates of helpseeking in the population."

Since the normative response of immediate helpseeking for cancer symptoms

is well known, concern regarding social desirability response bias led to the

decision to include a measure of social desirability in the developed survey

(Crowne & Marlowe, 1960; 1964; Reynolds, 1982).

Habits of Helpseeking

The women described using home remedies first and seeking a

professional evaluation only when their self care efforts failed. Most agreed

that most health problems could be ignored with few long term

consequences, and described ignoring symptoms that they judged not to be

"An estimated 34% of women are aware of their breast cancer symptoms

for three months or more before helpseeking, and this percentage has been

reported as high as 56% in studies with African American samples (Facione,

1993a; Freeman & Was■ ie, 1989).

76

signs of serious illness. They uniformly held that preventive care was

desirable, but defined it more as a "healthy eat, sleep and exercise regimen"

than in terms of a health screening or education visit to a provider. Doctors

were seen as "providing the answer" when the nature of the illness remained

elusive to the woman herself. Women said, "if something hangs on, then I go

see the doctor," and "If the things that I'm doing are not working, then I need

to go see if something else is wrong."

Affect Related to Breast Symptoms and Cancer

In all of the groups, women spoke of examining and monitoring

changes in their breasts and body, and of how they were often uncertain

about the meanings of some breast symptoms they experienced. Women

were divided as to whether they assumed their behavior would be calm and

deliberate or panicky and disorganized if they should discover a worrisome

change in their breast. They shared stories about helpseeking involving

themselves or their friends and family members. There were many stories of

relatives, friends and distant acquaintances who had delayed their breast

evaluation until their cancers were quite advanced. Many, but not all, of

these stories ended with the death of the woman. Often narrating these

stories of breast cancer illness or biopsy experiences led to revisiting related

expressions of emotion. Fear was the most common affective response

discussed in all of the focus groups. The women described actual or

anticipated fears related to the discovery of a breast lump, experiencing

biopsies or hearing the pathology results. Two of the 22 women told of

77

having a breast biopsy. One woman said, "The first time I felt something, I

just got a sick feeling in my stomach," and the other speculated that some

women might choose possible death over mastectomy, saying that women

might rather "live in fear of having missed a breast cancer than the fear of

going in to actually have a breast removed."

Social Normative Influences

The women envisioned that role expectations might influence some

women's helpseeking. Although some saw their partners and spouses as

involved in the self-discovery of a breast cancer symptom, saying for

example, "I would be very much influenced by my husband and what he was

thinking," others indicated that they would not involve spouses or partners in

such a discovery. An example of this position was, "I think the man I was

married to, I don't think I would have allowed him to share in my decision.

You know,...because of the breast. He would be biased a bit on the whole

thing." Sometimes conflicting normative advice regarding helpseeking was

associated with the roles of employee and mother. Employed women

generally spoke of illness as taboo in the work place. One employed women

told of her habit of talking herself into being well when she was ill. "I say to

myself, 'Now, you know you can't get sick. You are not going to get sick.' I

can do that to myself."

Role obligations of mothers were more ambiguous. Typical of views of

some of the women is the statement "If you don't take care of yourself, how

can you take care of your family!" But others' views could be characterized

78

by the comment "Being female ... society has placed that on us. We take

care of our family. You're not supposed to be taking care of yourself." There

were may testimonials of placing the health care needs of children above

personal health Care needs, both as behaviors of themselves and behavior

they'd seen in their mothers.

Perceived Consequences of Prompt Versus Delayed Helpseeking

All focus group women endorsed the belief that prompt helpseeking for

ºbreast cancer symptoms led to an improved chance of survival. One woman

summed up this knowledge in the statement "The sooner you know º

something is wrong, and the quicker you take care of it, the more likely you

are to survive." Women almost universally described themselves as likely to

be prompt helpseekers for a breast change they thought might be breast

cancer. The consequences of loss of life, work, spouse, and everyday ■

experience permeated much of the discussion.

Facilitating or Constraining Influences on Helpseeking

Economic conditions characterized the comments in this category.

"Going to the doctor, that's...for some people, they can't afford it. It's a

luxury. It's difficult to be sick and poor in America. You're in trouble." The

women were divided, however, on the issue of whether lacking the ability to

pay for a doctor's visit would affect their seeking the evaluation. "Cost

wouldn't keep me from going to the doctor. If I didn't have medical and

knew I had to get (an examination)...I'd go (to the doctor) and worry about it

later," said one woman. Other factors constraining helpseeking were spoken

79

of in these terms: "Transportation to the doctor is a big problem just in the

Black community overall," or "There are problems with the clinics... They

have lesser equipment, and you're going to take what's given."

The preceding discussion has described focus group data in relation

to Triandis model variables. The following discussion is of the focus group

data that led to the addition of several other variables to the study design.

Additional Focus Group Themes

Knowledge of Breast Cancer

Most striking was the unanimous assumption that the symptom

announcing the arrival of breast cancer would be a lump. Many comments

began with the phrase "If I were to find a lump..." This assumption colored all

focus group discussions until the investigator introduced the notion that less

often there may be other initial symptoms. There typically ensued intense

interest on the part of some of the women regarding other possible

presenting symptoms. In two of the focus groups women then offered a

narrative of a breast cancer illness experienced by someone they knew where

the presenting symptom was not a lump.

Other themes related to breast cancer knowledge were: concern for

the safety of mammography, the belief that breast cancer could be reliably

prevented by healthy lifestyle choices, and a belief that mastectomy rather

than lumpectomy would be the surgical option. One young woman (age 20)

offered her understanding that breast cancer is "usually treated by cutting it

:

º

º

80

all off" and demonstrated with a guillotine movement of her hand across her

chest. Other young aged women in the group reacted with a mixture of

disbelief and shock, necessitating information-giving by this investigator

regarding the range of treatment options in relation to stage of disease.

Fatalism in Relation to Breast Cancer

Several of the women expressed fatalistic beliefs regarding the

occurrence of or their eventual survival of breast cancer. They said, "With my

luck, it will affect me," and "If I were to find a lump, I would seriously consider

it a death sentence." Some spoke more indirectly of "people" being fatalistic,

saying, "People have that attitude that you're all going to die of something.

So they just adopt a fatalistic attitude, you know, this is going to be it."

Another said, "People think, 'I've got to die of something so if I just don't

know about it then I won't worry about it."

Religiousness

Intertwined in discussions of fate was mention of God as an active

agent in the experience of illness. One woman said that breast cancer can

come because God "sends it as a lesson." The idea that God determined

one's fate was not a negative expression of powerlessness, but rather one of

faithful trust that God would determine one's fate with compassion or in

keeping with a perhaps unknown but ultimate good. Several women also

expressed that while God's will would ultimately decide one's fate, "that didn't

mean you couldn't go to the doctor to help yourself."

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81

Perceptions of Racism in the Health Care Services Environment

Cultural constraints on helpseeking was spoken of even more directly

in terms of the perceptions of racist treatment by some health care providers

or their staff members. "A lot of Black folks feel that things have been done

on an experimental basis. Folks have gone in (hospital) with some minor

condition and have died...And remember Tuskeegee," exemplifies the,

perhaps not inappropriate, overall distrust in the health care system that was

expressed by several of the focus group women. Although at least one

woman did not think racism was a factor in seeking help for symptoms, the

vast majority related occurrences that effectively diminished their access to

acceptable health care. "If you're Black and you go to the doctor, they think

you're on welfare," and "You don't get the kind of courtesies you deserve,"

exemplify the prejudicial treatment women described as characterizing their

past helpseeking experiences.

In conjunction with this portion of the focus group discussion,

additional comments about characteristics that increase the desirability and

comfort of a visit to a provider, women commented on the gender of the

provider being important to them in relation to discussing breast problems.

Most said that they preferred a female provider and in fact did regularly see aO

female provider.

In response to a question by this investigator regarding a preference

for seeing an African American provider, responses were more mixed. Most

women said that the race of their provider was not important. Other women

82

said that they preferred seeing an African American provider if this choice

was possible, although, they said, it typically was not possible. This lack of

choice was related to their receiving care in a clinic and having to be

attended by which ever provider was available.

Psychometric Performance of the Survey Instrument

Confidence placed on the validity of measure of a given behavioral

scale rests on its adequacy to measure the domain of the construct (content

validity), its ability to predict some external criterion (predictive validity), and

its empirical convergence with other measures of the same or related

constructs and divergence from non-related constructs (construct validity).

Reliability of the measures rests on their consistent performance across

investigations and in relation to each population studied.

Performance of Developed Scales and Measures

In the case of this investigation a number of considerations structured

the configuration of measures of the study variables. Evidence of the validity

and reliability of each of the measures varies as presented in each of the

variable discussions. Table 5-1 displays the number of items included in

each scale, mean scores, the number of usable scores in the survey sample,

an internal consistency reliability coefficient, and the item numbers

referencing each scale in the survey questionnaire for each of the developed

measures. The distribution of scores and decisions for the retention of scale

Table 5 - 1

Characteristics of Developed Scales Calculated from Survey Sample(N = 352)

Scale Name n

|HELP 347

CONSEQ 343

HABIT 348

SOCNORM 347

FATE 342

CONSTRAINT

(overall) 352

The CONSTRAINT Sub-Scales:PARTNERED 236 O6EMPLOYED 241CHILDCARE 223

ACCESS

(overall) 348

The ACCESS Sub-scales:PROV 348

COST 348

CONV 348

FEAR 336

ItemCodes”

11,3,5,7-17

P1-P20 >

H2-5,8-10 :SN1,3,4,6,7 ~

**.

FT1-3,4 * -

---

+ ºr **

SP1-5,7 --E1-4 - .FC1,2,4; ºSR1,3,4 --

* * *

B1,3,4, z---

FA1-10

FA5,6,9,10FA2,3,8;B4FA1,4,7,B1,3

A5,7,9,10,

Items Mean Range S.D. S.E. o. orin Scale

14 11.38 1-14

20 58.25 20–80

O7 18.78 7-28

O5 2.00 0-5

04 0.62 0–4

16 5.61 O-30

0.94 O-604 4.23 O-10O6 1.52 O-6

13 10.10 1-13

04 3.12 0–4

04 3.24 0-4O5 3.76 0–5

12 8.75 1-12

2.94

8.98

3.85

1.52

0.98

2.63

O.16

O.48

O.21

0.08

0.05

0.33

0.08O. 16O. 10

O.15

0.06

0.06O.O7

0.14

KR-20

.83

.79

.81

.63

.61

.76

º

.78

.7O

.61

.76

12-19

* Item Codes correspond to the item code numbers found in the rightmargin on the survey form (Appendix C).

** CONSTRAINT is a weighted composite of the three role status itemgroupings (possible sub-scales) listed below it in the table.

*

items is discussed below for each scale. Scales were studied

psychometrically using interactive statistical software (Crunch4, 1991) with the

capability of performing distributional analyses, factor analytic analyses and

internal consistency estimation.

Missing Data

Three cases were omitted from analysis due to large amounts of

missing data. Two of these also contained scales where all answers were

marked "TRUE/YES" or all "False/No." The third had only one response

marked per page. These surveys were judged to have no possible usable

data. Thirteen other surveys had large amounts of missing data, that is they

were missing entire scales as though the respondent had missed the page.

These surveys were coded as possible and no coding was done for missing

scales. In a limited number of other surveys, an occasional scale (RACISM

and FEAR) was responded to as all "True/Strongly Agree." These surveys

were coded as marked. The rationale for this decision stems from the fact

that items on these scale are framed roughly equally from the positive and

negative perspective. Scores from scales marked in this way were typically in

the mid range of the scale distribution and not particularly influential in data

analyses. This investigator also wished to retain these scales out of respect

for the respondent in the, albeit unlikely, event that these were her actual

responses.

Other missing data were relatively rare in this survey study. Missing

data occurred in the form of a skipped response on any particular scale. If

ae*■

*

85

the scale was coded on a four point Likert "Strongly Agree...."Strongly

Disagree" continuum, missing data was coded 2.4 so as not to influence the

overall agreement or disagreement in relation to the concept being

measured. If the items were dichotomous items scored directionally in

relation to helpseeking intention, then the mean response score per item for

the remaining items was calculated and used to estimate the missing item

score. These estimates were retained as missing data when frequencies of ºresponse for individual items are reported in text and appendices tables. ~.

gº-sº

The IHELP Measure ~The dependent variable, the intention to helpseek for breast cancer :

**

related symptoms (IHELP), was measured by 14 items (See Appendix A,

Table A - 3). Because of the dichotomous scoring of the items, the Kuder- 2.

Richardson (KR-20) coefficient was used to estimate the internal consistency º

of the measure (KR-20 = .83). The items appeared intermittently in the -

survey, beginning in the second half. They were interrupted by the AFFECT

and CONSEQ scales and items assessing breast cancer symptom knowledge

and the existence of comorbid conditions. In the complete survey (See

Appendix C), items 1-5 are followed a page later by items 6-13 (no new

instructions), and item 14 appears as one of the last of the 215 items in the

Survey.

Converse and Presser have described how respondents "bring their

answers to an item into line with what they have said to another item (1986,

p.40). The IHELP items were interspersed throughout the survey to

86

theoretically increase the number of times the respondent would need to

think again about her likely behavior in relation to a breast symptom

discovery.

Responses were coded "True" = 0, "False" = 1, except in the case of

items 2, 6, 9, and 11 which were reverse coded ("False" = 0, "True" = 1). For

item 14, "not sure" = 0. This item was presented in a slightly different format

in the questionnaire and, for the sake of scale symmetry, might better have :

been presented in the format "All things considered I am not sure that I would :have a discovered breast change checked immediately by a doctor" r(True = 0, False = 1). Future investigations might test this adapted form of :

º

the item.

The items measuring IHELP were studied using an interactive internal - -

.*

consistency statistical package (Crunch4, 1991) to assess the scale -dimensions and internal consistency. Two items were eliminated early in the º

analysis because of negative factor loadings and negative effects on the

Kuder-Richardson - 20 reliability coefficient, suggesting that these items may

be inviting ambiguous interpretation. The possibility of shortening the IHELP

measure to ten items was evidenced by several possible groupings of ten

|HELP items achieving KR-20 coefficients of .80 or higher and having factor

loadings above .300. Ultimately, however, it was determined to retain all

fourteen items in the measure of IHELP in this study. All of the fourteen

retained items have high face validity. Elimination of any of these items

would have been relatively arbitrary, and there was no advantage to

*-

87

shortening the IHELP measure when nothing was to be gained in internal

consistency and data collection was already complete.

The KR-20 for the resulting fourteen item IHELP scale was .83 and the

mean homogeneity ratio was .261. Item-Total correlations ranged from .366 -

.589. Table A - 4 (See Appendix A) displays the factor analysis of the

responses to the 14 IHELP items based on 347 non-missing cases. An

oblique rotation was determined as most theoretically appropriate since the º

dimensions of IHELP were not expected to be entirely discrete factors. :An examination of the three retained factors strongly suggests that the ..

items cluster in relation to coping style. Factor 1 items can be seen to have 2.

the Common theme of immediate or aggressive action, action in response to

the appraised threat of the breast symptom discovery. Factor 2 items º

Commonly describe detachment or disassociation, a disengagement from the r

symptom discovery situation. Lastly, Factor 3 items all describe an avowed gº

inaction, the intent to do nothing in response to the symptom discovery,

perhaps a denial of the need to helpseek. Items in each of these clusters

were examined for estimations of their internal consistency as possible future

sub-scales with resulting KR-20 internal consistencies of .78 (Factor 1), .68

(Factor 2), and .67 (Factor 3).

The FEAR Measure

As discussed above, affective influences on helpseeking have proven

particularly enigmatic in prior research. Although women describe fears and

anxiety, as well as an assortment of other emotions as integral to the

ae”■

**

º

s

~~~~

88

experience of discovering a breast cancer symptom, prior studies have failed

to describe individual differences in helpseeking in terms of these emotional

responses. In an attempt to connect fear to various aspects of the symptom

discovery and helpseeking experience, a second measure of affect was

constructed.* The number of data phrases describing emotion in the focus

group facilitated construction of this second measure.”

One item (A11, Appendix C) was judged as too complexly worded and

open to ambiguity of response and dropped from the scale. The resulting

twelve items were dichotomously scored items exploring the objective targets

of the fear response in relation to symptom discovery (eg. surgery, death,

loss of function, worse disease, etc.). The summed score of these twelve

items was used as an indicator of the magnitude of fear (FEAR). A second

measure of affect which spans an array of emotional responses to the self

discovery of a breast symptom was constructed from a modification of an

analog scale by Timko (1984; 1987).

* The second of the affect variable measures (AFFECT) is discussed

below in the section on adopted and modified scale measures.

* Focus group affect data phrases were often strikingly similar to the

qualitative data phrases reported by Timko (1987) and Lauver & Angerame

(1993), supporting their likely generalizability across populations of women.

My framing of additional items was doubtless influenced by knowledge of the

relevant prior work of these researchers.

89

The CONSEQ Measure

Twenty items were used to measure perceptions of consequences

related to the timing of helpseeking [P1-P20, Appendix C]. Respondents

were asked to imagine for a moment that they had just discovered a problem

in their breast. After each CONSEQ item respondents were asked to check

one of four boxes ranging from "Definitely Yes" to "Definitely No" to describe

what they thought would happen if they "waited a while before having the

change in (your) breast examined by a doctor." The score for perceived

consequences (CONSEQ) was derived by summing the scores for all twenty

items. The possible scores for CONSEQ ranged from 20 to 80 and the

median possible score was 50.

All but four of the CONSEQ items were drawn from focus group data

phrases. The remaining four were adopted from Timko's (1984) behavioral

beliefs measure [P1;10-11;17]. These items seemed to capture the spirit of

the focus group and were more succinct at describing these four aspects of

potential consequences than the focus group data phrases. The score for

CONSEQ is the sum of the 20 item responses and was considered to be a

measure of the magnitude of the possible consequences that might arise as

a result of "waiting awhile."

Notable was the degree to which many of the focus group data

phrases echoed those reported by Timko (1987) in her study of the intention

to helpseek for a presumed breast lump, and those in the qualitative study of

helpseeking intention by Lauver & Angerame's (1993). This suggests that the

----***

90

domain of consequential beliefs relative to helpseeking for breast cancer has

been well enumerated in the literature.

The HABIT Measure

Respondents were given 4-point Likert style items with choices ranging

from "Strongly Agree" to "Strongly Disagree." Scores for HABIT were derived

by summing the seven items, with possible scores for HABIT ranging from 7

to 28. Twelve items to measure the habit of helpseeking for health related

problems were deved rom focus group data phrases. Seven of these items

were determined to be the most internally consistent measure of HABIT [H2

5,8–10]. There are four positive frames describing regular, routine

helpseeking, and three negative frames ("only when it's serious," "I really have

to be hurting," and "I usually ignore my sickness..."). Responses are on a

four point Likert with anchors from "Strongly Agree" to "Strongly Disagree."

The Social Influence Measures

SOCNORM. The Triandis variable of Social Factors was divided into

two conceptual parts for measurement. The first was social normative

influences (SOCNORM) on helpseeking intention. Although some ambiguity

existed and was described by focus group women regarding whether its wise

to place trust in a health care provider, the normative belief is that a women

who believes she may have a breast cancer symptom should best have it

evaluated immediately by a provider. But the idea that the social normative

response will influence the performance of a behavior includes the

consideration of how public versus private the performance of the behavior

···:

91

might be. The discovery of a breast symptom is a private rather than public

event. Social norms may be less influential in the case of helpseeking for

discovery of a breast symptom than, for instance, helpseeking for engine

trouble in the fast lane of the freeway.

The items constructed for the SOCNORM Scale differ from the classic

expectancy-value format where one is asked what normative behavior one

expected each of one's key social contacts to avow, and second be asked

how likely one would be to value this directive. The scale then resembles a

check list of persons' expected normative directives and one's valuing of the

directives. Scoring is done by multiplying expectancies and values and

summing the items. Problems arise when expected norms are either not

known or not valued. In the case of this investigation, problems arose more

fundamentally in that the focus group women found prototypes of this

measure displeasingly repetitive, frustrating to complete, and/or construed the

question framing as insulting to their intellect. For these reasons, it was

decided to abandon the classical expectancy-value construction and to again

use the method of constructing items from focus group data phrases,

emphasizing the social versus private nature of behavioral responses in

relation to the symptom discovery.

Seven items were initially included in the survey. Two were eliminated

to improve internal consistency of the measure. The remaining five items

were retained as a measure of social factors influencing helpseeking

[SN1,3,4,6,7, Appendix C] preceded by the instructions: "How would the

º

:

ºr.

º

92

people in your life be important if you thought you might have a problem in

one of your breasts?" Each item was dichotomously scored, asking the

respondent to circle "True" or "False." The five items were summed to derive

a possible SOCNORM score of 0 to 5, with 0 corresponding to lower social

normative influence and 5 corresponding to higher social normative influence.

CONSTRAINT. Another theoretical dimension of social factors in the

Triandis Model is one's role expectations in relation to the behavior. In the

context of female roles it was decided to explore this variable in terms of the

frequently held roles of: spouse or partner, employee, or one responsible for

taking care of children living in the home. The descriptor "mother" was not

the operational definition used as it was too narrow to include grandmothers,

sisters, aunts and other women who were assuming the role of caring for

children in the home.

Items were constructed to address possible perceived constraints on

helpseeking associated with each of these roles. Separate items ascertained

the women's status regarding which roles they held. Only those currently

holding roles were asked to complete items about role related constraint on

helpseeking. Six of the eight items developed for the childcare section were

retained as the measure of CHILDCARE, six of the seven spouse or partner

items retained to measure PARTNERED, and all four of the items constructed

to measure EMPLOYED.

To create an overall role related constraint on helpseeking score

(CONSTRAINT), first the four EMPLOYED items (E1-E4, Appendix C] were

——————

•,■

~~~~.

93

dichotomized to reduce them to the same level of measurement as the items

measuring CHILDCARE [FC1,FC2,FC4; SR1,SR3,SR4] and PARTNERED

[SP1-SP5,SP7]. The three scores were then standardized so each

contributed equal amounts to the CONSTRAINT measure. CONSTRAINT was

calculated by adding together the standardized scores for each of the roles

the women held. Scores of "0" were given to women for each role she did

not hold, assuming she would not experience any role related constraint on

helpseeking associated with that role. The following formula was used to

allow a possible 12 point contribution from each of the three components of

CONSTRAINT:

CONSTRAINT = (PARTNERED “2) + (CHILDCARE * 2) + (EMPLOYED “ 3)

The resulting measure of perceived role related constraint on

helpseeking intention was skewed to the right with most women reporting low

levels of constraints on helpseeking related to the roles held. The estimate of

internal consistency coefficient of .76 (KR-20) was computed by analyzing the

responses for all 16 CONSTRAINT items. For this analyses, only the

responses of women who held all three roles were available for analysis (n =

123) as only they had responded to all 16 of the CONSTRAINT items.

The ACCESS Measure

The items measuring access to health care services combined four

items suggested by Berkanovic et al., (1982) with ten additional items

developed from focus group data phrases. The decision to combine these

item groupings was empirically supported by significant correlation (r. = .52,

º

94

p <.01) between the Berkanovic items and the focus group items, and by an

overall KR-20 internal consistency coefficient of .76 for the 14 items.

Access to health care services (ACCESS) was measured with these 14

dichotomously scored items, with item responses associated with lack of

access scored "0" and those indicating access to services scored "1." The

possible range of scores on the scale was therefore 0 through 14, with a-----

score of "0" theoretically reporting lowest access to services and a score of º

"14" reporting highest access. £º-

A factor analysis of these items provided an added insight to the …components of access being addressed by the scale. The analysis resulted :-in retention of three factors, grouping the items into three categories that ******

corresponded to theoretical aspects of access: Factor 1 contained items *::::referring to the strength of the patient provider relationship (PROV), Factor 2 ‘.…

-

grouped items related to the cost of services (COST), and Factor 3 to the -->º

convenience of services (CONV). One item, B2, (See Appendix C) was

eliminated because it did not load as expected primarily on the CONV sub- º

scale. Eliminating this item also raised the KR-20 for the overall ACCESS

measure to .78. Table A - 4 (See Appendix A) displays the factor analysis

results for the overall measure of ACCESS as well as the KR-20 internal

reliability coefficients for the sub-scale measures of COST, PROV, and CONV.

Kuder-Richardson reliability coefficients are high for the sub-scales,

particularly in consideration of their short length and dichotomous scoring.

The shortness of the sub-scales will prove an advantage for minimizing

95

responder burden should the validity and reliability of these sub-scales hold

up under replication.

The FATE Measure

Since no measure of fatalistic beliefs was identified from the literature,

it was decided to explore using the Chance scale (Form B) of the Wallston,

Wallston, & DeVellis (1978) Multidimensional Health Locus of Control Scales

(MHLC). The MHLC scales were developed for use in studies of expected

behavior and as such offered promise in a study of intended helpseeking

behavior. Since the Chance scale is not a measure of fatalism, but rather a

measure of external chance, several items developed from the focus group

data phrases to measure fatalism in relation to breast cancer were also

included in the survey.

Analysis of the data for this group of items did not, however, strongly

support an advantage of combining focus group fatalism items with the

Chance MHLC items. The focus group fatalism items correlated well with the

Chance MHLC items (r = .39, p <.01), offering support for the convergent

validity of these two close constructs. Factor analysis suggests that the four

focus group items are a separate dimension from the MHLC Chance items.

Also the a reliability of the Chance scale alone in this sample was .58, (lower

than the internal consistency of .67-77 reported by Wallston, et al.), while

the focus group fatalism items achieved an a of .61. Combining the MHLC

Chance items and the focus group items achieves only an a coefficient of

.68, not a remarkable improvement.

*-

*

r

* *

-

w

----■ ~~~~■ ~~~~~~…•

•··

96

In light of these analyses it was determined to retain only the four

focus group generated items as the measure of FATE particularly as this

achieved a measure specific to breast cancer. These four items are coded

FT1 - FT4 in the survey (Appendix C). The FATE score was computed by

summing the four items, and the scores ranged from 0 (less fatalistic) through

4 (more fatalistic).

Knowledge of Symptom Presentations: (TYPE)

One influence on the intention to helpseek might be the interpretation

of the breast change itself, as requiring or not requiring a provider evaluation.

This aspect of helpseeking behavior is often approached in terms of

'knowledge measures' (EVAXX, 1980; Champion, 1991), and in this study was

approached in terms of knowledge of the possible presenting symptoms of

breast cancer. The literature has reported that women evaluate breast lumps

as needing provider examination more quickly than other breast cancer

related symptoms. In order to explore potential differences in helpseeking

intention by symptom type, the women in this sample were provided with a

list of breast symptoms all of which can be symptoms of breast cancer (See

Appendix C, Items Y1 - Y14). The women were asked to respond "Yes" or

"No" to the following: "Here is a list of possible changes you might notice in

your breast. Which of the changes would make you decide to get your

breast checked right away by a doctor or nurse?" "Yes" responses were

scores as '1' and "No" responses '0'. Frequencies of "Yes" and "No"

responses were tabulated.

97

Potential measurement problems were observed to occur in relation to

this method of measuring symptom knowledge. Clarification questions asked

of the research assistants indicated that at least some of the women thought

the listing was a symptom checklist asking about symptoms they might be

currently experiencing. Although the instructions to this portion of the survey

appear to be clear and concise, many of the women (n = 51, 14.5%)

responded "No" to every symptom presentation, a response that is

inconsistent with the overall high intention to helpseek in the sample. The

reason why respondents may have misinterpreted the instructions was not

readily apparent. If this were the case, however, then the percentage

estimates of helpseeking for each symptom might be underestimates of

actual symptom specific helpseeking intention.

On the other hand, 36.6% (n = 101) of the women responded

affirmatively to all of the symptom descriptions. This response may reflect

actual helpseeking intention, but there is a concern that listing the symptom

presentations may have resulted in an inflated estimate of women's overall

knowledge of breast cancer symptoms. A measure of helpseeking intention

in relation to the array of possible breast cancer symptoms, one that does not

cue the respondent yet extracts a full description of the respondents'

knowledge, remains for future investigations.

Limitations of the TYPE Measure. This scale development portion of

the study was necessary to begin the process of achieving culturally reliable

and valid measures of the variables studied. The completion of this sizable

***

*...*****, sew"*******

a. **** * * * *

*_***

* *-* **** * * *

****

*-

98

survey questionnaire with minimal missing data was also of key importance to

provide adequate power for psychometric evaluation of the scales. That this

was achievable suggests that the responder burden was not excessive for the

entire survey instrument. The evidence for the content validity of these

measures rests at this time on the strength of the collaborative focus group

process and on support from qualitative investigations in the literature. All

developed scales attained reliability coefficients of adequate magnitude for

placing initial confidence in them as consistent measures. Further evidence

for the validity and reliability of all the newly developed measures must await

repeated investigations.

The remainder of the analyses in this investigation will use the newly

developed independent variable measures to study differences in helpseeking

intention as measured by the newly developed IHELP scale. These findings

will await replication in an independent and randomly selected sample of

African American women, building on these first efforts at culturally relevant

measurement scales to advance the strength of each.

Performance of Adopted or Modified Scales

Several scales developed by other investigators were used as

independent measures or as measures to assess the validity of developed

scales. The distributions of scores on these measures in the survey sample

are displayed in Table 5-2.

****

*...***- *

º*... -º

rºsa-- *

----

re

º

-

-

99

Table 5-2

Adopted or Modified Scales Psychometric Characteristics

Author Scale Name n Items Mean Range SD SE a■ kR-20

Strayhorn, RELIG 352 12 42.16 13-6O 9.70 0.52 .90

Weideman & Larson (1990)

Green, RACISM 351 12 29.68 13-48 5.55 0.30 .82 * *

(1991) º

Timko AFFECT 314 14 60.37 O-112 22.91 1.29 .87 º:(1984- Modified from affective adjective list) º

Crowne & CM-SD 349 13 8.1 1 1-13 2.82 0.15 .68 ..Marlowe (1960) º

Krantz, HOS 347 9 5.95 0-9 2.21 O. 12 .69

Baum & Wideman, 1980) *

Wallston, CHLC 350 6 2.44 0–6 1.61 0.09 .58 …”Wallston & Devellis (1978)

The Religiousness Measure: RELIG

A revision of Kauffman's (1979) Religiousness scale (Strayhorn, et al.,

1990) was adopted without revision to measure religiousness in this study

sample. The measure contains twelve items, each scored as a possible 5

points. The range of scores is from 12 which represents choices

corresponding to "less religious" on each of the twelve items, to 60 which

represents choices corresponding to "more religious." The median possible

score on the instrument is 36.

*

**

1OO

The reliability coefficient of .90 observed in this study sample was

somewhat higher than the .88 reported by Strayhorn and colleagues. Their

description of a two factor scale containing intrinsic and extrinsic descriptors

of religiousness was also observed in this sample, with the exception that

three of the items loaded on the opposite factor from that reported by

Strayhorn and colleagues.****

The RACISM Measure •. --*~~~

Perceptions of racism were measured with Green's (1991) "Perceptions º: --->* - -

Related to Racism and Health and/or Health Care" sub-scale. Green's scale …-* * *

items were constructed from statements reported in qualitative studies of ----.

African American women's pregnancy and health care experiences. Green'se

scale was minimally modified for this study by removing references to ---.* ~ *

pregnancy. The addition of two additional focus group items to the scale ---increased the Chronbach's a reliability coefficient from .80 to .82. These ~~

additional items were added more to assure that all important content from

the focus group data phrases were included in the survey. Ultimately it was

decided to retain the entire twelve items as the measure of RACISM, although

this combined scale can be reduced to eight items and still achieve a

Chronbach's a reliability of .80. Such a reduction might be advisable for

future study to reduce responder burden.

-

Response choices ranged from "Strongly Agree" to "Strongly Disagree"

in a 4-point Likert format. The lowest possible score on the scale was 12

~_^

101

signifying lowest perceptions of racism, and the highest score a 48 signifying

the highest perception of racism.

The AFFECT Measure

Achieving a better understanding of affective response to discovery of

a breast symptom was an important focus of this study since other

investigations have failed to explain how affect and helpseeking interact.

Measures of affective response to the discovery of a breast change were

limited to Timko's measure which coupled affective terms (eg. pessimistic and

hopeless, fearful and apprehensive, surprised and curious, etc.) and asked

respondents to mark whether they might feel the emotion on a seven point

continuum from "Extremely" to "Not at all." It was decided to include a

measure of affect similar to Timko's as a way of assessing total affective state

and as a way to explore differences between differing affective descriptors."

Because coupled prompts are to be avoided if possible since

respondents might relate differently to each of the two components (Converse

& Presser, 1986), fourteen of the affective terms included in the Timko scale

were separated into single affect items and converted to analog scales

anchored with "Extremely" and "Not at all."

Women were asked: Imagine for a moment that you are bathing and

you notice that there is a definite change in one of your breasts. "Discovering

“Although this measure is not, strictly speaking, an adopted measure, it is

discussed here because of its strong influence on the measure constructed

for this study.

--

aea

…--

102

the change in my breast would make me feel:" The word "change" was used

rather than "lump" or "problem" or "trouble" to minimally prejudice the

interpretation of the breast symptom to which this scenario was alluding.

These instructions were followed by the analog measures of the fourteen

affective terms. The analog scales were scored along an 8.00 centimeter

continuum [Items T1-T14, Appendix C]. A total level of affect score (AFFECT)

was calculated by summing the values on the 14 items. The possible range

of the score for AFFECT was 0 to 112, the mid-point on this scale being 56.

The distribution of this scale measure was normal (SW test of Normality

= .96, p <.01) in the survey sample. Cronbach's a was quite high (.87) for a

scale which is clearly measuring a multi-dimensional construct.

The Health Opinion Survey (HOS)

Since the Behavioral Involvement Scale of Krantz's Health Opinion

Survey (HOS-H) has been described as being predictive of "being a clinic

user" (Krantz, et al., 1980; Dinning & Crampton, 1989), it was decided to

include this measure in the survey as a test of the convergent validity of the

developed HABIT scale. Focus group women found the items

comprehensible and culturally acceptable. Scores on the HOS-H scale were

significantly correlated with those on the HABIT scale (r = .25, p <.03) as

hypothesized, offering concurrent validity support for the newly developed

HABIT Scale.

****

...**********

r. --"

e-+==

~|~~~

■

103

The Crowne-Marlowe Measure (CM-SD)

The Reynolds (1982) short form of the Crowne-Marlowe Social

Desirability Scale (1960) was judged acceptable for inclusion in the survey by

the focus group participants. This was of particular importance to this

investigator because the possibility of alienating the survey women by the

inclusion of items that could be perceived as reflecting negatively on oneself.

Concern that these items might appear to survey participants as disjointed

from the health related focus of the remainder of the survey were also not

realized. This scale performed moderately well in the study sample,

achieving a Chronbach's a reliability of .68. The mean score of 8.11 was

notably higher than that reported for Reynolds' undergraduate students

(M = 5.67, SD = 3.20). This difference in means may be attributable to

cultural differences in the samples or actual differences in social desirability

response bias between groups.

104

CHAPTER 6

RESULTS: SURVEY OF HELPSEEKING INTENTION

Helpseeking Intention (IHELP)

Overall the women in the sample had the expectancy of immediate

helpseeking for a self-discovered breast cancer symptom. The possible

range of scores for the IHELP measure was 0 to 14 with 0 representing

choices intending against helpseeking on all 14 items and 14 representing

choices intending toward helpseeking on all 14 items. Scores for IHELP in

the survey sample ranged from 1 to 14, (M = 11.38, SD = 2.94, SE = 0.16).

Since the majority of women with breast cancer have been reported to

seek immediate provider evaluation for their self-discovered breast cancer

symptoms, usually within a month (Richardson, et al. 1992; Samet, et.al,

1988), a skewed distribution in the direction of higher intention to helpseek

was anticipated for the IHELP measure. In fact, a highly skewed distribution

for IHELP was observed in the survey sample. Less than 8% of the women in

the sample were generally disposed against helpseeking for a self-discovered

breast symptom, (that is, responded against helpseeking on at least half of

the IHELP items).

The overall correlation between the Crowne-Marlowe CM-SD measure

and the measure of IHELP was r = 0.18, p <.01, suggesting that social

desirability response bias may have accounted for as little as 3.4% of the

variance in the IHELP measure. That a significant correlation was observed

i

105

between IHELP scores and scores on the social desirability measure is not

surprising given that immediate helpseeking for a suspected cancer symptom

is the normative response and one might expect a self report measure to be

somewhat biased in the direction of the normative behavior.

The Relationship of IHELP to Current Symptomatology

The performance of the IHELP measure was further explored in relation****

women's descriptions of their current symptomatology. More than one third º

of the sample (n = 122, 34.7%) responded positively to the item "I have a r:change in my breast right now that sometimes worries me." As the º:proportion of women currently monitoring a possible breast symptom has not --.been reported in the literature, the large size of this sub-group was not *****

anticipated. For the purposes of these analyses, these women will be º-:referred to as "symptomatic," and compared with those who indicated no ºcurrent awareness of changes in their breast, "asymptomatic." The term Tº

"symptomatic" applies only to the self-report of a breast change in that no

assessment of women's symptoms was carried out in this survey study. This

context was judged to be the most authentic for a study of helpseeking

intention, given that self-description of "having a change in the breast that

worries me" is the context in which the decision to helpseek must be made.

Symptomatic women had lower scores on the IHELP measure

(M = 10.03, SD = 3.27, SE = 0.30, n = 122) as compared to asymptomatic

women (M = 12.17, SD = 2.39, SE = 0.16, n = 221). This difference in

scores was significant by t-test, t|(193) = - 6.35, p < .01. Figure 6-1 provides

106

a visual display of the differences in the distribution of IHELP in these two

groups. Social desirability response bias was observed to differ significantly

in relation to IHELP scores. The IHELP scores of symptomatic women were

independent of the CM-SD scores (r. = 0.06, p <.49) although IHELP was

minimally correlated with the CM-SD in the asymptomatic group (r. = 0.26,

p <.01) explaining potentially 6.7% of the variance in this group's IHELP

SCOre.

1OO------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

1 2 3 4 5 6 7 8 9 10 1 1 12 13 14

Symptomatic . . . . . |HELP ScoreAsymptomatic .

Figure 6-1Frequencies of IHELP Scores in Symptomatic and Asymptomatic Women

107

Women who indicated that they were currently monitoring a breast

change that worried them were asked additional exploratory questions about

their behavior in relation to that breast change. The frequencies of these

responses are recorded in Table A - 6 (See Appendix A).

Descriptions of the symptom as something other than a lump in the

majority of these women (59.8%) could be interpreted as signifying that the

breast changes concerning the women were relatively benign or even normal

fluctuations in breast tissue. Breast symptoms, however, were of relatively

frequent concern to the women in the sample. Slightly more than half

(50.8%) were concerned enough about their breast changes to consult a

provider, and a third (33.9%) of these breast changes were biopsied.

In spite of the fact that breast changes are most often benign, there

was a strong concern in the symptomatic women that the breast change they

were experiencing might be cancer. Of the 62 women who had had their

breast changes evaluated by a doctor or a nurse provider, 21 women (33.9%)

were still concerned that the change might be breast cancer. In fact nine

(42.9%) of the 21 women who had had a biopsy for the breast change were

still concerned that the change might be cancer.

Relationships between Helpseeking Intention and Sample Demographics

Age and Helpseeking Intention

Age was significantly related to the intention to helpseek measure with

younger women indicating lower helpseeking intention than older women (r. =

108

0.26, p <.01). Because women over age 60 were under-represented in this

sample, an extrapolated relationship of higher helpseeking intention cannot

be generalized to this group of women as a curvilinear effect for age has not

been tested with this sample selection.

Income and Helpseeking Intention

There was a direct and positive correlation between the IHELP score

and reported family income. An analysis of variance by family income

showed significantly lower IHELP scores in women with reported family

incomes at or below $9,999 when compared to women reporting family

income at $40,000 or higher, F(6,314) = 8.17, p <.01.

Partnership Status and Helpseeking Intention

An analysis of variance showed significant differences in the IHELP

measure by partnered status, F(3,331) = 6.70, p <.01. By Scheffé post hoc

analyses, there was no significant difference in IHELP score between

currently married women (M = 12.19) and women who were widowed

(M = 12.86). Both of these groups were significantly higher in helpseeking

intention than single women whether partnered (M = 10.84, p <.01) or

unpartnered (M = 10.93, p<.01). This finding echoes other studies reporting

women with spouses less likely to delay helpseeking (Lierman, 1988; Dodd,

et al., 1992).

In order to attempt to separate age and partnership role effects, an

analysis of the variance in age among partnership groups were examined. It

was observed that married or widowed women were significantly older overall

109

(M = 43.3 years of age, SD = 11.8) than the single women (M = 35.5 years

of age, SD = 11.3) (t = 5.99, p <.01). However, single women with partners

were not significantly different in age from married women. These

observations suggest that it is partnership status rather than age that is

related to the lower helpseeking intention in single women with partners.

Responsibility for Childcare and Helpseeking Intention

Being responsible for childcare was dichotomously modeled

(YESCHILD = "1") for the following analyses. Women who reported

themselves as responsible for childcare scored significantly lower on the

|HELP measure (t = 12.92, p <.01) than those with no childcare

responsibilities. There were no age related effects in the significantly lower

helpseeking intention observed in women with childcare responsibilities

(t = - 1.97, p <.01). The number of children living in the household was not

significantly related to helpseeking intention (r. = - 0.11, p <.08), nor was

there an observed relationship between the number of adults living in the

household and helpseeking intention (r. = - 0.10, p <.17).

Employment Status and Helpseeking Intention

Nearly half (48.58%) of the sample women were currently employed

outside the home, and more than two thirds (71.02%) reported that they

customarily worked outside the home. An analysis of variance in helpseeking

intention by employment status showed that the sample women currently

working outside the home scored significantly higher in helpseeking intention

than women who reported themselves as usually not working outside the

110

home, F(2,330) = 7.320, Scheffé p <.01. An examination of age in relation to

employment groups showed that there was no significance in age between

the employment groups, (F(3,322) = 2.176, p <.115), thus there are no

confounding age effects in this observed relationship between holding the

role of employee and higher helpseeking intention.

Social Behavioral Measures of Helpseeking Intention

Knowledge of Breast Cancer Symptom Presentation

Overall, sample women indicated moderate helpseeking intention for

the majority of listed breast symptoms [See Items Y1-Y14, Appendix C]. The

symptoms most frequently indicated as cues to helpseeking were: "a new

lump I never had before" (n = 238, 67.6%), "a lump I knew I had in my breast

getting bigger" (n = 243, 69.0%), "a little blood coming from my nipple" (n =

236, 67.0%), and "constant pain in my breast" (n = 238, 67.6%). "Persistent

itching in my breast" (n=165, 46.9%), "clear drainage from my nipple" (n =

197, 56.0%), "a dimpling in the skin of one of my breasts" (n = 197, 56.0%),

and "one of my nipples beginning to sink inward" (n = 205, 58.2%) were least

selected as likely to motivate helpseeking.

Religiousness and Helpseeking Intention

The women in the survey sample described themselves as religious

overall, scoring from 13 to 60 (M = 42.16, SD = 9.70) on the religiousness

measure. This observation supports the accepted belief of the prevalence of

religiousness in the African American community (Chatters, Levin, & Taylor,

1992; Gallop, 1984). Religiousness and age were correlated in the sample

111

(r. = 0.36, p <.01) with older women describing themselves as more religious.

Religiousness and helpseeking were also observed to be minimally related

overall (r. = 0.22, p <.01), explaining potentially 4.9% of the variance in the

|HELP measure.

Access to Services and Helpseeking Intention

It was expected that women would describe lack of access to health

care services in general as a result of the documented lack of access in lower

income and particularly in African American populations (Blendon, et al.,

1989; Merrill, 1991; Steiner, 1991; McCoy, et al., 1991), and in light of the

general consensus of the focus group women that access to services is a

pervasive problem in the African American community.

Scores on the ACCESS scale were somewhat of a surprise as a result

of this expectation (range = 1 to 13, M = 10.10, SD = 2.78). This negative

skewing of the ACCESS measure (skewness = - 0.95) might be indicative of

the fact that lack of access has been overstated in other investigations, but

other explanations might be more likely. Possibly it is the case that this

sample, being recruited in community organizations, has an over

representation of women who are able to access all types of services

including health care services. Similarly, the geographic location of the

sample in a metropolitan area should increase relative access to services in

comparison to women residing in more remote geographic areas. If this is

the case then the measure of ACCESS in this study sample may be over

estimate of ACCESS in the larger population of African American women.

112

In this study ACCESS was the variable chosen to operationalize the

Triandis model variable Facilitating Conditions. In accordance with the

Triandis model, those persons with lack of access to health care services

should be observed to helpseek less often. If intention formation is indeed a

non-linear process and knowledge of lack of access enters into one's

intention formation, then lack of access might also be expected to influence

one's helpseeking intention. In the current study, helpseeking intention as

measured by IHELP was significantly and strongly related to the overall

ACCESS measure (r = 0.46, p <.01). This supports the hypothesis that

reported perceptions of access to services influences helpseeking intention.

This observed relationship is reported in terms of perceptions of access

because the sample women's actual access to services was not directly

assessed. This indirect measure of access is more appropriate in examining

decision-making in relation to helpseeking, however, because it is one's

perceptions and beliefs of the situational context that influence one's

decisions, not the external, objective reality of the context.

Sub-scales of the ACCESS measure. As described in Chapter 5, the

factor analysis of the overall ACCESS scale (Table A - 5) provided three sub

scales corresponding to aspects of access that have been hypothesized to

influence the utilization of health care services (Hongvivitana, 1984). These

three sub-scales were: the patient provider relationship (PROV), concern with

the cost of care (COST), and the convenience of utilizing the services

(CONV). All three of the sub-scale measures were significantly correlated

113

with the IHELP measure (PROV r =.27, p <.01; COST r = 0.36, p <.01;

CONV r = 0.43, p <.01). A regression analysis (See Table 6-1) suggests that

concern for cost of services and convenience (or in this case inconvenience)

of accessing the services are the most predictive of helpseeking intention,

explaining 30% of the variance in the IHELP measure.

Table 6-1 :Regression Analysis of ACCESS Sub-Scales on Helpseeking Intention !-

iMultiple R 0.5490 Analysis of Variance ºf a

R-Square O.3014 Source Clf SS MSS F P sº

Standard Error 4.6129 Regression 3 311 1 1 037 48.74 .001

Residual 339 7213 21 !.,”

Variables in the Model B SE E p ***

CONV 1.775 0.21 74.406 O.OOO r

COST 1.044 0.24 18,497 0.000

Variables Removed F-to-Enter p

PROV 0.343 O.558

Perceptions of Racism and Helpseeking Intention

The RACISM scores for the sample ranged from 13 to 48 and were

normally distributed. The mean score for the sample was 29.67 (SD = 5.55,

SE = 0.30), a mean very close to the median possible score for the scale

(median = 30). The sample was divided on whether African American

114

women experienced racist treatment in the health care system. The Green

(1991) scale is not a personal report scale. Women respond regarding what

they think "Black women experience" rather than regarding what they

themselves experience, or how they have perceived their own previous health

care encounters. As such it is a somewhat more indirect measure of

personal perceptions than other variable measures in the study.

In the focus group discussions the hypothesis was raised that lower

income women experience more racism in the health care system than higher

income women. This hypothesis was tested in the survey sample but no

significant difference in RACISM scores by family income was observed,

F(6,318) = 0.94, p <.46). The median of score on RACISM and the normal

distribution of these scores indicate that half of the sample women perceived

at least some degree of racism in the health care system. There was no

significant relationship observed between perceptions of racism in the health

care system and helpseeking intention (r. = -0.07, p <.18).

The Habit of Helpseeking and Helpseeking Intention

The HABIT measure was normally distributed with a range of 7 to 28

and a mean score of 18.78 (SW Test of Normally - 0.97, p <.01). Higher

HABIT scores were significantly related to higher helpseeking intention in the

survey sample (r = 0.39, p <.01), supporting the hypothesis that having the

habit of helpseeking for more general illness problems would influence one's

intention to helpseek for the specific problem of a breast symptom.

****

115

Women in the focus group discussions proposed a relationship

between perceptions of racism in the health care system and general

helpseeking habits. It was hypothesized that higher perceptions of racism

would result in more reluctance to utilize health care services and therefore a

lower score on the HABIT scale. This hypothesis was not supported in the

study sample; RACISM scores were not related to HABIT scores at or beyond

the .05 level of probability (r = - 0.10, p <.13).

Affect and Helpseeking Intention

Table 6-2 displays the means and distributions for each of the affective

terms and for the total level of affect (AFFECT) anticipated in relation to a

breast symptom discovery. Each of the individual affective terms showed a

non-normal distribution, that is, women tended to mark their responses near

one or the other of the anchors "Extremely" or "Not at all." The scores

spanned the range of possible scores (0.0 to 8.0) for each of the items.

Mean scores above 4.0 indicated that the women on average expected that

they would experience the particular affective response in the event of

discovering a change in their breast, and those below 4.0 indicating that they

would not likely experience the emotion.

116

Table 6-2

Anticipated Affect in Relation to the Discovery of a Breast Symptom

Affect item Mean Median SD SE

Angry 2.91 1.55 2.96 .16Surprised 5.47 6.93 2.37 .13Annoyed 3.52 3.35 3.12 .17Embarrassed 1.64 O.55 2.37 .13

Ashamed 1.61 O.60 2.36 .13

Panicky 4.77 5.79 3.04 .16Afraid 5.46 6.89 2.76 .15Shocked 4.81 5.93 2.99 .16

Anxious 4.67 5.95 3.11 .17Worried 5.87 7.20 2.53 . 13

Hopeless 1.90 O.7O 2.49 .13Sad 3.90 3.90 3.10 .17

Concerned 6.43 7.40 2.27 . 12

Depressed 3.84 3.90 3.01 .16Total Affect 56.82 60.51 24.99 135

Note: n = 344, Missing cases = 8

The affective term most often selected as likely to be experienced was

"Concern." The median response of 7.40 is an indication of how many of the

sample believed that they would experience extreme or near extreme

concern, and how few of the women anticipated being "Not at all concerned."

Other terms describing expected high levels of affect were "Surprise," "Fear,"

and "Worry," while "Panicky," "Anxious," and "Shocked" were nearly as often

identified.

117

Women were least likely to expect affect described as "Embarrassed,"

"Ashamed," or "Hopeless." Median scores on all three of these affective

responses were below 1.0, indicating that half of the respondents marked the

analog scale near the anchor reading "Not at all" for these affective

descriptors.

Overall affect (AFFECT), calculated by summing the analog scale

scores, was not related to the IHELP measure in the survey sample sº

(r. = -0.02, p <.79). Other investigators have hypothesized that an equivocal **

relationship between affect and actual helpseeking might indicate that strong

affect is as likely to motivate women to helpseek for a discovered symptom

as it is to paralyze their active response to the threat of a discovered

symptom. The scatterplot of the IHELP and AFFECT measures was *

examined for evidence of the curvilinear relationship proposed by Antonovsky

and Hartman (1974) to exist between these two variables, but no such-

curvilinear relationship was observed.

Examination of each varied affective response in relation to IHELP

resulted in weak correlations between high anticipation of two of the emotions

and the IHELP measure. Women who reported they would be angry

(r = - 0.12, p <.03) or feel ashamed (r = - 0.10, p <.06) scored lower on the

|HELP measure. Reports of likely lack of concern was also correlated with

low helpseeking scores (r. = 0.16, p <.01).

Other support for this significant relationship between the emotions

anger and shame and decreased helpseeking intention was seen in the

118

scoring of several additional items measuring the expectation of these two

emotional responses (See items A1, A2 in Appendix C, Survey

Questionnaire). In order to explore affect as fully as possible in relation to

helpseeking, additional affect items derived from focus group data phrases

addressing anger, embarrassment, shame, depression, and fear were

included in the survey questionnaire. As single item measures they have

limited reliability and can be regarded only as exploratory, but they are

presented here because of their congruence with the above analog scale

findings, adding support for the observation that certain emotions may have

more influence on the timing of helpseeking than others.

The item measuring anger asked women to indicate how they thought

they would feel if they discovered a problem in one of their breasts ("True" or

"False"): "I would feel mostly angry that this had happened to me." Women

who responded "True" scored significantly lower on the IHELP scale

(t = -3.59, p <.01). Similarly women who responded "True" to the statement:

"I would feel ashamed that I did something to make the breast problem

happen" scored significantly lower on the IHELP measure (t = - 6.52, p<.01).

Fear and Helpseeking Intention-

The FEAR scale used 12 Likert-style items to examine fear in relation to

different aspects of the symptom discovery, diagnosis and treatment

experience. There was no observed relationship between the overall FEAR

score (range = 1 to 12, M = 8.75, SD = 2.63) and the IHELP measure

(r = 0.09, p <.12). This result is similar to the non-significant or somewhat

se

twº-"

*** *

.*

* * * *

****

- *gas-- *

-----

!---

****

119

ambiguous findings of other investigators who have tried to study the

relationship between fear and helpseeking behavior (Antonovsky & Hartman,

1974; Magarey, et al., 1977, Mor, et al., 1990).

In an attempt to further illuminate the theoretical relationship between

fear and the timing of helpseeking, an examination of individual items relating

to fear was carried out. One high fear item (A15, See Appendix C] was

associated with significantly lower helpseeking intention scores: "I would

mostly be afraid of the pain I might experience" (t = - 3.35, p <.01). Two

high fear items [La3, A14] were associated with significantly higher

helpseeking scores: "I would be afraid I might lose my breast" (t = 2.26,

p <.03), and " would be afraid if I didn't go immediately it would get worse"

(t = 3.01, p. <.01). Three low fear items [A6; A11; LA4] were associated with

significantly lower helpseeking scores: "I would never panic" (t = 2.64,

p <.01); "I would rather live in fear of having missed a breast cancer than

facing the fear of having a breast removed" (t = 4.62, p <.01); and "I don't

think I would be afraid if I discovered a breast problem" (t = 3.58, p <.01).

These items are included here to advance investigators' potential

understanding of affect in relation to helpseeking for future investigations.

Fatalistic Beliefs and Helpseeking Intention

The respondents scores were not evenly distributed on the FATE

measure (range = 1 to 4, M = 0.62, SD = .98), with many fewer women

responding in the direction of high fatalism. Women scoring high in fatalism

were significantly less likely to intend helpseeking in relation to a breast

120

symptom discovery as measured by the IHELP measure (r = - 0.47, p <.01).

This correlation suggests that as much as 22.1% of the variance in the IHELP

measure could be explained by the FATE score. The items measuring

fatalism in this study were specific to beliefs of powerlessness in relation to

developing breast cancer and perhaps dying from the disease. To the extent

that this measure of fatalism proves to be a valid measure in relation to breast

cancer, fatalism may have a negative influence on a woman's intention to

helpseek for breast cancer symptoms and correspondingly to her survival of

the disease.

Perceptions of Consequences and Helpseeking Intention

The distribution of CONSEQ was normally distributed in the survey

sample, with the mean of 58.25 substantially above the median score for the

scale (median = 50). Women in the sample generally perceived negative

consequences to be associated with delayed helpseeking. Scores on the

CONSEQ scale were significantly and positively related to the IHELP measure

in the survey sample (r = 0.49, p <.01), potentially explaining as much as

23% of the variance in helpseeking intention.

All CONSEQ items were largely endorsed in the direction of negative

consequences as an expected result of delayed helpseeking. Most women

reported that they would worry if they put off a breast evaluation (83.8%).

Most realized that delaying helpseeking would not prevent an undesirable

diagnosis (77.1%). And most indicated that waiting would not permit them to

121

avoid surgery (73.3%). Most agreed with the statement that the breast

problem was not likely to go away if untreated (86.7%).

Fewer women agreed that "the chance of losing (my) breast" would

increase (59.0%), that they would be "more likely to need major surgery"

(55.0%), or that "their condition would become more serious or get worse"

(66.3%). More than a third of the sample (n = 126, 37.8%) responded

negatively to the consequence of "possible death."

Social Norms and Role Constraints on Helpseeking Intention

Social norm scores (SOCNORM) for the sample ranged from 0 to 5,

but were not normally distributed, with more women indicating lower social

influence in relation to a breast problem (M = 2.0, SD = 1.52). SOCNORM

was significantly and negatively related to the IHELP measure

(r. = - 0.30, p <.01).

The second measure of social influences on helpseeking intention

(CONSTRAINT) examined social role related constraint on helpseeking

behavior in relation to three common social roles (sub-scales): being

employed (EMPLOYED); being married or partnered (PARTNERED); and

being responsible for child care (CHILDCARE). Since age effects confounded

some of these observed relationships, differences in the amount of role

related constraints were examined in relation to helpseeking intention within

each role grouping. For each of the CONSTRAINT sub-scales, high scores

indicated high perception of role-related constraints on helpseeking.

122

Overall, women who were responsible for childcare generally perceived

little constraint on their helpseeking. The CHILDCARE mean was 1.52 (range

0 to 6, SD = 1.44). Higher CHILDCARE scores, however, were significantly

associated with lower scores on the IHELP measure (r. = - 0.49, p <.01),

suggesting that those women who did perceive childcare related constraints

on helpseeking were less likely to intend helpseeking for breast cancer

*symptoms. ***

* º

A similar relationship was observed in regard to perceptions of partner *---***

or spouse related constraints on helpseeking (PARTNERED). Although most º

women perceived little partner-related constraint on their helpseeking --.

(M = 0.94, range 0 to 6, SD = 1.27), those women who did report higher

perceptions of partner or spouse related constraint scored significantly lower zº

in helpseeking intention (r. = - 0.49, p <.01). ~~

Employed women had significantly higher IHELP scores than -->

unemployed women (t = 7.32, p <.01), and sample women overall reported

low levels of employment related constraints (EMPLOYED) on helpseeking

(M = 4.23, range 0-10, SD = 2.51). However, in those women who reported

higher perceptions of employee-related constraints on helpseeking, these

perceptions were significantly and inversely related to helpseeking intention

(r. = - 0.44, p <.01).

The construction of the overall perceived role-related constraints

measure (CONSTRAINT) was discussed previously in Chapter 5. Scores on

CONSTRAINT ranged from 0 to 30, where 0 represented the lowest reported

123

perceived constraint on helpseeking and 30 the highest. Scores were not

normally distributed, with the majority of women reporting an overall low

perceived constraint on helpseeking (M = 5.66, SD = 6.13, SE = 0.33).

Respondents' scores on the CONSTRAINT measure were significantly

and negatively related to their IHELP scores (r = - 0.45, p < .01). This

degree of association suggests that CONSTRAINT scores could explain as

much as 20.4% of the variance in helpseeking intention as measured by the º:

|HELP measure. This observed finding is compatible with the reported º***

influence on helpseeking behavior itself in studies in the literature (Adam, et --al., 1980; Lierman, 1988; Dodd, et al., 1992). --.

To explore the relative influence of role status and role related

constraints on the intention to helpseek, the IHELP measure was regressed -:- º º

on the three dichotomously scored role status variables: having childcare --responsibilities (YES-CHILD), being a spouse or partner (YES-PARTNER), and - *

being customarily employed outside the home (YES-EMPLOY) in a standard

multiple linear regression analysis. The three role status variables were

entered together in the first step of the model. The coefficient of

determination (R*) for these variables was 0.089 indicating that together they

explained 8.9% of the variance in IHELP. In the second step the

CONSTRAINT variable was entered into the model. The addition of

CONSTRAINT at Step 2 resulted in 23.1% (or an additional 14.2%) explained

variance. The regression demonstrates that although role status is a

significant predictor of helpseeking intention, it is not as strong a predictor as

124

perceived role related constraints. All of the variance explained in the IHELP

measure related to being responsible for childcare (YES-CHILD) was shared

with CONSTRAINT, but additional variance in IHELP was explained by the

variables measuring role status for spouse or partner (YES-PARTNER) and

being employed (YES-EMPLOY). Table 6-3 displays this regression analysis.

Table 6–3

Two Step Regression of Helpseeking Intention: Role Status Variables andPerceived Role Constraints (CONSTRAINT)

Variables Beta E p Unique Variance Bº

YES-CHILD -0.13 5.50 0.02 0.022YES-PARTNER 0.20 13.96 O.O1 O.051YES-EMPLOY O. 14 6.22 0.01 0.034

(Step 1) .089

CONSTRAINT -0.421 59.66 0.000 0.189

(Step 2) .231

Overall F = 24.22 Significance of F: p <.01

Table 6–4 lists all of the study variables observed to be related to

helpseeking intention as measured by the IHELP measure and the possible

explained variance in IHELP associated with each. These variables are not

independent of each other and as a result several variables may be

accounting for the same measured variance (collinearity between variables).

Each of these variables is important, however, as each represents a possible

125

approach for an intervention designed to increase African American women's

helpseeking intention in response to the discovery of a potential breast

cancer symptom.

Table 6–4

Study Variables Associated with the Intention to Helpseek (IHELP)

Social Behavioral Variables: --

Study Variable Statistic p R*/Eta” º

ACCESS r = 0.46 <.O1 .21 IHABIT r = 0.39 <.O1 .15 --.CONSTRAINT r = - 0.43 <.O1 .19 ---SOCNORM r = - 0.30 <.01 .09

CONSEQ r = 0.49 . <.O1 .24 º

FATE r = - 0.47 <.01 .22 :RELIG r = 0.23 <.O1 .05 * g

Demographic Variables: zº,Study Variable Statistic p R*/Eta”

AGE r = 0.26 <.01 .O7EDUC r = 0.19 <.O1 .04

SYMPTOM t = - 6.35 <.01 .11HOUSEHOLD INCOME F = 8.17 <.01 .14

RELATIONSHIPS* E = 7.44 <.01 .07

* This refers to the categorical demographic measure: Married, Widowed,Single with Partner, Single Without Partner.

126

Model Testing for a Combined Model of Helpseeking Intention

A comparative analysis was carried out of the three proposed models

for predicting helpseeking intention discussed in Chapter 3. Model 1

contains the variables proposed to predict helpseeking intention in the

original Triandis model: perceived consequences of delaying helpseeking

(CONSEQ), two measures of affect (AFFECT; FEAR), and two measures of

social normative influences (SOCNORM; CONSTRAINT). Model 2 is a º

theoretically driven expansion of Model 1, adding the variables habit of ºhelpseeking (HABIT), physiological arousal to helpseek (SYMPTOM), and --

facilitating or constraining conditions in relation to helpseeking (ACCESS). :-Model 3 comprises all of the Model 2 variables, as well as additional variables ***-

derived from the focus group portion of this study: religiousness (RELIG), z:perceptions of racism in the health care system (RACISM), fatalistic beliefs in …relation to breast cancer (FATE), and knowledge of breast cancer symptoms I.

(TYPE).

Variable Modeling

Scatter plots of the dependent variable and each of the independent

variables were examined to check linearity assumptions of regression

analyses. The demographic variables age (AGE) and educational level

(EDUC) were maintained as continuous variables. INCOME was modeled by

the dummy variables LOWINC (reported family income of $9,999 or lower)

and MIDINC (reported family income of $10,000 to $39,999), using women

with reported family incomes above $40,000 as the reference group.

127

Dichotomous variables were coded 'O' to indicate absence of the

characteristic and '1' for presence of the characteristic. These were: being

symptomatic, that is, reporting current self-monitoring of a symptom

(SYMPTOM), having a partner or spouse (YES-PARTNER), currently or usually

employed (YES-EMPLOY), and having the responsibility for childcare

(YES-CHILD).

Comparative Model Testing :

All three models were built using the same approach. First a full * * *

* * *

regression model was built for each of the models to ascertain the maximum

explained variance from the model variables. Forward, backward and --.

stepwise methods were used to study possible shared variance effects *-*-

among the model variables. Interaction terms were explored for model main -:~ *

effects. The same correlation matrix, including all of the main effects ºvariables to be tested in the respective models, was used to formulate all I

three of the regression models.

To ascertain the influence on social desirability effects in the

measurement of the dependent variable, IHELP, all three of the models were

rerun with the inclusion of the Crowne Marlowe social desirability (CM-SD)

scale scores as an additional independent variable. In no case did the CM-SD

score variable attain a significant F statistic to remain in the model.

Model 1 - The Original Triandis Predictors of Behavioral Intention

According to the Triandis model (MODEL 1), the intention to perform a

behavior, i.e. helpseek for a self-discovered breast symptom, will be

128

influenced by perceptions of the consequences (CONSEQ), affective

responses (FEAR, AFFECT), and social normative factors (SOCNORM;

CONSTRAINT). Model 1 was tested by regressing the intention to helpseek

(IHELP) on the five independent variable measures. The simultaneous

multiple regression analysis accounted for 31.48% of the variance in IHELP.

Exploration of interactions between the models main effects did not result in

an improved formulation of the model. The E tests for CONSEQ and ºº *

CONSTRAINT were significant at the p3.01 level, with these two variables * -

**

accounting for 31.7% of the variance in IHELP. Table 6-5 displays this --

analysis. --.

Table 6-5 -:~ *

Multiple Regression Analysis of Model 1 Variables ºI

Multiple R O.56 Overall Equation F = 61.33R-Square O.31 Significance of F p <.01

Variable Beta E p

CONSEQ O.37 27.01 .01CONSTRAINT -0.30 30.92 .01

Constant O 23.92 .01

129

Model 2 - Testing the Expanded Triandis Model

Model 2 added the variables HABIT, SYMPTOM, and ACCESS (Step 2

of the regression analysis), with a resulting 10.7% increase in the explanation

of variance in IHELP over Model 1. The F tests for the variables from Model 1

remained significant, with the addition of three model variables, HABIT,

ACCESS, and the interaction between being symptomatic and perceiving role

related constraints on helpseeking (SYMP"CONSTR). These five variables

explained 42.2% of the variance in IHELP. The inclusion of the interaction

between SYMPTOM and CONSTRAINT (SYMP"CONSTR) in the model

suggests that perceived constraints on helpseeking related to role

expectations were more influential on helpseeking intention in Women who

were currently symptomatic. The additional explained variance in Model 2

supports the theoretical expansion of the Triandis variables to model a less

linear decision-making process in the formation of intention for helpseeking

behavior. Table 6-6 displays this analysis.

º º

ºº

--

::º

130

Table 6-6

Multiple Regression Analysis of Model 2 Variables

Multiple R 0.650 Overall Equation F = 44.97R-Square 0.422 Significance of F p <.01

Variable Beta E p R*.

CONSEQ 0.19 14.54 .01 2.CONSTRAINT -0.232 20.14 .01 * *

(Step 1) .315 - * *

**

HABIT O.179 . 14.13 .01 .."ACCESS 0.229 20.25 .01 . .SYMP*CONSTR -0.138 7.64 .O1 ---Constant O 12.19 .01 * *-

-

(Step 2) .422

* º

* * *

* º

One additional variable passed the tolerance test to enter the model, ºthe interaction between HABIT and ACCESS. The inclusion of this interaction ~~

variable, however, introduced serious structural multicollinearity into the

model evidenced by a beta coefficient of opposite sign than the known

relationship with the dependent variable. Since both of these variables were

represented in the model as main effects, no further attempts at model fitting

in this regard were carried out.

Model 3 - Adding Influences Proposed by the Focus Group Women

The Triandis model, as previously reported in the literature, appears to

explain significant amounts of variance in the helpseeking measure. Model 3

was examined for the additional contribution of variables derived from the

131

focus group data phrases by adding the variables RACISM, RELIG, and FATE

at Step 3 of the regression analysis. The F test for one additional main

effects variable was significant at the p <.01 level, FATE, as was the

interaction between FATE and RELIG (FATE"RELIG). The model including

the interaction variable best described the data, improving the R* explained

variance for the IHELP measure to 45.26%. Table 6-7 displays this analysis.

Table 6-7

Multiple Regression Analysis of Model 3 Variables

Multiple R 0.673 Overall Equation F = 42.160R-Square 0.4526 Significance of F p <.01

Variable Beta E p R*

CONSEQ O.17 12.62 .01CONSTRAINT –0.17 10.20 .O1

(Step 1) .315

HABIT 0.19. 16.73 .01ACCESS 0.20 15.64 .01

SYMP*CONSTR -0.11 4.82 .03

(Step 2) 42.2

FATE*RELIG -0.20 15.58 .01

Constant O 13.16 .01

(Step 3) 45.3

132

Residual Diagnostics for Model 3

Studentized residuals were plotted against hat-values to visually

identify observations with possibly extreme influence. Cook's Distance

statistics for these potentially influential observations were then examined as

well as covariance ratios to ascertain whether any observations had undue

influence on the beta coefficients of the regression equation. Three

observations with high Studentized residuals, hat-values or Cook's Distance

statistics were identified as influential to the regression coefficients (Fox,

1991; Achen, 1982). The data were checked for these observations and

found to be correctly coded. These three individuals were all found to have

helpseeking scores more than two standard deviations below the mean.

Since these women could be described as displaying a more intense level of

the disposition being measured, it was determined that these observations

should not be deleted from the data. Rather they were judged to provide

important input to the calculation of the beta coefficients because they were

scores of women who were highly indisposed toward helpseeking.

Scatterplots were also examined of all independent variable values

against the raw residuals as a final check of the assumption of linearity. All

plots were found to be consistent with this assumption.

The Contribution of Demographic Variables

Lastly the demographic variables AGE, EDUC, INCOME, YES-CHILD,

YES-PARTNER, and YES-EMPLOY were entered into the regression analysis

133

at Step 4 to ascertain whether any additional variance could be explained by

these variables. socia behavioral theorists (Triandis, 1980, Ajzen & Fishbein,

1980) posit that all demographic individual differences will be expressed in

terms of the measures of belief and attitude in the model, thus no additional

explained variance is expected if the belief and attitudinal variables are

inclusive enough to cover the domain. In this investigation, no additionalº

variance in IHELP was explained by the addition of the demographic 2.

variables. This observation supports the claims of the social behavioral :

theorists and adds evidence for the goodness of fit of this social behavioral -

model of helpseeking intention. -:Separation of the effects of poverty and cultural beliefs has rarely been * * *

possible in prior investigations of health behavior. In order to attempt to -:explore the relative influences of poverty and social behavioral beliefs, one ºlast regression maneuver was carried out. The household income variables I.

(LOWINC, MIDINC) were forced to enter Model 3. Next variables were

removed from the model to discover which shared explained variance with

the income measure. Each of three model variables, ACCESS, CONSEQ,

and FATE"RELIG, shared large amounts of variance with the dummy variable

LOWINC, rendering LOWINC insignificant when either of the three remained

in the model. The variables HABIT, CONSTRAINT and SYMP*CONSTR

shared less variance with the income variables. A model containing these

three and the income variables explained 33.7% of the variance in IHELP,

134

whereas the model containing the income variables alone explained only

10.5%.

Figure 6 - 2 on the following page displays the relationships between

the significant model variables and the IHELP measure (Model 3), the 'best'

model of the data in this investigation. This model's structure draws strong

support from the Triandis model of social behavior but adds two new focus

group variables.

135

* Perceptions of Consequencesof Delaying Helpseeking

* Access to Services

* Habit of Helpseeking

* Role Related Constraints

on Helpseeking

* Currently Symptomatic

HelpseekingIntentionR* = .453

+ Fatalistic Beliefs

[3 = O.17

■ 3 = 0.20

■ 3 = 0.19

■ 3 = –0.17

■ 3 = –0.11

B = -0.20

about Breast Cancery

+ Religiousness

Figure 6-2: Univariate Correlation in Best ModelExplaining 45% of Variance in Helpseeking Intentionin a Sample (n = 330) of 352 African American Women.

* Variables from Original or Theoretically Expanded Triandis Model+ Variables from Focus Group Data

136

CHAPTER 7

DISCUSSION OF RESULTs

Overview of Findings

The self-discovery of a breast cancer symptom occurs within the

context of beliefs and feelings, gender roles, and social and economic

realities which may differ within culture. African American women were

chosen for this study population because of their later staged breast cancer

at diagnosis. The purpose of this survey research was to identify factors that

influence the timing of their helpseeking for breast cancer symptoms.

Focus groups were conducted to explore possible influential factors. A

survey was then constructed from focus group data critiqued by the focus

group women and African American nurse researchers. The survey was then

used in a new sample of African American women (N = 352).

Perceptions of the consequences of delaying helpseeking, health care

utilization habits, and access to services were positively and significantly

related to the intention to helpseek for a discovered breast symptom.

Fatalistic beliefs in relation to breast cancer, religiousness, perceptions of

social role constraints on helpseeking, and a current worrisome breast

symptom were significantly and negatively related to helpseeking intention. A

hierarchical multiple linear regression model containing these variables

explained 45.3% of the variance in helpseeking intention. While younger

aged, lower income, and unmarried women were significantly less likely to

º

137

intend helpseeking for a discovered breast symptom, adding these

demographic variables to the social behavioral model contributed no increase

in explained variance.

This study has been a productive initial investigation of factors

influencing African American women's helpseeking intention for self

discovered breast cancer symptoms. Although the observed relationships atº

times have particular salience to African American women, more often they 2appear to apply more broadly to gender related behavior. To the extent that -

women share gender role responsibilities, relative poverty, and perceptions º

about the threat of breast cancer, the African American women in this sample -:***-

have provided a picture of helpseeking behavior that begins to characterize

the phenomenon of helpseeking in their sisters of other American cultural º:- '

*-*.}

groups. **---,

*

The Overall Intention to Helpseek

Overall, women in the sample were inclined to helpseek immediately

for a breast change they judged to be worrisome, but a minority of the

women indicated significantly lower intention to helpseek. Assuming that all

the women in the sample understood breast cancer to be a threat to life, it

might have been anticipated that when asked whether they were likely to

seek a provider evaluation of a breast symptom, all of the women in the

sample would have responded affirmatively. The fact many women

138

responded negatively to multiple helpseeking items and that 8% responded

negatively to at least half of the helpseeking items is of great interest.

The analysis of the IHELP scale suggested that perhaps more was

being measured than simply an overall likelihood of helpseeking. The factor

analysis of the IHELP measure led to three item clusters strongly suggestive

of coping strategies in relation to the stressful experience of breast symptom

discovery. They were termed in this investigation: immediate action,

detachment or disassociation, and avowed inaction. These three

conceptualizations bring to mind three of the coping style categories of the

Folkman & Lazarus model (1984), Confrontative Coping, Distancing, and

Escape/Avoidance, respectively. Should this prove to be the case with further

investigation of this measure, the tool might provide not only an overall

estimate of helpseeking intention but some clues to how women might be

likely to cope with a discovered breast symptom.

Warshaw & Davis (1985) described the distinction between "formed

intention" and "expectancy" in relation to measures of planned behavior,

raising the issue of whether it is intention or expectancy that is being targeted

by the IHELP measure. More exploration of the tool will be needed to

determine the response to this query. Perhaps women who are currently

monitoring a worrisome change in their breast have a more fully formed

intention in relation to helpseeking, whereas, in women without breast

symptoms, expectancy of behavior is more often being measured. A better

139

term for the phenomenon being explored may be "the likelihood of

helpseeking." To date there are no prior investigations in the literature where

differences in helpseeking intention between these two groups of women has

been described or measured.

Women in this sample who described themselves as currently

monitoring a change in their breast reported less likelihood of helpseeking

than asymptomatic women. In this sample, women monitoring a breast

change comprised one third of the survey sample. Since this percentage has

not been reported elsewhere in the literature, and in light of the non-random

nature of the sample selection, the validity of this estimate should be an

important focus of future investigations.

Significant differences in helpseeking intention were observed between

women without breast symptoms and women who were currently monitoring

a breast change, with symptomatic women indicating lower helpseeking

intention. This observed difference suggests that women with asymptomatic

breasts might tend to misjudge the complexity of the decision to seek a

provider evaluation and over estimate the promptness and appropriateness of

their helpseeking for potential breast cancer symptoms. More important for

symptomatic women, educational campaigns targeting women who are

currently monitoring a change in their breast might possibly decrease the

time to initial provider evaluation for these women.

It would appear that both the influence of social desirability response

bias and the tendency to overstate the intention to helpseek in the absence of

140

proximity to experiencing actual symptoms make measurement of the

intention to helpseek especially difficult and certainly more complex than

described by other investigators of helpseeking. Nonetheless, the observed

differences described above suggest that the IHELP tool is measuring

important aspects of helpseeking intention, adding support for its validity.

Discussion of Demographic Relationships with Helpseeking Intention .An analysis of demographic data on the survey sample indicates that

lower income women in the sample were more likely to indicate lower ..

intention of helpseeking for a breast cancer symptom. This observation is ..consistent with other investigator's reports of lower income women presenting e-º-

with later staged breast cancer symptoms (Richardson, et al., 1992; º4.

Mandelblatt, et al., 1991; Farley & Flannery, 1989). Of significance here is *that the women in the sample were already displaying the potential effect of º

their poverty on their potential survival from breast cancer by expressing an

overall lower intention to helpseek for a discovered breast symptom in the

form of a lower IHELP score. Certainly this lower IHELP score is

understandable in the context of a family income below $9,999 per year and

the relatively high cost of living in the San Francisco Bay area. To intend to

spend resources for the evaluation of a breast symptom that may prove to be

benign would require prioritizing this potential need above the needs of

Others and above One's own needs that were not breast health related.

141

Younger women in the sample were less likely to intend to helpseek.

Since the age range of the women did not include large numbers of women

above the age of 55, this observed relationship exists within the spectrum of

women in the pre and peri-menopausal years and can not be generalized to

older aged women. Helpseeking intention might well be curvi-linear in

distribution with both younger and older aged women less likely to intend

helpseeking, but not enough data points in the older aged group were .available to examine this possibility.

The absence in the literature of a longitudinal study of helpseeking º

intention by age, for any specific health problem, precludes a clear * *

understanding of the implications of the observed difference in helpseeking

intention by age in the current investigation. It is not known whether persons

modify their attitudes about seeking evaluation for symptoms as they age and

gain health and illness related knowledge and experience; or whether the .

shared health and illness wisdom of each age cohort remains relatively stable

as the cohort ages; or whether individual differences between persons'

helpseeking behavior remains relatively stable throughout life. If the first

situation is true, a person's helpseeking intention could be expected to

developmentally increase without intervention. If the second is true, an

intervention to improve helpseeking intention could target a particular age

cohort with measures designed to modify the collective wisdom about the

value of helpseeking. If the third situation is true, then target groups must be

screened for individuals at risk for delayed helpseeking for symptoms

142

suggestive of breast cancer. Since most biopsychosocial models of behavior

would suggest that several of these situations might exert influence, planned

interventions would require multiple foci. Some interventions might target age

cohorts for educational intervention to modify belief and behavioral influences

on helpseeking. Others might emphasize individual screening of biologically

high risk women to identify those at risk of delayed helpseeking. The

observed relationships in the present study suggest screening might focus on

perceived constraints on helpseeking related to social roles, fatalistic beliefs

about breast cancer, and underestimates of the consequences of delayed

helpseeking.

Lastly, perceptions of racism in the health care environment was not

observed to significantly influence helpseeking intention in the sample

women. This finding is encouraging, as the need to interact with individuals

and institutions that potentially or actually exhibit racism is an ever-present

context for African American women in the United States. Scholar Derek Bell,

in his work Faces at the Bottom of the Well, characterizes racism as an

"integral, permanent and indestructible component" of American society

(1992, p. ix). Although some might hope he is mistaken, perceptions of

racism in the health care environment reported by this study's sample women

support his contention.

Few studies have explored the degree to which a woman might decide

not to have a health screening visit in order to avoid a potentially unpleasant

racist encounter. In the current study, however, concern that she might

143

experience a racist encounter is apparently of little consequence when

deciding whether or not to seek help for a breast symptom.

The Power of Role-Related Constraints

A higher helpseeking intention was observed in women who were

currently or usually employed. A complete interpretation of this observed

relationship will require further study. It may be that employed women and .

those usually employed have increased access to health care insurance,

making the cost factors related to helpseeking less prohibitive. But so many

low income jobs fail to provide health care benefits that this seems a doubtful ºexplanation. Perhaps a relationship could be charted in relation to the *-

likelihood of private or Medicaid health insurance benefits for those employed :or recently employed when compared to those who have been more :disenfranchised from the work/benefits environment. I

Another offered explanation of similar findings is that women who do

not often leave their homes are over-represented in the unemployed group,

but this objection is mitigated somewhat by the sample selection method that

recruited women from other organization settings outside the home. Further

study of the relationship between employee role and helpseeking intention

will be needed to confirm and clarify this observed relationship.

Reported social normative influences on more immediate helpseeking

were observed to be significantly if weakly related to lower helpseeking

intention in the study sample. One explanation of this unexpected

144

observation is that the measure of SOCNORM was actually indicative of

something other than normative influences on helpseeking. As described in

Chapter 5, the SOCNORM measure was altered from the classical

expectancy-value format because of an apparent cultural unacceptability of

what were described by focus group women as tedious, repetitive and

condescending questions. Indeed, this reaction to the expectancy-value

measurement format is probably not unique to African American women, and

more study populations might in fact reject it if given the opportunity to :

critique measures in advance.

The sample women's responses to the SOCNORM items could be * -

interpreted to be expressing autonomy, a message that was present in the

focus groups as well. For instance, several items judged by focus group :4.

women as offensive and deleted from the final survey questionnaire were

criticized because they seemed to infer that a woman could not make her …

own decision about helpseeking and would have to be told what to do by

others. Perhaps this cultural interpretation remained in spite of item

deletions. It seemed important to focus group women that it be understood

that African American women make their own decisions. This importance o:

this message is conveyed vividly in the words of the African American poet

Audre Lorde in her collection of essays about her liver cancer experience,

A Burst of Light: "...I have a right to decide what happens to my own body,

not because I know more than anybody else, but because it is my body. And

145

I have a right to acquire the information that can help me make those crucial

decisions" (Lorde, 1990, p.35).

Women's concern that investigators as well as providers adequately

acknowledge their autonomy of decision emerges as particularly important in

discussions of illness behavior, and perhaps was not dealt with directly

enough in the current investigation. Similarly, a valid and acceptable

measure of social normative influences on the decision to helpseek in Africanº

American respondents requires further development.

Holding particular social roles were observed to influence helpseekingº

intention in the sample women in this study. Having a spouse or being a .widow was associated with increased helpseeking intention compared to

* *

being single with or without a partner. Having the responsibility for providing º

care for children was associated with an overall decreased helpseeking ºintention. And being employed was associated with an overall increased

helpseeking intention. But in terms of all three of these roles, the attitude that

holding the social role constrained helpseeking was universally associated

with lower helpseeking intention. The perception of role constraints on

helpseeking was observed to be a stronger influence on helpseeking

intention than simply holding the gender role, suggesting that such

perceptions of gender role related constraints on health and illness behavior

might put some women at particular risk for delayed helpseeking for breast

CanCer.

146

Had only the holding of gender roles been examined in this study, the

observed relationships between role status and helpseeking intention would

have simply served as indications of groups to be targeted wn behavioral

interventions to improve helpseeking intention. Since the study also

measured attitudes toward helpseeking in relation to each of the roles,

guidance as to the nature of the intervention is also forthcoming. The

relationships observed between perceived role constraints and helpseeking, º

while explicated by the African American women in the sample have clear -

implications for women of other population groups. Gender behavior theory º

can be used to guide interventions to modify attitudes about the value of .helpseeking in the context of social role demands.

Focus group women suggested married women might project differing ºrole expectations in relation to immediate helpseeking for a breast symptom ºthan single women. This relationship was, in fact, observed in the survey

sample. The hypotheses focus group women offered were that unmarried

women were more uncertain of their intimacy relationships, would feel more

threat in relation to a potential illness that might disfigure them, would worry

about the loss of a sexual relationship, and/or would be more concerned

about stigmatization because of a breast symptom evaluation. Since these

issues were beyond the scope of the current investigation, these hypotheses

must await further research.

147

The Power of Beliefs

Perceptions of consequences for delaying helpseeking for breast

cancer symptoms were generally but universally acknowledged by the

women in the study sample. Although not helpseeking was associated with

"worry" about the symptom in more than 80% of the women, only one half to

two thirds of the women endorsed the consequence of the likelihood of more

serious disease or extensive breast surgery as a result of delayed t

helpseeking. Approximately 25% suggested that they might avoid a cancer

diagnosis if they delayed. And more than a third disavowed the

consequence of death as an increased possibility of delay. .It is possible that this disavowal of death as a consequence of delay is **.

a reflection of women's knowledge that most breast symptoms are benign. º*

But although one is not likely to die from a discovered breast symptom, º"possible death" is clearly within the range of logical outcomes if the symptom 3.

is cancer-related, particularly if treatment is delayed. Studies observing that

the exacerbation of a previously discovered symptom was what eventually

motivated helpseeking in women who initially delayed (Lierman, 1988; Dodd,

et al., 1992) raise concern about consequential beliefs that deny a potential

threat to life in relation to delaying evaluation of breast symptoms. Why a

minority of women might not anticipate the likely advance of their breast

disease with delayed helpseeking is beyond the scope of the current

investigation.

148

The majority of the women's responses in relation to the seriousness of

the imagined breast symptoms, the likelihood that they would indeed signal

the arrival of breast cancer, are strangely consistent with a resignation to the

relentlessness of breast cancer being portrayed in recent breast cancer

'survivor' stories in the media. Yet, for many, this assessment of

consequences stopped short of endorsing an advancing disease likely to

threaten life. This view of the breast cancer threat seems congruent with the

popular knowledge about breast cancer presented in the media, and with the

reported increased belief on the part of African Americans compared to

Caucasian Americans that cancer is not preventable (Jepson, et al., 1991).

Overall fatalism in relation to breast cancer was not observed in this

study sample. Rather, the minority of women with higher fatalism scores

were significantly less likely to intend helpseeking. This study finding is

supported by anecdotal reports of fatalistic beliefs in women who present

with late staged breast cancer.

In September of 1992 the National Cancer Institute (NCI) projected a

one in eight lifetime probability of American women developing breast cancer.

Although this estimate was extrapolated based on a life expectancy of 95+

years without death from some other cause, many women immediately

contacted the cancer society for information on breast cancer risk interpreting

the statistic to mean that one in eight women would develop breast cancer in

their immediate future. The statistic "one in eight" when applied in one time

frame across any homogenous group would signal a 12.5% incidence level.

149

In actuality, a cancer free, 60 year old, African American woman's risk of

developing breast cancer sometime during the remainder of her life is 2%

(NCI, 1992).

A misunderstanding of relative risk for breast cancer, coupled with any

disposition toward fatalism regarding one's inability to survive the disease

once it is diagnosed, would predict a powerful potential effect on a woman's

behavior in the event of a breast symptom discovery. The measure of

fatalism (FATE) used in this study targeted specific attitudes about breast

cancer framed in terms of denial of personal control, indicated by its

correlation with the Chance MHLC scale. While being religious in itself did

not predict lower levels of helpseeking intention, the interaction of high

fatalism and high religiousness was strongly associated with lower levels of

helpseeking intention.

Interventions to improve helpseeking intention in relation to possible

strongly seated beliefs about one's susceptibility and perhaps one's destiny

regarding breast cancer are in the realm of experimental interventions. Such

beliefs are only one part of an individual's epistemological framework which

guides overall life experience. The epistemological framework may be

proving highly beneficial overall to the individual's health concerns as well as

more general life issues. The challenge of an intervention would be to

integrate new ideas into the existing framework to make appropriate

helpseeking for breast symptoms more possible for individuals where

helpseeking intention is least. Current intervention projects like "En Acción

2.

150

Contra el Cancer" directed at countering fatalism in relation to cancer illness

in Latinos may offer insight into the likelihood of the success of such

interventions (Perez-Stable, et al., 1992).

The Power of Resources

The overall description of high access to health care services is

somewhat puzzling. The literature is uniformly descriptive of a relative lack of

access to services in the African American population, and reports of general

lack of access to services was anticipated in this sample which included large

numbers of low income women. One explanation is that the group of women

surveyed were women who were, in fact, more able to access services than

other women in the community. This is possible given the volunteer nature of

the sample selection which would have under represented women who have

difficulty accessing community services in general. Another possibility is that

the women's assessment of their access to services were within the Context

of their individual socio-cultural experience, and were thus rated adequate. If

the conditions of their access to services were evaluated by women from

other socio-cultural environments, perhaps the ratings of access adequacy

might have been different.

The current study did not include an objective evaluation of women's

assess to services, but it would appear that women's perceptions of their

access is a potential influential to their decision to seek an evaluation for a

breast symptom. The examination of the particular components of the

151

access scale showed concern for the cost of the services and practical

problems with actually using the health care agency were more likely to be

associated with decreased helpseeking intention than the woman's

relationship with the provider.

Women's self-report of lack of access to services and lower habits of

health care services utilization may indicate a real unavailability of diagnostic

and treatment services. But it may also indicate a relative lack of experience

in the strategies needed to attain health care for potentially serious illness. If

early case-finding for breast cancer is the desired outcome, all women will

need to know how to achieve an evaluation o a discovered breast symptom

without fearing the risk of devastating financial repercussions.

The habit of health care utilization is theoretically one of several

influences on helpseeking behavior for breast cancer symptoms, but if one

considers for a moment what types of factors might go into the formation of a

habit in relation to a given behavior, it is possible to see that a measure of

health care utilization habits may potentially be an indirect and composite

measure of several influences, among them one's past health problems or

one's prior access to services. To habitually engage in a behavior one must

have the economic resources to do it, the practical capacity to do it, have

time to do it in the context of one's other role responsibilities, tolerate or

perhaps even enjoy doing it. One might argue that to do it reliably and often

one must see some very particular benefit from doing it. Since those who do

not have the habit of generally helpseeking for illness problems might have

152

any number of reasons why this is the case, a clear interpretation of the .

observed relationship between habit and helpseeking intention is problematic.

To the extent that habits of utilization are predictive of helpseeking,

women who do not frequently utilize the health care system will be at

increased risk for delayed helpseeking for a breast cancer symptom.

The observed shared variance between household income, access to

services, misperceptions of the consequences of delayed helpseeking, and

high religiousness coupled with fatalistic beliefs about breast cancer gives

insight into which of the variables here observed to influence helpseeking

intention might be embedded in poverty. These are in contrast to other

effects observed as significant which span the income range, namely

perceptions of constraints related to social roles, the current monitoring of a ºf

breast change, and habits of health care utilization. yº*

The Power of Knowledge

Women in this sample indicated only a moderate level of helpseeking

intention by breast cancer symptom presentation. Several breast cancer

symptom presentations were apparently unrecognized by slightly over 40% of

the sample women. Because of the possibility that a misinterpretation of

directions for completing this scale may have occurred at least in some of the

women, this estimate may be higher than the actual proportion.

Earlier studies have suggested that African Americans may be less

knowledgeable about cancer symptoms than Caucasian Americans (EVAXX,

153

1980), and that African American's general knowledge about cancer risk and

the need for prompt treatment is es than that of Caucasian Americans

(Jepson, et al., 1991; Denniston, 1981). This investigation studied only

African Americans so no comparative evaluation can be suggested.

However, this study sample's knowledge of potential breast cancer symptoms

generally mirrored reports of symptom knowledge in studies of other

population groups, namely knowledge of the most common presentation of a

breast mass and less awareness of other symptom presentations.

Sample women were more likely to intend helpseeking in relation to a

mass or 'lump' presentation, supporting the findings of other researchers

(MacArthur & Smith, 1981; Nichols, et al., 1981; Lierman, 1988; Feldman, et

al., 1983; Richardson, et al., 1992; Gould-Martin, et al., 1982), and suggesting º

that African American women are more similar to than different from other ;populations of women that have been studied in regard to their knowledge of }

breast symptom presentation. Since there are no reported surveys of

Caucasian women's intention to helpseek for the array of breast cancer

symptom presentations, it can not be determined whether the percentage of

the sample indicating that they were not likely to seek an evaluation for a

dimpling in the skin of their breast (44%) or for a developing nipple retraction

(41.8%) was more or less than it might be in other populations of women.

154

The POWer of Affect

An examination of a scatterplot of the raw residuals of the model and

the values for AFFECT and FEAR revealed no suggestion of a curvilinear

relationship to support Antonovsky & Hartman's proposal that affect is higher

at both extremes of the time frame for helpseeking (1974). There were no

significant relationships observed between affect and helpseeking intention.

Only two of the affect analog measures were significantly related to

helpseeking intention. Both high expectations of anger and high expectations

of shame were associated with lower helpseeking intention. This represents

the first empirical measure of anticipated affect in relation to helpseeking

intention, although shame was anecdotally reported as related to delayed

helpseeking by Antonovsky & Hartman (1974). Anger in relation to discovery

of a breast symptom has not been addressed in studies of the timing of

helpseeking. An exploration of fear in relation to events surrounding

symptom discovery did not provide new insight into how this affective

response might influence helpseeking. Methodological considerations related

to imagined breast symptom discovery versus actual breast cancer

experience may have limited the ability to access potential influences related

to fear as well as other affective responses.

One on-going dialogue among social behavioral theorists is the

discussion of whether affective influences are subsumed by the measures of

perceived consequences and social normative influences (Ajzen & Fishbein,

1980) or whether affect needs to be included in the model individually. The

-

155

affect variables in this model failed to enter the model, adding empirical

support for Ajzen and Fishbein position. But this lack of observed systematic

relationship between emotion and helpseeking intention remains

unsatisfactory in relation to experiential knowledge that one's affective state

can indeed influence one's behavior, and the shared hypothesis on the part

of women and researchers alike that affect has some, albeit complex,

relationship to helpseeking intention.

Perhaps affect becomes an active influence only in symptomatic

conditions. Were this the case, measurement of affect, at the time it is

exerting an influence on helpseeking presents formidable measurement

problems. Although further exploration of the possible effects of affect on

helpseeking remains important, the potential to translate such an

understanding to a designed intervention remains challenging.

The Benefits of Triandis' Model and Philosophy of Method

The Triandis model purporting to predict behavioral intentions in terms

of only three variables, perceived consequences, affect and social factors.

Other variables such as habits, facilitating environmental conditions and

physiological arousal are only deemed influentia after a formed intention is

reached, mediating the ability to carry out the intended behavior. In this

study it was hypothesized that, in fact, intention formation or at least

behavioral expectancy is not so linear a process. All of the Triandis model

variables were rather believed to be potentially significant to the intention to

t *

y

156

helpseek. Model testing supported the belief that, at least in the case of

helpseeking intention, the larger variable list provides a better model of the

data than the original Triandis model.

Following Triandis' philosophy of methodology to cany Out a Culture

specific investigation of behavior, or in this case helpseeking behavioral

intention, offered additional value. In the course of preliminary work to create

culturally relevant measures of the study variables, additional variables

emerged as potentially significant and worthy of exploration. Two of these

additional variables proved to add to the explanation of variance in

helpseeking intention and were retained in the construction of the best model

of helpseeking intention.

Guided by both the original model put forth by Triandis and his º

philosophy of within-culture measurement, this investigation resulted in a ;}model with the potential to offer significant explanation of helpseeking in

African American women. The combination of variable measures attained in

this investigation, taken together, could account for as much as 46% of the

variance in African American women's helpseeking intention for self

discovered breast Cancer symptoms. Additional explanation of variance is

potentially possible if measurement problems can be solved for several other

variables still suspected as potentially influential to helpseeking intention.

The model of helpseeking intention has particular power when

compared with the anecdotal reports in the literature of women who present

with late staged breast cancer. The reported observation that poorer women

*

157

have more advanced staged breast cancer is common in the literature

(Mandelblatt, et al., 1991; Richardson, et al., 1992; Freeman & Was■ ie, 1989).

The implications are more chilling when even in advance of symptoms poor

women envision themselves as less likely (less able?) to helpseek in the

event that they discover a worrisome change in their breast.

At least one study of the timing of helpseeking for breast cancer

symptoms suggested that women's descriptions of social role constraints as

reasons why they delayed helpseeking were simply rationalizations for

inappropriate behavior and denial of obvious illness (Adam, et al., 1980). The

women in this study described their social role obligations as constraining onl

their helpseeking even in the absence of symptoms, although this effect was

even more powerful in women who were currently monitoring a worrisome

change in their breast. Rather than creating a post hoc rationalization of

;irrational behavior, the current study suggests that women are more likely at

risk for late staged tumor presentation as a result of pre-existing role

perceptions that dictate their health behavior.

These and other similarities between the modeling of helpseeking

intention in these well women and the descriptions of women who present

with later staged tumors suggest that women at risk for delayed helpseeking

can be identified prior to developing breast cancer symptoms, and

interventions can be directed at encouraging a reformulation of that intention

to improve the timing of helpseeking.

158

Study Limitations

Because African Americans comprise only 10% of the population of the

United States, locating a randomly selected sample of African Americans for

survey research can prove quite difficult and expensive (Smith, 1993). Even if

the researcher concentrates the search for participants in areas where large

numbers of African American families live, the number of households

contacted must exceed the needed number of participants by several fold.

These practical considerations guided the sample selection for this

investigation which relied on community group contacts and snowball

techniques. As a result, the volunteer nature of this sample may have had an

effect on the estimates or the effect sizes of observed relationships, and

perhaps possibly on the significance of the relationships themselves. Future

studies replicating aspects of this investigation in randomly selected samples

:will be needed to add support for the observations reported here.

Methodological problems and practical considerations emerge in the

selection of samples to represent all parts of the population being studied.

These deserve consideration. Populations seen to be at potential risk for

higher incidence of breast cancer or delayed helpseeking are traditionally

least represented in study samples: the elderly, the poor, and women of

color. Community based research improves sample representation of these

groups somewhat, but those who are housebound or homeless, without

transportation, and too engaged in procuring essential needs to participate in

research studies remain relatively voiceless in the study results. Offering

159

some reimbursement for time spent participating in research and bringing the

study to the neighborhood were part of this study's design to include a full

range of voices. Even with these considerations, older women found

participation too problematic.

It is not clear whether the women in the sample were voicing their own

beliefs about the influences on helpseeking intention or the popularly held

beliefs of the larger cultural group of which they are members. Although

each of the survey items were framed in terms of a personal response, when

a personal response was not forthcoming women may have voiced the

collective wisdom instead This response bias is related but different than the

classic social desirability response bias assessed by the CM-SD scale in this

study. The collective wisdom, as expressed by the focus group women, was

the expectancy of helpseeking as soon as possible for all threatening

symptoms, regardless of other responsibilies to family or employer, in spite

of fear, without regard to economic realities, even if access to services is

problematic. Responses that verbalize the collective wisdom would

universally underestimate the potential ‘true score' of an individual women in

relation to all these variables. This would suggest that all reported

relationships in this study may be under estimated in the woman who is

actually engaged in a helpseeking decision. That this is true is supported by

the lower scores for helpseeking in symptomatic women in the survey

sample.

160

Survey design, while advantageous for broad explorations of many

potential inter-related variables, limits the depth of understanding possible in

relation to any one relationship. Although social behavioral theory offers

hypothetical explanations of the relationships, further investigations, narrower

in scope and richer in qualitative data, will be needed to enrich the

understanding of the relationships here suggested as possibly significant to

helpseeking behavior. These future investigations should focus on evaluating

the findings of the current study as well as searching for theoretically sound

ways to translate them in to behavioral interventions to influence helpseeking

intention. Although the intention-behavior relationship is supported by

numerous investigations of other health related behaviors, longitudinal

investigations are needed to understand whether and how helpseeking

intention changes over time and how well it predicts helpseeking behavior for

breast cancer symptoms.

The observed difference in helpseeking intention in relation to age

raises some concern, and a complete interpretation of this relationship is

beyond the scope of the current study. Since longitudinal studies of

helpseeking intention have yet to be carried out, this relationship remains

unexplained. There were relatively few women over age 60 in this sample

limiting the generalizability of findings. Future studies of older age group

women should explore study variables as they apply to this population,

expanding role related constraints to include roles held by the older aged

group. Studies with samples than span across the age range should explore

161

the possibility of a curvilinear relationship between age and helpseeking

intention. Hypothetically both younger and older aged women might have

lower helpseeking intention for diverse reasons.

The necessary omission, due to measurement problems, of a measure

of knowledge of symptom presentations limited the ability to test this

expected influence in the present investigation. Since such a measure must

fully assess knowledge of symptom presentation without providing cues to

respondents of possible breast cancer symptoms, such a measure is

particularly problematic for survey research methodology.

162

CHAPTER 8

IMPLICATIONS FOR FUTURE RESEARCH

Breast cancer remains primarily a cancer of women. The study of

behavior in relation to breast cancer should be mindful of gender

considerations. In past investigations, information regarding role obligations

and gender specific meanings associated with breast cancer and breast

symptoms appear more to have been thrust upon the investigators than

actively sought as part of the planned research. Future investigations should

centralize gender issues as part of the environment to be studied in relation

to breast symptom discovery. Similarly, providers should explore potential

health risks associated with perceived role-related constraints on health

behavior.

The African American women in this sample have provided a picture of

the contextual variables potentially influencing helpseeking intention in their

lives. These variables are doubtless expressed in unique ways within the

African American community, some of them proving potentially less or more

influential than they might be in other ethnic or racial groups. But the

influences suggested as potentially influential to the timing of helpseeking

resonate with the common experience of the wider population of women as

wives, mothers, grandmothers, aunts, lovers, employees, and selves. In this

respect, the picture drawn by the sample women points to a more general

understanding of the problem of women's behavioral dilemma in response to

163

a discovered breast symptom. Whereas interventions to assist women to

deal with the problem would best be expressed within the cultural experience

in which they live, the theoretical model to guide such interventions can be

envisioned to transcend the dimensions of particular population groups.

The differences in helpseeking intention in relation to current

symptomatology suggests that asymptomatic women may underestimate the

complexity of their helpseeking response. These women may hear education

messages about the need to seek a prompt evaluation and assume a

behavioral response that is less likely once the symptom actually appears.

Additional investigations targeting symptomatic women may help

investigators to learn more about this change in helpseeking intention.

Future studies might particularly target women who describe themselves as

having symptoms as best informants of the intention to helpseek for breast

cancer symptoms, selecting them at random in the community at large and

not just within the health care system.

It has been suggested previously that investigators should focus their

inquiry on helpseeking singularly on the group of women who indicate the

intention to delay helpseeking, since it may be here that the strongest factors

influencing delay are concentrated (Facione 1993a). Since it is difficult to

locate large numbers of these women, perhaps a more practical population

for study would be those women currently monitoring a breast change. In

the current study the percentage of women currently monitoring a breast

symptom was approximately 34%. In a randomly selected sample, this

164

percentage might be considerably less, but these women are likely to be

more in touch with the factors influencing their decision to helpseek than

women who are less immersed in the experience. Separating the

observations these two groups of women in future studies should provide

clarifying insights on the phenomenon of helpseeking.

The issues of access to evaluation and treatment for a discovered

breast symptom cannot be overlooked. Ideally an objective measure of

access to care should be incorporated into future study designs to permit

control of this variable in behavioral studies of helpseeking behavior. No

further studies are necessary to point out the fact that later staged breast

cancer is seen in poorer women. Rather, studies which quantify the relative

influence of perceived or actual access on actual or intended helpseeking

behavior would provide support for those who would argue for changes in

the health care delivery system to equalize access for all persons.

A realistic look at the possibility of racial or cultural bias influencing

helpseeking is warranted in every health care setting where gatekeeper

groups might limit access to health care. Further investigations will be

needed to explore what additions or modifications of the picture will be

needed to best understand the particular cultural experience of Latinas,

Native Americans, Asian Americans, European Americans, and women of

Other cºura groups.

Antonovsky & Hartman (1974) viewed behavioral response in relation

to symptom discovery as patterned by personality trait. Personality models

165

today continue to support this hypothesis (Costa & McCrae, 1992; Caspi &

Moffitt, 1993), suggesting that personality measures might identify women at

risk for delayed helpseeking before breast cancer symptoms occur.

Helpseeking intention might also be examined in relation to the full range of

coping strategies likely to be employed in response to the discovery of a

breast cancer symptom, perhaps guided by a coping model such as that of

Folkman & Lazarus (1988). Personal differences in coping strategies might

be expected to be associated with differences in helpseeking intention.

Further development of the IHELP scale to encompass other possible coping

strategies might improve the variance, validity and reliability of the measure.

A future longitudinal study to trace the continuity between helpseeking

intention and actual helpseeking behavior would add support to this observed

relationship but seems unlikely considering the likely cost of following a large

enough cohort of women until breast symptoms developed in a sufficient

number to examine this relationship. But if the strength of the intention

behavior relationship holds in the case of helpseeking behavior to the degree

that it has been shown in studies of mammography screening and other

health behavior, demonstrating a pre-set psychosocial condition for late

helpseeking and delayed diagnosis could have powerful implications for

screening programs and individual provider visits. The ability to screen all

women for psychologically related risk of delayed helpseeking would be a

particularly important addition to cancer screening. Given the cost of treating

advanced staged breast cancer, such screening would be likely to be cost

166

effective, particularly for women at higher biological risk for the development

of breast cancer.

The development of a valid and reliable tool to identify women least

likely to helpseek immediately for a discovered breast symptom could assist

providers to identify women who might particularly benefit from more frequent

screening or more guidance in relation to helpseeking behavior, breast

cancer symptom presentation, counseling for role related stress, and

information about new treatment options.

167

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Appendix A:

Table A - 1

Meta-Analysis of Studies of Delayed Helpseeking for Self-Discovered BreastCancer Symptoms

Author & Year Sample % of Women Delaying ºReference Published (N) 3 Months or More (N)

Dennis, Gardner, 1975 237 48.0 (114)& Lim

(USA)Wilkinson, et.al. 1979 1784 31.9 (569)

(USA)Adam, et.al. 1980 162 9.9 (16)

(Great Britain)-

Nichols, et.al. 1981 72 40.0 (29)(Great Britain)

- -

MacArthur 1981 145 31.0 (45)& Smith

(Great Britain)Huguley & Brown 1981 2092 20.5 (429)

º

(USA) -Vernon, et:al. 1985 3061 44.0 (1347)

º

(USA)Samet, et.al. 1988 189 , 24.6 (46)

(USA)Freeman 1989 193 56.0 (108)

-

& Wasfie y

(USA)Mor, et.al. 1990 298 32.0 (95)

(USA)-

Rossi, et.al. 1990 189 35.5 (67)(ITALY)

Menon, Teh, & 1992 359 39.0 (140)Chua (Singapore)

Katz, et. al. 1993 296 16.6 (49)(USA)Total Sample N = 9077 Total Delaying 3 Months = 3054

Note. Overall Relative Frequency of 3 Months Delay = 33.6%

Table A - 2

Demographic Descriptors of the Survey Sample (N=352)

Age in Years18–2526-30

31-3536-4041–45

46–50

51-5556–60

61-6565+

Missing

■ l48

42

64

54

35

29

2223134

18

Employment Status nNow EmployedUsually but not

now employedUsually NOT

employedMissing

171

79

8418

Household income n$9,999 or below10,000 to 19,99920,000 to 29,99930,000 to 39,99940,000 to 49,99950,000 or aboveMissing

Cumulative Freq.4890

154

208243272

294318

330

334

352

7%13.6411.93

18.1815.34

9.94

8.24

6.256.53

3.69

1.15

5.11

Cumulative Frequency171

250

334352

Cumulative Frequency

%48.58

22.44

23.865.12

%31.8214.49

13.35

9.665.68

15.91

9.09

Partnered Status

MarriedWidowed

Not partneredSingle/partneredMissing

11251

47

34

2O

56

32

■ l121

17

12079

15

112163

210

244

26432O

352

Cumulative Frequency121

138258337

352

%34.38

4.8234.0922.45

4.26

Cumulative 9%13.6425.57

43.7559.0969.0377.27

83.5290.3493.75

94.89

100.00

Cumulative 9%48.58

71.02

94.89

100.00

Cumulative 9%31.8246.31

59.66

69.3275.OO

90.91

100.00

Cumulative 9%34.38

39.2073.3095.74

100.00

189

Table A-3

|HELP Measure: (Kuder Richardson - 20 = 83)

Instructions: Here is a list of some of the things that a woman might do if shefound a problem in her breast: Circle YES or No to show what you might do:

% True 9%. False Missing1. 34.7 62.5 2.8 Try not to think about it.2. 86.7 10.8 2.5 Get the breast checked immediately by a

doctor.”

3. 9.1 88.4 2.5 Just ignore it.4. 24.7 71.9 3.4 Wait and pray about it.5. 19.3 76.4 4.3 Wait to see if the problem got worse,

then get it checked.6. 86.4 11.6 2.0 If I found a breast lump I think I would

go right in to the doctor.”7. 10.5 86.6 2.8 I'd probably do nothing about a breast

change because you have to die ofsomething.

8. 20.2 76.4 3.4 If I could avoid it, I would not go to thedoctor.

9. 82.1 15.1 2.8 I would be on the phone to the doctor rightaway.”

10. 8.2 88.9 2.8 If I had a problem with my breast I wouldjust refuse to deal with it.

11. 75.0 22.4 2.6 I cannot imagine myself doing anything butcalling the doctor immediately.”

12. 25.6 71.9 2.5 would just hope the breast problem wouldgo away.

13. 18.2 81.5 0.3 If I had a change in my breast, I wouldprobably wait to see if things got worsebefore I had my breast examined by adoctor.

14. All things considered, when I think about whether I would have my breastchange checked by a doctor.17.1% I am not sure that I would have it checked immediately.”78.4% I am very sure that I would have my breast checked

immediately.4.5% (Missing data)

Note: * Indicates reverse coding.

S.

-

º

o

190

Table A - 4

|HELP Measure: Factor Analysis of Items Measuring the Intention to Helpseekin the Event of a Breast Symptom Discovery: Oblique Rotation

EigenValue Percent Cumulative Percent of Variance

Factors: 4.482 32.0 32.01.730 12.4 44.4

1.096 7.8 52.2

Item Number. Factor 1 Factor 2 Factor 3

17 O.791 O.OO4 -0. 10614 O.761 O.088 -0.25516 O.721 -0.063 O.194

10 O.661 -0.054 O. 196

5 O.509 0.359 O.OO71 0.404 0.139 0.234

3 -O.O7O O.745 –0.089

9 0.243 0.669 –0.024

8 -0.012 0.629 0.034

7 0.084 O,535 O. 122

15 -0. 102 0.496 0.35813 –0.073 0.102 O.788

11 –0.028 O.O67 O.776

12 0.319 –0.040 0.610

191

Table A - 5

Factor Analysis of the ACCESS Scale

Factors:

Eigenvalue Percentage Cumulative Percent of Variance

Varimax rotated factor loadings

Items:

FA5FA10FAQFA6FA2FA3FA8B4FA1B3FA7B1

FA4

3.722 28.6 28.61.384 10.6 39.3

1.230 9.5 48.7

Factor 1 Factor 2 Factor 3 Sub-Scale KR-20

O.804 O. 113 0.001

O.739 0.081 -0.026 PROV .65

0.576 O. 156 O.251 (Factor 1)O.477 O.199 O.212

O. 121 O.776 O. 122 COST .70

–0.076 O.737 0.244 (Factor 2)O.219 O.655 O.348

O. 187 0.605 -O.O95 CONV .61

O. 138 -0.004 O.725 (Factor 3)–0.076 O. 115 O.645O.265 O. 193 O.634

O.264 0.239 O.546

O.291 0.010 O.287

Table A - 6

Reported Behavior in Relation to a Current Worrisome Breast Symptom.

Behavior True

n(%)

The change is a lump: 34 (27.9)Have had prior breast changes: 31 (25.4)Has been examined by a Dr/Ns: 62 (50.8)Had had a biopsy: 21 (17.2)Concerned it might be cancer: 33 (27.0)Discussed breast change

with a friend or relative: 31 (25.4)

False

n(%)

73 (59.8)77 (63.1)50 (41.0)82 (67.2)75 (61.5)

72 (59.0)

Missingn(%)

15 (12.3)14 (11.5)10 (8.2)19 (15.6)14 (11.5)

19 (15.6)

s

193

Appendix B - 1:

Letter of Invitation to Participate in Focus Group Session

Date:

Ms.

| and my colleague, Professor Marylin Dodd, PhD, are nurse researchers atthe University of California, San Francisco. The American Cancer Society andthe National Institute of Health have both provided funding to help support astudy we are beginning. The study will increase understanding of howwomen decide to have breast examinations and what they think about breastcancer. Our study is dedicated especially to African American womenbecause of the need for today's health care research to clearly and correctlypresent the perspectives of both women and persons of color. The womenwho will be asked to participate in this particular study will be communitywomen like yourself, not breast cancer patients.

Barbara Galloway-Lee,MSW, a friend and colleague from the San Mateo Unitof the American Cancer Society, suggested that we contact you as a womanwho might be interested in participating in one of several discussion groupswe will be holding as a first phase of the study. Each discussion groupwould be small, only three or four women and a discussion leader. Themeeting would be arranged near your home at a convenient time. Yourparticipation would be strictly voluntary, and carries no obligation forcontinued involvement in the study.

Because this research is about humans, women humans in particular, aconsent form explaining your participation is also included to inform youcompletely and help you decide if you would like to participate in this firstphase of the study. I would welcome hearing from you at (415) 697-0144,and we will set up a convenient time for a group meeting.

Most sincerely,

Noreen FacionePhD Candidate

Department of Physiological NursingUniversity of California, San Francisco

º

194

Appendix B - 2: Focus Group Narrative Introduction

I'd like to introduce myself to all of you. My name is Noreen Facione,and I am a nurse researcher from the University of California, San Francisco.As I hope you all know from the copy of the consent form I mailed with yourinvitation letter, this focus group meeting is part of the first phase of aresearch project about how women decide to go to have a breastexamination. And the women who will participate in the second phase of thestudy will all be African American women. I'm sure you know that breastcancer is becoming more common in all groups of women. Because of thisincreasing threat we have chosen to study this very critical problem inwomen's health. I guess I could have chosen to work on a common malehealth problem, but ... this is another example of the year of the woman.

You may be wondering why a white woman would be involved in astudy about black women, so let me explain my interest. Black women haveless chance of getting breast cancer than white women, but when they getbreast cancer, they have a lower chance of survival than any other racialgroup. That is the reason why this study begins by focusing on AfricanAmericans. Future studies will take what we learn from this study and extendit to other groups of women.

I have a second reason for being particularly interested in the health ofAfrican Americans. My family has four African American members. I havebeen concerned for a long time that fewer research dollars have been spenton African Americans. So I'm especially glad to be involved in this study.

Our purpose tonight is to make sure that when the second phase ofthe study gets done, it asks all the right questions so that the women in thestudy get to tell their real story. The study will be a questionnaire. Throughour discussion tonight I hope to learn what questions need to be in thatquestionnaire.

We are going to be on a first name basis. I've made name cards forthose of us who are meeting for the first time. I will be tape recording ourdiscussion. This is necessary because I want to be sure to benefit fromeverything all of you have to say. After the session all names will be removedfrom the tape to be sure to protect your privacy. I will also be taking somenotes because I can't rely on the tape alone, in case it malfunctions. Butplease try not to speak at the same time as someone else because the tapewill not be able to record your comments, and we don't want to lose any ofyour valuable ideas.

Are there any questions? This is strictly voluntary, so if there are noquestions and everyone wishes to continue please sign a copy of the consentform. If you would like to know more about how the study progresses, leaveme a note on this short survey I am giving to each of you to fill out. Therestrooms are around to the left. If you have to leave for some reason, justgo ahead and leave quietly, so there is no interruption in the discussion. Letme say thanks in advance for participating.

195

Appendix B - 3:

Questions Guiding Focus Group Sessions(Ask questions in whatever order seems best for flow of discussion)

-

1. I'd like us to start this discussion by taking a moment for eachof us to remember back to some time in our adult lives when

we've been sick. Using that memory, I'd like us to talk a littleabout what it is like to deal with being sick. What kind of thingsdo we do? How do we decide whether we need to see a doctoror nurse?

2. Now another little exercise. I'd like to have you imagine for amoment that you have just discovered a change in your breastthat worries you. To make this more real, maybe we could allmentally put ourselves in the place where we sometimes checkour breasts. What I'd like us to talk about now are the feelingsthat we would have all around that kind of a discovery? Ifyou've had a real experience with a breast change in the pastyou can use that experience to get in touch with what your realfeelings were, but there's no reason you have to share any pastexperiences.

3. We've talked about the feelings we'd have about finding abreast change. Now let's talk about what we think we might do

-

if we discovered such a change.

4. Take time out to discuss breast changes, if this issue arises.

5. What kinds of reasons might a woman have for waiting awhilebefore having the breast checked by a nurse or doctor?

6. What kinds of reasons might a woman have for having thebreast checked by a nurse or doctor right away?

7. How would the opinions of others affect your decision on what*

to do if you discovered a change in your breast that worried-

you?

8. ls there anything (else) about being a wife or a mother or alover, for instance, that would influence your decision aboutwhether to get the breast change checked?

9. Would the cost be a factor in your decision about whether tohave your breast checked?

196

Appendix B - 4: CHR Approved Consent Form for Focus Group Participation

SEEKING EXAMINATIONS FOR BREAST SYMPTOMSUNIVERSITY OF CALIFORNIA, SAN FRANCISCO

CONSENT TO BE A RESEARCH PARTICIPANTIN A FOCUS GROUP SESSION

Purpose of the Study: Marylin Dodd, RN, PhD and Noreen Facione, RN,MSN at the University of California, San Francisco School of Nursing havedeveloped this study to learn about how women decide when to get a breastexamination and what difficulties they might have obtaining that examination.They want to use this information to write a survey questionnaire of women'sthoughts, opinions, and feelings about getting breast examinations and aboutbreast CanCer.

Procedures: If I agree to participate in this study, the following will happen:I will participate in a discussion with three to four other women. In thediscussion I and the other women will discuss our thoughts, opinions andfeelings about health care check-ups, breast examinations, the difficultiesassociated with getting health care examinations, our feelings about breastcancer, and any other related issues that women in the group think should beincluded in the discussion. Participation in the first discussion meeting willtake about two hours. A discussion leader will guide the discussion byasking general questions, so I will not have to do any work to lead thediscussion. I understand that I don't have to talk at all if I decide I don't want

to. I will not be required to respond to any particular question, and if I wishto stop participating in the discussion I can leave at any time.

After the discussion ideas are used to write the questionnaire I will be askedwhat I think about the questionnaire, whether its easy to understand, andwhether it includes all the ideas that were talked about in the discussion

group. I can give my opinions in a second meeting of my discussion groupor I can give them to Ms. Noreen Facione in a telephone conversation. Mycomments will help make sure the questionnaire really asks the questions ourgroup of women thought were important.

Risks: Although none of the discussion questions are intended to make meuncomfortable or embarrassed, since the discussion will be about breastexaminations, it is possible that I might be uncomfortable with some part ofthe discussion.

Benefits: The discussion leader is knowledgeable about breast examinationsand mammography examinations. If I wish, she will provide me withinformation about how to examine my own breasts, guidelines for when

º*

197

should obtain a professional breast examination and information about lowcost mammography examinations, but only if I want her to provide thisinformation.

Alternatives: If I choose not to participate in this study, I can still receiveinformation about breast self examination, guidelines for when I should obtaina professional breast examination and information about where to obtain lowcost mammogram, but only if I desire this information. I would not need toparticipate in any discussion groups.

Costs: I will not be charged anything for any part of the discussion meeting.Coffee, tea or refreshments during the discussion group will be paid for bythe nurse researcher. The information or teaching about breast examinationsis free of charge and so are any information booklets I might want.

Reimbursement: There will be a reimbursement of $15.00 for each womanparticipating in this study.

Questions: This study has been explained to me by Ms. Noreen Facione orand my questions have been answered. If I have

other questions about the study, I may call Ms. Noreen Facione at (415) 697O144, or Dr. Marylin Dodd at (415) 476-4320, Monday through Friday, 9:00a.m. to 5:00 p.m. or at

. If for some reason I do not want to call Ms.

Facione or Dr. Dodd, I may contact the Committee on Human Research,which is concerned with the protection of human volunteers in researchprojects. I may reach the committee office between 8:00 a.m. and 5:00 p.m.by calling (415) 476-1814 or by writing the Committee on Human Research,P. O. Box 0616, University of California, San Francisco, CA, 94143.

Consent: I have been given copies of this consent form and the ExperimentalSubjects' Bill of Rights to keep.PARTICIPATION IN RESEARCH IS VOLUNTARY. I have the right to refuse toparticipate in this study or to stop participating in the at any time without anynegative consequences.

If I wish to participate I should sign below:

Date Participant's-

Signature

Participant's Telephone Person Obtaining Consent3-31-93

198

Appendix B - 5: CHR Approved Consent Form for Survey Participation

PARTICIPANT'S CONSENT FORM

§ § §The African American Women's

Breast Health Survey-

§ $ §

The questions in this survey were developed by Marylin Dodd, RN,PhD and Noreen Facione, RN, MSN at the University of California, SanFrancisco School of Nursing with the help and guidance of women in the SanFrancisco Bay Area Black community. The survey asks questions about: 1)how women see themselves in terms of their family roles, religious, beliefsand, health needs, 2) how women decide whether to go to the doctor forgeneral health problems and breast examinations, 3) difficulties women mighthave about going to the doctor, and 4) thoughts and feelings women haveabout breast cancer.

If you decide to participate in this survey, the following will happen:You will be asked to read and answer the questions in the survey

questionnaire. If, for some reason you choose not to answer a particularquestion, you may leave it blank. It will take about 45 minutes to completethe survey questionnaire. Although none of the survey questions areintended to make you uncomfortable or embarrassed, since the survey isabout breast examinations, it is possible that you might be uncomfortablewith some of the questions. After you complete the survey you willimmediately be given $10.00 cash for your time and effort contributed tocomplete the questionnaire. If you wish, you can receive printed informationabout how to examine your own breasts, guidelines for when you shouldobtain a professional breast examination and information about low costmammograms. You will be able to receive this information whether youagreed to participate in this survey or not. There is no cost to you forparticipating in the study or for information about breast health examinations.

You have the right to refuse to participate in this study or to stopparticipating in the at any time without any negative consequences. Toprotect your privacy, this consent form it will be kept in a locked file andnever connected with the answers you write on the survey questionnaire.Your answers will be counted with the answers of the other women who

participate in the survey, and this information will be used to help designbreast health projects that meet the needs of African American women.Please ask any questions you might still have to help you decide whether youwould like to participate by completing the survey questionnaire.

199

Appendix B - 5 (Continued):

You have been given a copy of this consent form and the ExperimentalSubjects' Bill of Rights to keep. If you would like to participate in thisstudy by completing the survey questionnaire please show your consentby signing here:

Date Participant's Signature

Participant's Telephone Person Obtaining Consent8-1-93

2OO

Appendix B - 5 (Continued):

UNIVERSITY OF CALIFORNIA, SAN FRANCISCO

EXPERIMENTAL SUBJECT’S

BILL OF RIGHTS

The rights below are the rights of every person who is asked to be in aresearch study. As an experimental subject I have the following rights:

1) To be told what the study is trying to find out,2) To be told what will happen to me and whether any of the

procedures, drugs, or devices is different from what would beused in standard practice,

3) To be told about the frequent and/or important risks, side effects, ordiscomforts of the things that will happen to me for researchpurposes,

4) To be told if I can expect any benefit from participating, and, if so,what the benefit might be,

5) To be told of the other choices I have and how they may be betteror worse than being in the study,

6) To be allowed to ask any questions concerning the study bothbefore agreeing to be involved and during the course of thestudy,

7) To be told what sort of medical treatment is available if anycomplications arise,

8) To refuse to participate at all, or to change my mind aboutparticipation after the study is started. This decision will notaffect my right to receive the care I would receive if I were not inthe study,

9) To receive a copy of the signed and dated consent form,10) To be free of pressure when considering whether I wish to agree to

be in the study.

If I have other questions: I may call Ms. Noreen Facione at (415) 697-0144,or Dr. Marylin Dodd at (415) 476-4320, Monday through Friday, 9:00 a.m. to5:00 p.m. or at

-

I may also contact the Committee on Human Research, which is concernedwith the protection of human volunteers in research projects. I may reach thecommittee office between 8:00 a.m. and 5:00 p.m. by calling (415) 476-1814or by writing: Committee on Human Research, P. O. Box 0962

University of California, San FranciscoSan Francisco, CA, 94143.

■

201

Appendix B - 6:

Script for Research Assistants to Introduce Survey Study to Leaders ofCommunity Organizations

Ms./Dr./Mr.

I and my colleagues, Noreen Facione, RN, MS, Professor Marylin Dodd, PhD,are researchers at the University of California, San Francisco. The AmericanCancer Society and the National Institute of Health have both providedfunding to help support a study to increase understanding of how womendecide to have breast examinations and what they think about breast cancer.I would like to tell you all about this study and ask you whether we mightinvite women members of your church (or women's group, school, worksetting) to participate in the study. Please feel free to interrupt me to ask anyquestions you wish. Our study is dedicated especially to African Americanwomen. This is because African American women are diagnosed at a laterstage of breast cancer and their survival of breast cancer is poorer than othergroups of women. We have undertaken this study because of the need forthis breast cancer study to clearly and correctly represent the perspectives ofAfrican American women themselves.

In the first part of the study which is already complete, African Americanwomen from the Bay area community collaborated with us to design a surveyquestionnaire. (Show the questionnaire for review). This is the questionnairethat we will use for the second part of the study. We would like to ask thewomen in your church (or women's group, school, work setting) if they wouldlike to participate in the second phase of this study by completing thequestionnaire. First they will receive a consent form (show consent form andexperimental subjects Bill of Rights), and questions they have about the studywill be answered by myself or one of the other members of the study team. Ifa woman chooses to participate she will complete the questionnaire and begiven an immediate $10.00 cash reimbursement for her participation. Womenmay refuse to participate or change their mind at any time. All the women wecontact will be offered printed materials from the American Cancer society,but may refuse those as well. The women we contact will be treated with theutmost courtesy at all times by our study group. If any type of problem arisesor if you would like to withdraw your permission to contact women throughthis organization you may contact Noreen Facione from 9 am to 5 pm at(415) 697-0144 or Marylin Dodd at (415) 476-4320. Or if you wish you maycontact the Committee on Human Research at UCSF (415) 476-1814. (Showwhere these numbers appear on the consent for and provide copy to beretained at the setting).

2O2

Appendix B - 6 Continued:

ls there a possibility that the women in your organization might like to hearabout this study and decide whether they might like to participate?

2.

(if No: Thank the contact person, leave a card with contact information in the-

event there is reconsideration or the need for further information about the-

study.)

(If Yes.) Ask the following questions as appropriate:ls there someone else that organizes meetings of the women in your

church (or women's group, school, work setting) who we should work with tocontact women about the study?

ls there a planned meeting where we could tell women about thestudy?

ls there a newsletter (newsletter ads will appear as the flyer contentbelow)?

May we post information flyers in a location you feel appropriate?

Would you like to be the person who women contact if they want to hearmore about the study, or should it be a member of this study team? (Flyer.attached).

(Record in writing for other team members the exact method of contactauthorized by the organization member.)

Contacts will begin.....(clarify approximate or actual date of planned contactto potential participants). Thank you for facilitating our contacting womenwho might potentially like to participate in this study. Would you like a

º

summary of the study results? (Record Yes or No and name of person to f

whom the summary should be directed.)

…--

203

Appendix B - 7:

Posted Flyer to Advertise the Study

§ UCSF #

African American Women's

Breast Health Survey

A study planned especially to hear the opinions ofAfrican American women regarding their health care andtheir approach to breast health is recruiting adult, AfricanAmerican women participants now! The results of thestudy will be used to design a breast cancer educationand screening program with particular attention to theneeds of African American women. We would like you tobe one of the women who contributes to this study.

The questionnaire for this study was developed withthe help of African American women in your community.If you decide to participate in the study, you will be paidan immediate $10.00 cash for the 30 - 45 minutes it willtake you to fill out the questionnaire. There are no otherobligations.

If you would like to hear more about this study:Contact Noreen Facione at (415) 697-0144. Participationis totally voluntary, and you can change your mind at anytime.

This project is funded in part by the American Cancer Societyand by the National Center for Nursing Research.

204

Appendix C. Survey Questionnaire

$ $ §

The African American Women’s

Breast Health Survey

§ $ $

Begin Here:

If you describe yourself as Black or AfricanAmerican, are a woman who is at least eighteenyears of age, and have read and signed aconsent form to be a participant in this study,please read each of the following questionscarefully, and answer what is most true for youpersonally. There are no right or wronganswers. What's important is how youpersonally think or feel about each question.

Please Continue

205

THERE IS NO NEED TO WRITE YOUR NAME ANYWHERE ON THIS SURVEY.

The following information will help us to understand something about the group ofwomen who took part in this research. Please ignore these small coding numbers. ,

1. I would describe myself as a Black (or an African American) woman.(Circle ONE) TRUE FALSE (D1)

2. My age is years. [D2,

3. I was born in (City), (State, [D34)

(Country). (DS)

4. Circle the highest grade in school completed:Grade School High School College Grad School

1 2 3 4 5 6 7 8 9 10 1 1 12 1 2 3 4 1 2 3 4 [D6,

5. I am currently: (Mark an X)MarriedWidowed

Single, without a partnerSingle, with a partner [Dr.

6 . I am: (Mark an X)Currently employed outside the home.Usually employed outside the home, but not currently.Usually not employed outside the home. (D8,

7. How many adults (including yourself) currently live in your household?

8. How many children currently live in your household? [D10

9. Our household income is: (Mark an X)Less than $9,999 a year.$10,000 to $19,999 a year.$20,000 to $29,999 a year.$30,000 to $39,999 a year.$40,000 to $49,999 a year.$50,000 to $59,999 a year.More than $60,000 a year. (D11)

=10. People in my family ask me for advice about their health.(Circle ONE) TRUE FALSE [D12]

* Please go on to the next page $

2O6

HEALTH OPINIONS: Circle AGREE or DISAGREE to show your opinion. Even ifyou don't completely agree or disagree with a statement, choose the one answer thatComes the closest to what you believe.

~….CircleYour Response.…

Except for serious illness, it's generally better AGREE DISAGREEto take care of your own health than to seek ■ ki,

professional help.

It is better to rely on the judgements of doctors AGREE DISAGREE(who are experts) than to rely on "common sense" ■ k2.

in taking care of your own body.

Clinics and hospitals are good places to go for AGREE DISAGREEhelp since it's best for medical experts to take ■ cº

responsibility for health Care.

Learning how to cure some of your illness without AGREE DISAGREEcontacting a physician is a good idea. (K4]

It's almost always better to seek professional AGREE DISAGREEhelp than to try to treat yourself. ■ º

Learning how to cure some of your illness AGREE DISAGREEwithout contacting a physician may create (K6)

more harm than good.

Recovery is usually quicker under the care AGREE DISAGREEof a doctor or nurse than when patients ■ ky;

take care of themselves.

If it costs the same, I'd rather have a AGREE DISAGREEdoctor or nurse give me treatment than [ke]

to do the same treatment myself.

It is better to rely less on physicians AGREE DISAGREEand more on your own common sense when ■ kg)

it comes to caring for your body.

* Please go on to the next page &

-■ -■ -■ -**·

*■|×·

*

*■ ae■■

·-----**…----…-■■ *■■

■● *-----·*aeºº,i!

2O7

RELIGIOUS PRACTICES: Mark an "X" on the line beside the answer that is mostCorrect for you personally. (Choose One)

How religious would you say you are? not at allnot very much

_ somewhat_ pretty much

very much (R1)

To what extent are you conscious of not at allto a small extent

to a moderate extent

to a large extent

some religious goal or purpose in lifewhich serves to give direction to your life?

to a very large extent [R2)

How often do you study the Bible, or other ■ leVer

religious literature privately? seldomoccasionallyabout once a week

daily [R3]

Other than at mealtime, how often several times per daydo you pray to God privately? daily

occasionallySeldom

neVer [R]

How often do you experience or feel God's neVer

approval for some good act you seldomhave done? occasionally

often

very often ■ R5,

How often do you experience God's ■ leVer

disapproval for some undesirable act you seldomhave done? occasionally

often

very often [R&

* Please go on to the next page &

208

RELIGIOUS PRACTICES (Continued): (Choose One)

On the average, how often have you neVer sattended religious worship services a few times a yearSunday morning and/or other days) Once or twice a month 1.

during the last year? weekly, or almost weekly*

more than Once a week [Rn

s

How large a part of your income do none

you donate per year to a church or areligious organization?

a very small part of my incomea small part of my incomea medium part of my incomea large part of my income [Rel s

... ."

How often do you serve a church or neVe■

other religious organization in Sunday a few times a yearschool teaching, church project Once Or twice a monthleadership, or other responsibilities? weekly or almost weekly

more than once a week tRol

How would you describe the nature no relationshipof your relationship to God? distant relationship

between distant and close º

relationship s

close relationship-

very close relationship [Rio,

When you are tempted to do very oftensomething wrong, how often do you oftenask God for strength to do it right? sometimes º

Seldom

neVer [R11)

When you have decisions to make, in very oftenyour everyday life, how often do you often *

ask yourself what God would want sometimesyou to do, or ask God for help seldomin making the decision? neVer ■ R12)

* Please go on to the next page $

l

l

209

Listed below are a number of statements concerning PERSONAL ATTITUDES. Readeach item, and decide whether the statement is true or false for you personally.(Circle One)

True False It is sometimes hard for me to go on with my workif I am not encouraged. [M1)

True False | sometimes feel resentful when I don't get my way. (M2)

True False On a few occasions, I have given up on doing somethingbecause I thought too little of my ability. (M3)

True False There have been times when I felt like rebelling againstpeople in authority even though I knew they were right. [M4]

True False No matter who I'm talking to, I'm always a good listener.

True False There have been occasions when I took advantage ofSOmeOne. [M6,

True False I am always willing to admit it when I make a mistake.

True False | sometimes try to get even, rather than forgive and forget.

Tru False I am always courteous, even to people who are disagreeable.

True False I have never been annoyed when people expressed ideas verydifferent from my own. [M10

True False There have been times when I was quite jealous of thegood fortune of another. IM11)

True False I am sometimes irritated by people who ask favors of me.

True False I have never deliberately said something that hurt someone'sfeelings. [M13)

* Please go on to the next page &

i

210

These items are statements about your PERSONAL BELIEFS, so there are no rightOr wrong answers. Circle AGREE or DISAGREE to show which answer comes theclosest to what you believe. Please try to answer even if you do not completelyagree or disagree. (Circle One)

Often I feel that no matter what I do, if AGREE DISAGREE [.I'm going to get sick, I will get sick. [c1) -

It seems that my health is greatly influenced AGREE DISAGREE ºby accidental happenings. ■ cal

When I am sick, I just have to let nature AGREE DISAGREErun its course. (C3) -

******------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------ .

If its meant to be, I will stay healthy. AGREE DISAGREE

When I stay healthy, I am just plain lucky. AGREE DISAGREE

Even when I take care of my self, its easy AGREE DISAGREEto get sick. (C6,

{T§ Complete the next 4 questions only if you are currently employed outside the ºhome. If you are not currently employed outside the home, you may go on to the º

next page. (CHECK ONE)-

1. Finding time to go to the doctor would depend on whether I could get off work.

Strongly Agree Agree Disagree Strongly Disagree *

2. When I get sick I always say, "I can't afford to be home sick, so I'm not sick!" *

Strongly Agree Agree Disagree Strongly Disagree-

3. My work would not interfere with a doctor's appointment.

Strongly Agree Agree Disagree Strongly Disagree *

4. I probably wouldn't take time off from work just to get my breasts checked.

Strongly Agree Agree Disagree Strongly Disagree (E4)

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211

GETTING TO THE DOCTOR. Draw a circle around TRUE or FALSE to Show which ismost correct for you. (Circle One)

Transportation to the doctor is a TRUE FALSE

big problem for me. IFA1)

I have health insurance or MediCal TRUE FALSEto help pay for my doctor visits. (FA2)

Its often difficult to see a doctor TRUE FALSEwhen I'm able to go. (B1)

| usually don't have to make any special TRUE FALSEarrangements in order to go to the doctor. (B2)

The doctors I need to see are located in TRUE FALSEinconvenient places. (B3)

I don't worry much about the cost when TRUE FALSEI think about going to the doctor. (B4)

I don't go to the doctor because I don't TRUE FALSEhave health insurance. IfA9,

The place where I go to see the doctor is TRUE FALSEalways crowded. (FAA)

| have a doctor | feel comfortable with. TRUE FALSE

| get my health care in a well-equiped facility. TRUE FALSE

The emergency room is the only place I can find TRUE FALSEa doctor when I need One. (FAn

I don't go to the doctor because I don't have TRUE FALSEthe money. (FAB)

I don't receive much personal attention when TRUE FALSE

I go to see the doctor. ".

I know I can do a lot to keep myself TRUE FALSEfrom getting sick. !crl

If it's meant to be, I will stay healthy. TRUE FALSE ICS)

* Please go on to the next page &

212

PERCEPTIONS: Mark an "X" in the space following the word that best tells how youfeel about each of the following statements.

Black women have fewer options for health care than white women.

Strongly Agree Agree Disagree Strongly Disagree [Rn)

I haven't always gotten the kind of courtesies I should have in a white doctor's office.

Strongly Agree Agree Disagree Strongly Disagree (R21

Black women experience negative attitudes when they go to white doctor's offices.

Strongly Agree Agree Disagree_ Strongly Disagree toil

Doctors treat black women and white women the same.

Strongly Agree Agree Disagree_ Strongly Disagree (G2)

Racism is a problem in my life.

Strongly Agree Agree Disagree Strongly Disagree (G3)

Sometimes, in a white doctor's office, if you are black its as if you don't belong there.

Strongly Agree Agree Disagree Strongly Disagree (G4)

Racial discrimination in a doctor's office is common.

Strongly Agree Agree Disagree Strongly Disagree IG5)

In most hospitals, black women and white women get the same kind of care.

Strongly Agree Agree Disagree Strongly Disagree (G6)

Doctors and nurses act the same way to white women and black women.

Strongly Agree Agree Disagree Strongly Disagree IG7,

If a black woman comes to a doctor's office its assumed that she's on welfare.

Strongly Agree Agree Disagree Strongly Disagree (G6

I am not affected by racial discrimination.

Strongly Agree Agree Disagree Strongly Disagree [Go]

Black women can receive the care they want equally as white women.

Strongly Agree Agree Disagree Strongly Disagree (G10)

* Please go on to the next page $

: *-

º

* *- -

a

--- -"

213

SELF CARE HABITS: Mark an "X" in the space following the word that best tells howyou feel about each of the following statements.

If the home remedies I'm using are not working, then I go to the doctor.

Strongly Agree Agree Disagree Strongly Disagree [H1]

I really have to be hurting before I go to the doctor.

Strongly Agree Agree Disagree Strongly Disagree [H2]

Going to the doctor regularly is a normal part of how I take care of myself.

Strongly Agree Agree Disagree Strongly Disagree IH3)

I go to the doctor early when I'm sick so I don't get worse.

Strongly Agree Agree Disagree Strongly Disagree [H4)

I only see a doctor when I'm seriously sick.

Strongly Agree Agree Disagree Strongly Disagree [H5)

I always go to the doctor when I'm seriously sick.

Strongly Agree Agree Disagree Strongly Disagree (H6)

I've been seriously sick this year, but I haven't seen a doctor or gone to a clinic.

Strongly Agree Agree Disagree Strongly Disagree (Hn

I usually ignore my sickness for awhile to see if it goes away.

Strongly Agree Agree Disagree Strongly Disagree [H6)

I get a check-up even when I'm not sick, just to make sure I'm okay.

Strongly Agree Agree Disagree Strongly Disagree ■ ºo)

My doctor examines my breasts every year or two to check for breast cancer.

Strongly Agree Agree Disagree Strongly Disagree [H10)

If I noticed a problem in one of my breasts I would probably wait awhile to have itchecked because I always wait awhile for everything.

Strongly Agree Agree Disagree Strongly Disagree [H11)

I get a PAP smear every year or two to protect myself from cervical cancer.

Strongly Agree Agree Disagree Strongly Disagree [H12]

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:

--

214

BREAST CHANGES: Here is a list of possible changes you might notice in your breast.Which of the changes would make you decide to get your breast checked right away by adoctor or nurse?: (Circle One)

Yes No Persistent itching in my breast tril

Yes No A new lump I never had before trz.

Yes No Constant pain in my breast [Yo!

Yes No A hot, reddened area on my breast [Y4]

Yes No Darkening of my skin color on a part of my breast ■ ys)

Yes No A little blood coming from my nipple [we]

Yes No A thickened spot in the skin of my breast [Yn

Yes No One of my nipples beginning to sink inward Tre

Yes No A sore or a scab on my nipple that lasted a few weeks [Yo!

Yes No A little clear drainage came from my nipple Trio)

Yes No A change in the shape of one of my breasts [Y11,

Yes No A lump I knew I had in my breast was becoming bigger [Y12,

Yes No A dimpling in of the skin of one of my breasts [Y13]

Yes No One of my breasts was getting larger Triº,

If I had one of these changes in my breast, I would Pº wait to see if things gotworse before I had my breast examined by a doctor. (Check One) [1]

True False

One reason that I might wait for awhile before having a breast change checked is thatI am always having breast changes that I'm not sure about. [12]

True False

; have a regular doctor that I would feel comfortable talking to about a problem in myreaSt. [FAtol

True False

When I have my breasts examined, I would rather go to a female doctor. IFA11]

True False

When I have my breasts examined, I would rather go to a Black doctor. FA12,

True False

* Please go on to the next page &

--

ss

*.

215

Imagine for a moment that you have just noticed a problem in one of your breasts.Consider each of the statements below carefully. Mark an "X" to show what you thinkwould happen if you waited awhile rather than have the change in your breast examinedby a doctor.

Definitely : Probably Probably DefinitelyYes i Yes i No i No

I would avoid unpleasant medical procedures.-

(P11

I would be more likely to need major surgery.- [P21

I would avoid undesirable interactions with a physician.- - -

IP3)

The breast problem would go away. [P4)

I would avoid an undesirable diagnosis.- -

(P5)

I would minimize the need for more involved treatment | | | | Pe.

There would be an increased chance of losing my breast.- -

(Pn

I would avoid a major disruption to my life in general.- - -

r

The problem would have time to grow or spread.- - -

; "

I would avoid upsetting my family. : Piq

I would save money.

I might avoid having a surgery.

I would avoid looking like a hypochondriac.---------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

I would convince myself that it was nothing serious.

Nothing would happen.

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216

This part of the questionnaire asks you to describe your FEELINGS. Imagine for a momentthat you have just discovered a problem in your breast. Beside each "feeling word" thereis a line between "extremely" and "not at all." Extremely means that you would feel thefeeling very, very strongly. Not at all means that you would not have the feeling at all.

Imagine for a moment that you are bathing and you notice that there is a definite changein one of your breasts. Discovering the change in my breast would make me feel:

(Mark an "X" somewhere on the line to show how you think you would feel.)

Angry: Extremely Not at all [T11

Surprised: Extremely Not at all [72]

Annoyed: Extremely Not at all Ital

Embarrassed: Extremely Not at all IT4)

Ashamed: Extremely Not at all (T5)

Panicky: Extremely Not at all [T6]

Afraid: Extremely Not at all [T]

Shocked: Extremely Not at all [TS

Anxious: Extremely Not at all ITQ)

Worried: Extremely Not at all [T10]

Hopeless: Extremely Not at all ■ till

Sad: Extremely Not at all IT12]

Concerned: Extremely Not at all ■ tial

Depressed: Extremely Not at all [Ti4]

* Please go on to the next page $

------

■

217

How do you think you would FEEL if you discovered a problem in one of your breasts:(Circle One)

TRUE FALSE I would feel mostly angry that this had happened to me. *

I would feel ashamed that I did something to make theTRUE FALSE breast problem happen. ...

TRUE FALSE I would be embarrassed to get the breast problem checked. *

TRUE FALSE I would be so depressed, I would probably do nothing about it. ...

TRUE FALSE I would be more afraid if I didn't go to the doctor. *.

Thinking about any kind of serious illness, especially one like cancer,TRUE FALSE always makes me feel afraid. . . .

TRUE FALSE I would never panic. *

TRUE FALSE I would feel anxious until I found out if it was serious. wn.

I would be happier if I didn't know whether the change in my breastTRUE FALSE was breast cancer. (A8)

TRUE FALSE I'd be afraid because this might mean I have breast cancer. [A2]

TRUE FALSE I'd be afraid because I might need surgery on my breast. [A10.

I would rather live in fear of having missed a breast cancer ratherTRUE FALSE than facing the fear of having a breast removed. (A11)

TRUE FALSE I'd be afraid that this breast problem might threaten my life. A12,

TRUE FALSE I would not be afraid of diagnostic tests or medical treatments. ...

I'd be afraid that I would not be able to take care of all myTRUE FALSE responsibilities if I get ill myself. (A13)

I would be afraid if I didn't go to the doctor immediately it wouldTRUE FALSE get worse. -"

TRUE FALSE I would be afraid I might lose my breast. *

TRUE FALSE I would mostly be afraid of the pain I might experience. --

TRUE FALSE I don't think I would be afraid if I discovered a breast problem. ...

* Please go on to the next page &

218

Do you have any of the health problems listed below?(Mark an X on the line to show that the problem applies to you personally.)

A Blood Pressure Problem Arthritis (Crnº-2,

A Nervous Condition A Diabetes/Sugar Problem (Crnº-4)

A Stomach Problem A Heart Problem ICmé-6,

A GYN/Female Problem A Cancer Problem (Crny-8)

A Lung/Breathing Problem A Bladder Problem ■ cro-tol

Are you pregnant at this time? Yes No (Cm11)

If you are troubled by some other health problem not mentioned and would like to name

it, what is it? (Cºn12.

§ Complete the next group of questions ONLY IF YOU ARE RESPONSIBLE FORTAKING CARE OF CHILDREN CURRENTLY LIVING INSIDE YOUR HOME. If you are notcurrently responsible for children living in your home, you may go on to the next page.

Which is most correct for you personally?(Circle One)

TRUE FALSE

TRUE FALSE

TRUE FALSE

TRUE FALSE

TRUE FALSE

TRUE FALSE

TRUE FALSE

| usually have to take the children with me when I go to the doctor.(FC1)

| usually take the children to the doctor right away when they'resick, but for myself, I usually wait. (Srij

I don't go to the doctor because there is no one to watch thechildren. [Fe2,

The children are not a problem when I have to go to the doctor. ra.

I am usually too busy with my children to go to the doctor or theclinic when I'm sick. [Fowl

Even though I have lots of people to take care of, I would not delayhaving my own breasts checked. [sº]

I would probably wait a while before having my breast examinedbecause I would need to make sure that the people who depend onme were taken care of first. [80]

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219

Here is a list of some of the things that a woman might do if she found a problem in her

YES

YES

YES

YES

YES

YES

YES

NO Try not to think about it. ■ º

NO Check it periodically myself to make sure it didn't change. ■ º

NO Get the breast checked immediately by a doctor. [6]

NO Try taking medication for it. ■ el

NO Just ignore it. [In

NO Wait and pray about it. [16]

NO Wait to see if the problem got worse, then get it checked. ■ ol

$ if you do not have a spouse or partner at the moment, you can go on to the nextpage. If you do currently have a spouse or partner. (Circle One)

TRUE

TRUE

TRUE

TRUE

TRUE

TRUE

TRUE

FALSE

FALSE

FALSE

FALSE

FALSE

FALSE

FALSE

If I discovered a change in my breast that worried me, myspouse/partner would want me to have my breast checkedimmediately. [Sp1)

My spouse/partner probably wouldn't want me to have my breastchecked. (Spal

I would not share my worry about my breast with myspouse/partner. (spal

I would probably have to put off having my breast checked becauseof my spouse/partner. [Sp4)

What my spouse/partner wanted would not affect what I decided todo about getting my breast checked. [Spé,

I would probably have my breasts examined sooner because of myspouse/partner. [Spé,

I would be afraid of losing my spouse/partner if I had a problem inmy breast. [Spy]

* Please go on to the next page &

220

How would THE PEOPLE IN YOUR LIFE be important if you thought you might have

TRUE

TRUE

TRUE

TRUE

TRUE

TRUE

TRUE

TRUE

TRUE

TRUE

TRUE

TRUE

TRUE

TRUE

TRUE

FALSE

FALSE

FALSE

FALSE

FALSE

FALSE

FALSE

FALSE

FALSE

FALSE

FALSE

FALSE

FALSE

FALSE

FALSE

I would probably talk about the breast change with someone closeto me before I decided whether to have it examined by a doctor.

If I mentioned a problem with my breast to the person closest to me,this person would probably say "Don't hesitate, go have it checked."

I would talk with my girl friends about my breast problem and theywould help me decide what to do.

| listen to the advise of others about whether I need to go to thedoctor.

I would keep the discovery of a breast change to myself untildecided what to do about it.

I have a friend or relative who is a nurse that I would ask about

the breast change to help me decide what to do.

Being female, you take care of your family, you take care of yourspouse or partner, but you're not supposed to worry about takingcare of yourself.

| always tell my mother or sister about changes in my body, and shetells me when I need to see the doctor.

If I found a breast lump I think I would go right in to the doctor.

I'd probably do nothing about a breast change because you haveto die of something.

If I could avoid it, I would not go to the doctor.[12]

I would be on the phone to the doctor right away. (113)

If I had a problem with my breast I would just refuse to deal with it.tº 4,

| cannot imagine myself doing anything but calling the doctorimmediately. [15]

I would just hope the breast problem would go away. ■ ite,

$ Please go on to the next page $

221

What you think is most correct for you? (Circle One)

TRUE

TRUE

TRUE

FALSE

FALSE

FALSE

If anyone is going to get breast cancerit will probably be me. ■ ful

If I had a lump in my breast I'd think"Well, I have to die of something." Fiz.

If I did get breast cancer, there wouldn'tbe much l could do about it. [Fal

Sometimes I think I'm destined to get

* The first person I would tell about a problem in my breast would be:(Check Only One) Husband/Partner

GirlfriendDoctor/NurseSister/MotherOther (What relation is this person

to you?)No One. (G1)

$ All things considered, when I think about whether I would have my breast changechecked by a doctor: (Choose Only One)

I am not sure that I would have it checked immediately.I am very sure that I would have my breast checked immediately.

■ in

$ I have a change in my breast right now that sometimes worries me.

YES NO

(G21

If you answered "YES" to this last question about having a change in your breast right nowthat sometimes worries you, which is most correct for you? (Circle One)

YESYESYESYESYESYES

YES

YES

NO I am worried that this change might be breast cancer. (G3)

NO A doctor or nurse has checked the change in my breast. [Gº]

NO I don't think I'm very likely to get breast cancer. [Gº]

NO The change in my breast is a lump. (G6)

NO I have had a biopsy or a surgery for this breast change. (Gin

NO I have asked a friend or family member what I should do about thechange in my breast. IG-6,

NO I get so many changes in my breasts, this one doesn't worry memuch. [Gº]

NO I can't financially afford to deal with my breast problem now. [Gºto|

* Please go on to the last page &

222

$ if there is something else you would like to say about breast problemsthat we forgot to ask please write us some comments So we caninclude your ideas:

§ $ $

THANK YOU VERY MUCH FOR YOURPARTICIPATION IN THIS PROJECT.

§ $ $

INFORMATION ABOUT BREAST EXAMINATIONSAND MAMMOGRAPHY ARE AVAILABLE WHEN

YOU RETURN THIS SURVEY

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