.. a“. . (5.1.. .P... 3 G‘ . 3,. ‘ .....huzx§.s... - v z , .31.! 1 .3. I}: .4 u w J...) Is: 35...: u :v . a: x 5.5.11... . 5.311 . .5. .x 3).“: I? ‘sxq‘fivrfil . a .1 Inc... .2 2 3.2%...1.‘ O 4) .. ‘vl. . 331.3}? a." . . v. l as I;Jh.fln.a.>. .. : “.33 ii. ..;§ 5. 3.5.... NVE - Ill‘ilfliilll'illllllll zilllllllil'lllllliill 1293 01410 0600 This is to certify that the thesis entitled Perceived . . Barriers to mammography screening in women age 40 and older who do not . follow mammography screening guidelines presented by Rita A. Dekker has been accepted towards fulfillment of the requirements for MaSter degree in NurSing / v 4 ."/ A r \ Major professor Date 27/ 4/?5 0-7639 MS U is an Affirmative Action/Equal Opportunity Institution LIBRARY Mlchlgan State University PLACE ll RETURN BOX to romovo this chookout from your rooord. TO AVOID FINES rotum on or boron duo duo. DATE DUE DATE DUE DATE DUE lo/ui/flfi r f 4 A MSU loAn mm Action/Equal Opportunity lnotltwon WM1 PERCEIVED BARRIERS TO NANNOGRAPHY SCREENING IN HONEN AGE 40 AND OLDER WHO DO NOT FOLLOH THE RECOMMENDED HAHNOGRAPHY SCREENING GUIDELINES 8)! Rita A. Dekker A THESIS Submitted to Michigan State University in partial fulfillment of the requirements for the degree of MASTER OF SCIENCE College of Nursing 1995 ABSTRACT PERCEIVED BARRIERS TO MAMMOGRAPHY SCREENING IN HOMEN AGE 40 AND OLDER NHO DO NOT FOLLOH THE RECOMMENDED MAMMOGRAPHY SCREENING GUIDELINES 3)! Rita A. Dekker The purpose of this retrospective, descriptive study was to explore barriers to mammography screening in women who did not follow mammography screening guidelines. Specific barriers explored were: lack of physician recommendation, discomfort of mammography and cost and inconvenience of obtaining a mammogram. Data for this secondary analysis were from 226 women who participated in the original study, The Rural BreastCancer Screening Project. Review of responses from a self- administered questionnaire completed by the participants was the method used to obtain the data. Data was analyzed using descriptive statistics and chi square. A significant study finding was that women reported the cost of the mammogram was a barrier to screening. However, study results indicated that discomfort, lack of physician recommendation and inconvenience were not barriers to screening. Findings from this study suggest that Clinical Nurse Specialists (CNS) in primary care settings, should evaluate barriers to mammography related to cost prior to the mammography referral. The goal of the CNS is to foster mammography compliance by assisting the client to overcome identified barriers to screening, such as those related to the cost of mammography. ACKNOWLEDGEMENTS My sincere appreciation to Barbara and C.H. Given for hiring me as a graduate assistant to work on their research and for the use of their data which made this study possible. In particular, I would like to thank Barbara, the chair of my committee, for encouraging me, enhancing my creativity, giving me constant support, and guiding me through the study. I would also like to thank the two other members of my committee, Rachel Schiffman and Brigid Warren, for sharing their insight, assisting with refining detail, and providing support during the writing of this thesis. In addition, I am grateful to Judy P. for her patience and assistance, without her help this study would have been much more difficult. finally, I reserve my greatest thanks to my family and friends for standing by me throughout the process of completing this study. To my daughters Isa and Michelle, thanks for your patience, support and encouragement along the way. Isa, you were always there during our numerous phone conversations, listening, laughing, encouraging me, and pushing me along. Michelle, there were too many nights without dinner, but I'll make it up to you. A special thanks to my husband David who was there during times of distress with his support, suggestions, typing, and willingness to make copies whenever needed. Each of you holds a special place in my heart, and I will always be grateful for your friendship and valuable assistance. iii TABLE OF CONTENTS Page LIST OF TABLES ........................... vi LIST OF FIGURES .......................... vii Introduction ............................ 1 Statement of the Problem ................... 2 Purpose of the Study ..................... 4 Conceptual Definition of Variables . . . .............. 4 Theoretical Framework ..................... 8 Relationship of HBM to Study Variables ............ 12 Literature Review ....................... 20 Lack of Physician Recommendation ............... 21 Discomfort Related to Mammography Procedure .......... 27 Cost and Inconvenience of Mammograms ............. 29 Need for Study ........................ 35 Methods ............................... 35 Sample ............................ 36 Operational Definition of Study Variables ........... 36 Barriers to Mammography Screening ............... 36 Description of Instrument ................... 40 Validity ........................... 40 Reliability .......................... 41 Data Collection ........................ 41 Human Subject Protection . . . .. ............... 41 Analysis of the Data ..................... 42 Assumptions and Limitations of Study ............. 43 Data Presentation and Analysis ................... 44 Overview ........................... 44 Sample Characteristics .................... 44 Research Questions ...................... 46 Summary ............................ 55 Discussion ............................. 56 Limitations of the Study ................... 60 Implications for Advanced Nursing Practice .......... 63 Strategies to Overcome Barriers ................ 65 Affecting and Changing Health Policy ............. 70 Recommendations for Further Research ............. 72 Summary of Study ....................... 75 Table of Contents (cont.) Page REFERENCES ............................. 77 APPENDICES Appendix A: The Rural Breast Cancer Project .......... 81 Appendix B: Study Questions .................. 87 Appendix C: Rural Breast Cancer Project Questionnaire ..... 89 Table LIST OF TABLES Page Distribution of subjects by frequency and percent and sociodemographic variables ................ 45 Chi-square for comparison of barrier status by two item response related to: Lack of physician recommendation ........................ 48 Discomfort items related to mammography procedure ....... 48 Frequency and distribution of discomfort scale ........ 50 Frequency and percentage of women who reported that mammograms are a hardship due to cost of mammography procedure .......................... 52 Frequency and percentage of women reporting by barrier response: Related to inconvenience of mammograms ...... 52 Cost barrier related to income ................ 54 vi LIST OF FIGURES Figure Page I The Health Belief Model Modified ............... 9 2 Adaptation of the Modified Health Belief Model to study variables ....................... 13 vii Introduction In women, cancer of the breast is the most frequent cancer and the second leading cause of cancer related deaths (Humphrey a Ballard, 1989). Approximately one out of nine women develop breast cancer during their lifetime (ACS, 1993). The American Cancer Society (ACS) estimated that in 1994 there would be 182,000 new cases of breast cancer diagnosed in this country, and 46,300 breast cancer related deaths (ACS, 1994). Breast cancer is an insidious disease that may be present in women and develop over many years without signs or symptoms of any kind. Seventy-five percent of breast cancer cases occur in women with no known risk factors other than sex and age (Hortobagy, McLelland & Reed 1990). While there is no demonstrated means of preventing breast cancer, there is a demonstrated means of detecting it. The most important mean is through screening and early detection (ACS, 1994). Consequently, the National Cancer Institute (MCI), and the ACS have recommended that women regularly undergo screening for breast cancer (Anda, Sienko, Remington, Gentry & Marks, 1990). Mammography is recognized as the most effective early detection method for breast cancer (Schechter, Vanchieri & Crofton, 1990). The effectiveness of mammography for screening asymptomatic women is undisputed (Stein, Fox, Murata & Morisky, 1992). Mammograms are capable of cancer detection at a very early stage, when tumors are not yet clinically palpable, and possibly before metastasis has occurred (Humphrey & Ballard, I989). Mammography screening consists of an x-ray examination of the breasts using low level radiation (ACS, 1993). The recommended 1 2 mammography screening guidelines are: baseline mammogram for women age 35-40; annual or biannual mammogram for women age 40-49; and annual mammogram for women age 50 and over (Breast Cancer Screening and Detection in Michigan: Recommendations to Reduce Mortality, 1990). WWW Although mammography is a proven technology for diagnosing curable breast cancer and preventing deaths, it remains underutilized (Schechter & Vanchieri, 1990). Research indicates that compliance with mammography has been poor (Rimer, Trock & Engstrom, 1991). Poor compliance with screening was evidenced in a 1990 NCI study which revealed that the following percentages of women had received mammograms: 40 to 49 years, 40%; 50 to 59 years, 35%; 60 to 69 years 28%; and 70 to 75 years, 18%. Although, these percentages indicate that the number of women obtaining mammograms is on the rise, nevertheless, the numbers remain low and are still far less than ideal (Smith & Haynes, 1991). Research indicates that, although mammograms can detect lesions before they are clinically palpable, over 75% of breast cancers detected in 1989 were by women doing a breast self exam. Unfortunately, studies indicate that 50% of women who detect breast cancer by means of BSE already have lymph node involvement, and a majority die from the disease (Humphrey & Ballard, 1989). Consequently, the mortality rate for women with breast cancer has remained constant for the past 30 years (Clarke & Sandler, 1988). There is a growing national recognition that mammography must be better utilized. Experts agree that regular mammography must be the standard of care for every woman (Hortobagyi et al., 1990). If screened 3 properly, mammograms could reduce the breast cancer mortality rates by at least 30% (Rimer & Track 1990; Schechter, Vanchieri & Crofton, 1990). The problem is that, even though breast cancer is the number one cancer in women, and the only way to reduce the breast cancer mortality rate is for women to follow mammography guidelines and detect breast cancer early, screening compliance continues to be poor. The literature suggests that a number of perceived barriers exist that are preventing women from participating in mammography screening (Rimer, Keintz, Kessler, Engstrom & Rosan, 1989; Rimer et al., 1991). Many researchers have explored attitudinal components of preventive health behavior by using the Health Belief Model (HBM) as a theoretical framework for their research (Champion, 1987; Rutledge, Hartman, Kinman & Winfield, 1988). They have found that attitudinal components may serve as barriers to participating in screening. Although, studies reveal that 98% of all women have heard of mammography (Rimer, Trock, Engstrom, Lerman & King, 1991) researchers have found numerous barrier to compliance with mammography screening, including physician underuse of mammography (Kruise & Phillips, 1987). Rimer et al., (1991) agree that lack of physician recommendation is a barrier to screening, and also cite other barriers such as distance, inconvenience, and cost. Ansell, Dillard, Rothenberg, Gentry and Marks (1988) report that many women cannot afford mammograms and that cost is a barrier to screening; and Richardson, Marks, Solis, Collins, Birba and Hisserich (1987) state that emotional reactions to screening, such as nervousness, are strongly correlated with non-compliance. Although research studies indicate that a number of barriers prevent women from participating in mammography screening, Champion 4 (I991) feels that barriers to mammography need further research, and that researchers have only begun to gather preliminary data to determine which valid barriers exist. W The purpose of this study will be to conduct a secondary analysis of data to better understand the barriers to mammography screening. The research question to be answered in this study is ”What are the perceived barriers to mammography screening in women age 40 and older who do not follow the recommended mammography screening guidelines?” Specific barriers to be explored are related to three areas of concern: first, lack of physician recommendation; second, discomfort of the mammography procedure; and third, the cost and inconvenience of obtaining mammography. This thesis will further explore barriers to mammography screening in an effort to provide useful information in order to sensitize nurses and health care providers to the barriers preventing women from participating in mammography screening, and to help nurses and health care providers develop skills for encouraging women to participate in mammography screening. Conceptual Definition of Variables The term barriers has been defined by a variety of authors. For example, Janz and Becker (1984) defined barriers as the potential negative aspects of a particular health action which may act as an impediment to undertaking the recommended behavior. Similarly, Rutledge et al., (1988) defined barriers to mammography as factors which have either moderate, or much influence on the decision not to have a mammogram. In addition, Smith and Haynes (1991) have defined barriers 5 as those factors that, either combined or alone, are associated with a reduced likelihood of having a mammogram. Therefore, for the purpose of this thesis, barriers will be defined as those negative aspects or factors which are associated with a reduced likelihood of taking a health action such as having a mammogram. This research will explore three separate barriers to mammography screening that involve first, a lack of physician recommendation; second, discomfort related to the mammography procedure; and third, cost and inconvenience. Lack of physician recommendation will be defined as there being no educational intervention or discussion regarding mammography guidelines and no referral or recommendation made by physicians to their clients to suggest that they obtain a screening mammogram. Physicians are among the most frequent he health care providers who are responsible for the ongoing health maintenance of their patients. Physicians should perform components of breast cancer screening by discussing with women mammography guidelines and the benefits of mammography, performing clinical breast exams and recommending to their patients that they obtain mammograms (Breast Cancer Screening and Detection in Michigan: Recommendations to Reduce Mortality, I990). Rimer et al., (1990) state that women who perceive their physicians as strongly recommending mammograms are significantly more likely to comply with mammography screening. In addition, according to Stein, Fox, Murata and Morisky (1992), studies regarding the utilization of mammography have generally found that a physician's recommendation or referral to mammography strongly influences whether a woman gets 6 screened. Therefore, Smith and Haynes (1991) describe physicians as ”gatekeepers,” stating that the role of the physician as gatekeeper represents the greatest challenge to understanding provider referral barriers to breast cancer screening. This is best explained by the discretionary decisions physicians make regarding which women are referred for mammography, i.e., who will or will not receive a recommendation for mammogram. Furthermore, Smith and Haynes (1991) state that gatekeeping decisions are shaped, not only by physician's knowledge and attitudes about CBE and mammography, but also by their perceptions of whether the exam is appropriate, acceptable and affordable by their patients. Discomfort related to mammography procedure has been described by researchers in a variety of ways. For example, Fox, Baum, Klos and Tsou (1988) state that many variables help explain the underuse of screening for breast cancer, such as "negative feelings or apprehension" about the mammography procedure. Kurtz, Kurtz, Given and Given (1994) suggest that women who do not participate in screening, may have concerns related to the fact that mammograms may be perceived as being unpleasant, painful, embarrassing or anxiety provoking. Hamwi (1990) states that when the breast tissue is compressed for the mammography procedure, a woman may feel a sensation of breast discomfort or pain. Furthermore, Strax (1988) adds that in some instances, due to the vigorous breast compression of the mammography device, many women have complained of bruised breasts. Therefore, discomfort in this thesis will be defined as any unpleasant physical or emotional response that is related to the 7 mammography procedure. It will include anxiety, embarrassment, nervousness, discomfort or pain. Cost and Inconvenience of mammography procedure are situations that prevent women from obtaining mammograms. Some of the reported access barriers that prevent women from obtaining mammograms include the actual cost of mammograms; the lack of health insurance to cover the cost; the lack of available mammograms in certain locations; and the fact that mammograms may be inconvenient or difficult to arrange (Brown, 1989; Rutledge et al., 1988). Mammogram cost is defined as all costs, which not only include the incurred cost of an actual mammogram, but also any other hidden financial costs such as the cost of office visits for CBE and mammogram referral, or the cost of follow-up visits as a consequence of abnormal mammography findings (Humphrey & Ballard, I989; Hertheimer, Costanza, Dodson, D'Orsi, Pastides & Zapka 1986). Therefore, for the purpose of this study cost will be interpreted as a single generalized cost. Inconvenient mammograms will be defined as those which are difficult or inconvenient to arrange. This inconvenience may result from having to travel long distances to the mammography facility, or from the extensive process women must go through to obtain mammography. For example, currently it is necessary for women to make several appointments, including visits to the provider for referral, before traveling to the mammogram facility for the mammogram. This results in multiple time off from work, requiring transportation, baby-sitters, and an anxiety-provoking waiting period to obtain results (Brown, 1989). W In an effort to further explore barriers currently preventing women from participating in mammography screening, this study will use the Health Belief Model (HBM) as a theoretical framework to explore barriers to mammography screening. The HBM is a theoretical framework, originally developed in the early 1950's, by social psychologists in an attempt to understand the widespread failure of people to accept screening tests for the early detection of asymptomatic disease (Janz & Becker, 1984). In Figure 1, the original HBM is demonstrated. The HBM is a psychosocial model that attempts to explain health behaviors that maintain health, prevent disease or detect disease when the individual is asymptomatic (Stein et al., 1992). Since the HBM's initial development, it has been used by many researchers in an attempt to understand why some individuals engage in preventive health behaviors at an individual decision-making level, and why others do not. Some of the past investigators who have utilized the HBM as a framework for research in cancer detection and screening behaviors are: Brown (1989); Champion (1991); Given and Given (I984). The HBM continues to be used as an explanatory model in preventive health behavior research (Nemcek, 1990) and has been used successfully by researchers. Champion (1991) investigated breast cancer detection behaviors of women, and Stein et al., (1992) investigated women's mammography usage and participation in preventive behaviors. The HBM suggests that when barriers to engaging in prevention are minimal, and other disease specific health beliefs are strong, then a person can be expected to engage in prevention. When the reverse exists, these actions are unlikely (Janz & Becker, 1984). The HBM cocoa 5:8: mafia mo poor—=33 032558 3208582 fl Anne 5:52 a 388 .gguagduqaqndfl 225 05.3me S consumaoz ESE 8 £83 mo 32:: 38889 #6582 c3235 fiofio ES» 833‘ mewBaan £38 :32 g — :X: Omavmma mo “moan—h. — % as? has 033on coves o>uco>oa 8 8253 8 880 35683 BEE A32? .353 3288 5:8 033265 Mo wagon Bzoocom Aocsmmoa 9.on 3:232 ecu Boa $20 308 .bficoflomv 3335? fiefiBosozmmomoom Eot coag< .8323 5:3: o>zco>8q mo 88:53 3 2mm of. ._ Emmi 32? be; ozawoc as ..X.. 030% 90 mmUCmsoCom Uofioeom 828580 2 do 525883 Lo. 0388 9 bzfiuaoomsm 338an 35:50 .88 £8 .0an oBmE> oEaSonoQ ZO~P0< .mO GOOI—AHME mmOPUflm GZFfih—QOE mZO—Emommm A~QZ~ 10 hypothesizes that health related behavior depends upon two variables: the desire to avoid illness and the belief that a specific health action will prevent or ameliorate illness (Janz & Becker, 1984). The HBM links individual attitudes about health to health actions, and hypothesizes that health-related behaviors depend upon the simultaneous occurrence of the following four items: first, the existence of motivation or a health concern; second, the belief that one is susceptible to a serious health problem, or perceives a health threat; third, the belief that following a particular recommendation would be beneficial in reducing the perceived health threat; and fourth, a decrease of the perceived barriers to participating in particular health recommendation (Rosenstock, Strecher & Becker, 1988). The four original concepts of the HBM are defined as follows: perceived susceptibility, or one's subjective perception of the risk of contracting disease; perceived severity, or feelings concerning the seriousness of contracting the disease, or the medical consequences such as death, disability and pain; perceived benefits, or beliefs regarding the effectiveness of the various actions available in reducing the disease threat; and perceived barriers, or the potential negative aspects of a particular health action which may act as an impediment to undertaking the recommended behavior. According to the conceptual framework of the HBM, health behaviors are more likely to occur if an individual feels susceptible to a specific condition and feels the condition is serious (Champion, 1987). Furthermore, Mikbail (1981) states that the individual's perception of susceptibility to a disease has been found to be positively related to the taking of a wide variety of preventive health actions and obtaining ll screening. Similarly, Stein (1992) states that basic cognitive variables influence behavior, and that factors positively associated with behavior are an understanding of personal susceptibility to illness and understanding of benefits of treatment. The HBM model also has modifying factors that influence individual perceptions. These modifying factors include demographic variables (such as age, sex, race, and education) and structural variables (such as knowledge and prior contact). Therefore, modifying factors such as education may influence knowledge of susceptibility or a clearer understanding of threat of illness. The HBM also proposes that before care-seeking behavior takes place, the individual must experience a cue to action or stimulus to act. The cue might be external such as advice from family members, knowing someone with breast cancer, physician recommendation, or exposure to mass media (Lauver, 1987; Rosenstock, Stretcher & Becker, 1988). The modifying factors and the cues both influence the perceived threat of disease, the perceptions of benefit, and barriers to taking action (Rosenstock, 1974). Likelihood of taking necessary action, or motivation, is an added concept to the HBM's four original concepts. Motivation has been Operationalized as the state of readiness to take specific action (Champion, 1984). Prior to taking action, the HBM suggests that an individual must first perceive the benefits of the preventive actions (or positive utility value), and then evaluate the perceived barriers or costs of the preventive action (negative utility value). The HBM's assumption is that individuals will not take action unless the course of action is 12 believed to be beneficial in reducing the threat of disease, and the perceived barriers do not outweigh the perceived benefits (Kasl, 1974). In contrast, if the benefits outweigh the barriers, then the individual will take action. Given and Given (1984) modified the HBM to include the client's desire to comply with recommended treatment. Given and Given (I984) define compliance as the behavior or set of behaviors that a patient performs at the suggestion of the health care provider in order to maintain her health. Rosenstock and Stretcher (1988) indicate that a weakness of the original HBM is that it ignored efficacy expectations, and thus may have failed to account for differences in behavior. In recent years the HBM has been revised to incorporate concepts of self-efficacy to explore problems of explaining, predicting and influencing behavior. Lauver (1987) defines self-efficacy as perceived competence or incompetence in one's own examination, or how well a person can act in a given situation. According to Rosenstock et al., (1988), people may fail to comply with medical advice or to take health protective actions because they fail to exhibit sufficient motivation, or because they do not think they are likely to contract the illness, or be seriously affected by it. figlgtjgnship of the HBM and Study Variables Selected concepts of the HBM will be used in this study to further explore barriers to mammography screening. The study will use the Given and Given (1989) modified HBM which has been adapted for the specific variables in this study. Refer to Figure 2 which demonstrates the modified HBM as adapted to the study. l3 .Aowfl 520a. 829 .fiufladdafiaqqufiqfiadag Eat enamel... .mcoanEaxo $35 2 3580322 :05 use 930:8 353 2C. .m Bzwi wficoocom EmfionEmE E «602 was: catamaran mo coca—83 museum base A :33. 9 8:0 >ImZOUZ~ an .500 . .8 mmocmsotom >memm mo M045 . OZHmemUm >3m<-0022<2 A F a a a c 0% mmemmb H 353230 H concoEEooom m a $5.8ch 505.0 5588 we 08mm So ow 3o: maufimoESxE «o A 94. U2 M mucucom voices; €88”— wEbBoZ 8850 8.05.81... mmqm >QBm OF EmmZOF/Smm mark DZ< mEmUZOU Ammo—2 "mm—4mm E490 1 ,Z 150 100.0% mums: Hhite 154 97.5 Black 0 .0 Hispanic 1 .6 Am. Indian 2 1.3 Other __t .6 158 100.0% mm Single 10 6.3 Hidowed 21 13.0 Married 102 63.8 Separated/divorced _21 _t§pg 166 100.0 Education < 8th grade 2 1.3 8-11 grade 14 8.8 HS-GED 58 36.3 Vocational 16 10.1 1-3 yrs. college 42 26.3 College grad 17,5 160 100.0 1mm: <15,000 83 50.3 15-20,000 23 14.2 21-25,000 19 11.7 26-30,000 10 6.2 31-35,000 9 5.6 36-40,000 l .6 41-45,000 4 2.5 > 46,000 _1; 8.1 162 100.0 Location Livingston 132 58.4 Ingham 84 37.2 Shiawassee 9 4.0 Barry __1 0,5 N N 05 0—0 O O O 46 participants were Caucasian, with the remaining 3% consisting of a varied ethnic background. None of the subjects reported being African American. Sixty-four percent were married and 16% were divorced. Fifty-three percent had an education beyond high school, 36% completed high school and 10% did not have a high school education. The combined household income varied, with half of the sample reporting an income of less than $15,000, and the remaining distributed across income levels to $50,000. Therefore, the subjects were primarily white (97.5 %), married (63.8%) with varied levels of education. One-half of the subjects had a combined household income of less than $15,000. r ti n The specific research questions used in this study to explore barriers to mammography screening related to 1) lack of physician recommendation, 2) discomfort of mammography procedure, and 3) cost or inconvenience of mammography are presented along with a review of the findings relevant to each question. The first barrier explored in this study was lack of physician recommendation to mammography screening. Barrier 1: Lack of physician recommendation: Question 12v: My doctor has never suggested that I have a mammogram. Question 22: Has your doctor advised or discussed mammography with you? To evaluate if lack of physician recommendation is a barrier to mammography screening two items were selected. The majority of participants 65.8% (n=96) "disagreed or strongly disagreed" with the statement that their physician had never suggested mammography, only 47 34.2% (n-50) agreed or strongly agreed that their physician had not recommended mammography to them. Similarly, when participants were asked if their physician had advised or discussed mammography with them, 64.5% (n-BO) indicated that their physician had suggested mammography, and only 35.5% (n-44) of the subjects indicated that their physician had not recommended mammography to them. Of the subjects who answered both items forming the lack of physician recommendation scale, similarly, a significantly higher proportion of the women 71.7% (n-66) reported that lack of physician recommendation was not a barrier (Table 2). Since only 28.3% (n=26) of the sample indicated that lack of physician recommendation was a barrier to mammography screening, it was concluded from the findings in this study that lack of physician recommendation was not a barrier to mammography screening. aggjtjppal Findings; Data related to how important participants perceived their physicians advice to have mammography was examined by asking "Hith regard to breast cancer screening practices, how important to you is the opinion and advice of your doctor". Of the sample, 157 or 69.5% of participants responded to this question. The majority of participants 97.4% (n-153) indicated that a physicians opinion and recommendation to mammography was either important or very important. None of the participants indicated that a physicians recommendation was not at all important. Barrier 2: Discomfort related to mammography procedure. Question 12c: A mammogram is an unpleasant procedure. Table 2 C a re 0058 f r lat 48 r s n o t : a k f h ' ' Barrier Yes No Lack of physician 28.3% 71.7% recommendation 26 66 Chi square . 17.4 p - .0000 * Note: 24 subjects did not respond consistently to both items and 110 subjects did not answer either question or one of the questions Table 3 is mf rt item r lated mammo r o Strongly Disagree Agree Strongly Missing Disagree Agree Cases (1) (2) (3) (4) N % N % N % N % N Unpleasant 20 14.1 53 37.3 63 44.4 6 4.2 84 Painful 21 15.6 64 47.4 42 31.1 8 5.9 91 Embarrassing 33 22.0 62 41.3 48 32.0 7 4.7 76 Anxious 21 14.4 72 49.3 44 30.1 9 6.2 80 Uncomfortable 23 17.2 61 45.5 44 32.8 6 4.5 92 49 Question 12o: A mammogram is painful. Question 12b: A mammogram is an embarrassing procedure. Question 12f: A mammogram would make me feel anxious. Question 12l: A mammogram makes me feel uncomfortable. The second barrier explored in this study was discomfort related to the mammography procedure. Discomfort for this study, were any unpleasant physical or emotional response related to mammography. Discomfort of mammography includes anxiety, embarrassment, uncomfortable, unpleasant or painful perceptions related to the procedure. First, the frequency and percentage was calculated for each individual discomfort item. Overall, when looking at barriers related to discomforts of mammography, results demonstrated that responses were varied or mixed, while some women perceived discomforts related to the mammography procedure, the majority of women did not (Table 3). Responses to individual discomfort items were reported as follows: Fifty-one percent (n-73) indicated that mammograms were not unpleasant; 62% (n-85) indicated that mammograms were not painful; 63.3% (n-95) mammograms are not embarrassing; 63.7% (n=93) mammograms do not cause anxiety and 62.7% (n=84) reported that mammograms did not make them feel uncomfortable. The individual discomfort items were then grouped and a discomfort scale was constructed with all of the discomfort items (See Table 4). Reliability analysis on the group of discomfort items yielded a Chronbach's alpha of .79, which indicated that these items could make a good construct. The average was slightly less than the middle point of the scale (2.50). The mean for the scale was 2.27 (sd-.58). This 50 Table 4 F c i i t BE u—oo at O 0—: O 0 HM H a O g—o middle point* of scale 62.6% awe WwaNO—lw o o o o o o o o o o o o o a o o o o e e e o e mmmmwNmemNNmNNHOO-OUNOU’U‘ O! O N h—I w w u—u—a HHHHNmHNwamHMNU‘mt-‘NU‘HNN z hwwwwwwNNNNNNNNNo—IHHHHHH O O O O O 0 O O O O O O O O O 0"! O HONH 100.0% Mean score - 2.27 sd . .58 Missing Cases = 71 chi square = 9.8 sig = .0017 * Note < 2.25 97 (62.6%) > 2.25 58 (37.4%) 51 indicated that the average response was "disagree" which meant that most women responded that discomfort was not a barrier. Study findings revealed that 97 women or 62.6% of the respondents strongly disagreed or disagreed that discomfort was a barrier, and 58 women or 37.4% of the sample strongly agreed or agreed that discomfort was a barrier. Thereby, based on the statistical findings from this study, it was concluded that discomforts related to the mammography procedure were not a barrier to mammography screening. Aggjtjpnal Fiudjngs Data was then analyzed to evaluate if discomfort correlated to age, education or income. Data analysis revealed that education and income were slightly correlated at .14. However, study findings demonstrated that income, age and education were not correlated to discomfort. Barrier 3: Cost and inconvenience of mammography Question 12d: A mammogram is a hardship due to cost. Question 129: A mammogram is convenient to arrange. Question 121: A mammogram is not available in my area. The third barrier to be evaluated was cost and Table 4 inconvenience of mammography. To evaluate if cost or inconvenience were barriers to mammography, the one cost item and the two inconvenience items were analyzed separately. First, as noted in Table 5, data were analyzed to evaluate if the cost item was a barrier to mammography. The frequency and percent for the cost item was calculated. Of the 156 participants who responded to this item, the majority of respondents (n-123) or 79.3% either agreed or strongly agreed that mammograms were a hardship due to cost. The mean for the cost item was 3.14 (sd =.91). Table 5 MW r n : R l o ‘n ' N- N % (1) Strongly Disagree 11 7.0% (2) Disagree 22 14.1% (3) Agree 57 37.0% (4) Strongly Agree 66 42.3% Totals 156 100.0% Table 6 Freguency and percentage of women reporting by barrier rasponse: Related to inconvegience of mammograms Strongly Disagree Agree Strongly Total Disagree Agree N % N % N % N % N % Convenient to arrange 9 6.1 34 23.1 85 57.8 19 12.9 147 100% Not available in my area 52 36.3 82 57.3 5 3.5 4 2.8 143 100% * Convenient to arrange N . 147 * Not available N = 143 53 Therefore, it was concluded from this study that the cost of mammography is a barrier to mammography screening. Then, presented in Table 6 the frequency and percentage of the inconvenience barrier was calculated for the two inconvenience items. Results indicated that of 147 subjects who responded to the first item, the majority (70.7%) responded that mammograms were convenient to arrange with only (n-43) or 29.2% who disagreed or strongly disagreed that mammograms were convenient to arrange. Similarly, when asked about mammogram availability near area of residence, of 143 subjects who responded only (n-9) participants or 6.1% agreed or strongly agreed that mammography were not available in their area. Therefore, for most of the subjects (n-134) or 93.6% mammograms were available. The two inconvenience items were not combined because the alpha reliability was .15. On examination of both inconvenience items, 7 of the 9 people that responded that mammograms were not available in their area, then agreed or strongly agreed that mammograms were convenient to arrange. Perhaps this was due to the fact that these women felt that even if they had to travel a distance, this would not be an inconvenience. Mean score for inconvenience was 2.25. Due to the inconvenience responses it was impossible to analyze the combined inconvenience items. Therefore, it was concluded from the data that inconvenience was not a barrier to mammography screening. AQthipnal Findings In Table 7 the cost item was then compared to income. Of the 156 subjects who responded 50% had low incomes of less than $15,000. Of those low income women, 80.8% responded that mammograms were a barrier due to cost. An interesting finding, also was that the other 50% of the 54 Table 7 §p§t parpigr ralateg tp jngpmg N=1§§ Cost Barrier Row Pct Row Total Col Pct Yes No Income 63 15 78 Less than 80.8 19.2 50.0% $15,000 51.2 45.5 60 18 78 More than 76.9 23.1 50.0% $15,000 48.8 23.1 * Chi square .35 Significance .56 55 sample or the higher income women, 76.9% also reported that cost was a barrier to mammography. Therefore, cost was a barrier for the majority of women regardless of their income. The cost was then related to insurance. Respondents consisted of n-159, of these 58% of the low income women (less than $15,000) reported having insurance, while 78.5% of higher income women whose (greater than $15,000) reported having insurance. Overall of the total sample 67.5% had health insurance. However, even though more than half of the sample reported having health insurance, most of the insurance did not cover screening mammograms. Since 96.5% of the women who reported having insurance also reported that their insurance did not cover screening mammograms. 59mm The goal of this study was to explore potential barriers to mammography screening related to: lack of physician recommendation; discomfort of the mammography procedure; cost and inconvenience of mammograms and to evaluate if these barriers were preventing women from participating in mammography. The most important finding of the study was that cost was a barrier to mammography screening. Study findings indicated that 79% of the participants responded that mammograms were a hardship due to cost. However, the study did not substantiate the proposition that a lack of physician recommendation, discomfort or inconvenience were barriers to mammography. While the study showed that of those surveyed, 71% disagreed that their physician had not recommended mammography, it should not be overlooked however, that for 28% of the women in the study lack of physician recommendation was a barrier to mammography screening. 56 Findings related to discomfort showed that for some women discomfort was a barrier 37.4%, however, the majority or 62.5% reported that discomfort was not a barrier to mammography. In addition, inconvenience did not appear to be a barrier to screening, because 70% of the women surveyed reported that mammograms were convenient to arrange. Discussion Upon completion of the analysis of the data, several conclusions related to barriers to mammography screening have been reached. These conclusions are presented with discussion as to the value of the information. tppclusjpn #1; Lack of physician recommendation was not a barrier to mammography screening. Statistical analysis of the study data revealed that, for participants in this study, lack of physician recommendation was not a barrier to screening. The majority of the sample, or 71%, indicated that lack of physician recommendation was not a barrier. Results of this study were not consistent with data reviewed from the literature. When comparing results of this study to the literature, the percentage of women reporting lack of physician recommendation was greater in the literature. For example, in the study of Lane & Burg (1990), 44% of the women reported lack of physician recommendation was a barrier. Similarly, Richardson & Marks (1987) found in their study that 82% of women reported a lack of physician recommendation as a barrier. In this study, a finding of clinical significance was that 28% of study participants indicated that their physician had not discussed or recommended mammography to them. Therefore, lack of physician recommendation was a barrier for less than one-third of the sample. 57 In addition, the literature also suggests that a physician recommendation is the single most important factor to women receiving mammograms (Given & Given, 1989; Rimer & Trock, 1992). Furthermore, Rimer and Trock (1991); Schechter et al., (1991); and Vernon et al., (1991) have found that many women report that a physicians recommendation is important, and that a lack of physician recommendation is in fact a major barrier to mammography screening. Findings in this study, that explored women's perception of the importance of a physician recommendation to screening, were consistent with the literature. Study data revealed that 97.4% of respondents indicated that to them, a physician's opinion and recommendation to mammography were very important. guppluptpp_gg; Discomforts related to the mammography procedure were not a barrier to screening. The literature suggests that perceived discomforts related to the mammography procedure can be a barrier to mammography screening. Two of the studies reviewed (Lantz et al., 1990; Kurtz et al., 1994), concluded that many women have identified unpleasant reasons for non-compliance with mammography such as, pain, embarrassment and anxiety. In addition, Stein et al., (1992) found that elderly women report that embarrassment and nervousness are barriers related to the mammography procedure. Findings from this study indicated that 62.6% of the participants did not agree with perceived discomforts related to mammography. Therefore, discomfort was not considered a barrier. However, while perceived discomfort was not considered a barrier to mammography for the majority of women in this study, it should be recognized that for 37.4% of women discomfort did represent a barrier. Therefore, these finding 58 of perceived discomfort reported by some women, may have clinical significance. guppluajpp_13; Cost related to mammography procedure was a barrier to screening. Inconvenience was not a barrier to mammography screening. The literature review reveals that cost and inconvenience can be a deterrent to mammography. Past studies suggest that for many women mammograms are not accessible due to cost of the mammography procedure (Rimer and Trock et al., 1991; Schechter et al., 1990; Vernon & Vogel, 1991). Throughout the United States the cost of a mammogram varies and can be anywhere from $25 to $250 (JAMA, 1989). In the city of Lansing, Michigan, a mammogram can cost anywhere from $67 to $180 (Given, 1991). It is reasonable then to expect that for low income women the cost of mammography can be an very important issue. Data from this study is consistent with the literature, since analysis of findings revealed that 79.3% of the participants indicated that mammograms were a hardship due to cost. Therefore, cost was a barrier to mammography screening in this study. Findings for this sample revealed that most of the women reported low incomes. Fifty percent of the sample had a total household income of $15,000 or less. Although 67% of those sampled reported having insurance coverage, even for them cost was a factor. Since of those who reported having health insurance, 95% indicated that their insurance did not cover mammography screening. Barriers related to inconvenience also were explored. Studies were reviewed which explored barriers related to the inconvenience of mammography. They indicated that, for some women, inconvenience related to both the hardship of arranging mammography, or the location of the 59 facility may be a barrier to mammography. For example, the Vernon and Vogel (1991) study revealed that 13% of women state that mammograms were inconvenient to arrange, and 15% reported that the inconvenience of the location of the mammography facility represented a barrier. In addition, the studies of Schechter and Vanchieri (1990) and Rimer and Trock (1991) also revealed that inconvenience related to location is a barrier to mammography for many women. In addition, Smith and Haynes (1991) report that women living in rural areas tend to get less screening than those living in urban areas. Consequently, a hypothesis of this research was that women would perceive mammograms as inconvenient, and that inconvenience would be a barrier to mammography screening. However, contrary to the findings in the literature, data from this study does not corroborate, as expected, with findings from the literature. Data regarding inconvenience revealed that women did not find mammograms inconvenient to arrange, since 70.7% responded that this was not a problem. In addition, inconvenience related to location was not a barrier. Only 6.1% of women in this study replied that mammograms were not available in their area. Therefore, it had to be concluded that inconvenience was not a barrier to screening. However, it is of clinical significance that 29.3% of the women found mammograms inconvenient to arrange. In sum, it is evident that existing barriers are preventing women from obtaining mammograms. In this study cost was the only statistically significant barrier to mammography, since 71% of the subjects indicated that mammograms were a hardship due to cost. Therefore, findings for this study suggest that cost was the most 60 significant barrier, preventing the majority of women from complying with mammography. Other barriers which may be clinically, rather than statistically significant to mammography for the women in this sample were discomfort, inconvenience, and lack of physician recommendation. These barriers may be clinically significant, because data findings indicated that a small portion of the subjects indicated that they were barriers to mammography. ijjtatjpps pf tug Study It must be noted that the present study has some limitations. First, the study involved a homogeneous convenience sample consisting of 97% caucasian women. Only 3% of the women were minorities, and there were no African American women. Therefore, a possible sampling bias may have existed, since the sample for this study may not have been representative of the population of women living in the four counties involved in this study. Data for this study revealed that discomfort related to the mammography procedure was not a barrier to mammography screening for the majority (63%) of the women. Findings in the literature suggest that some minority women have reported anxiety and embarrassment related to mammography (Richardson et al., 1987; Schechter et al., 1990). Since it is possible that women of different ethnic backgrounds have different perception of discomfort and that for some minority women perceptions of discomforts may be slightly different or even greater than the discomfort perceptions of caucasian women. It was concluded, that since . the sample for this study consisted of 97% caucasian women, a possible sampling bias due to this convenience sample, may have existed. 61 Second, a limitation to this study may have been related to the average age of the women in the sample, which was 53.9 years. The majority of women were younger, with 45% age 40-49 and only 9% of the women were between age 70-79. Findings of this study indicated that the majority of women said that lack of physician recommendation was not a barrier to screening, and only 28% reported that lack of physician recommendation was a barrier. This finding was inconsistent with the literature that suggests that lack of physician recommendation is reported by women as one of the major barriers to screening (Lane & Burg, 1990). Furthermore, the literature suggests that physicians screen elderly women less often than they do younger women (Heinberger et al., 1991). Consequently, since a large proportion of women in this study were younger, age may have been a factor leading to the findings in this study, which suggested that lack of physician recommendation was not a barrier to mammography screening. Overall, the first limitation related to minority and the second limitation related to the young age of the sample may have affected both the findings related to lack of physician recommendation and also findings related to discomfort of the procedure. Since the literature suggests that women who are older, generally are the ones who tend to complain of discomforts related to the mammography procedure (Heinberger et al., (1991). Also the literature suggests that minority women are screened less than caucasian women (Vernon & Vogel, 1991). In addition, when looking at the findings of this study that relate to lack of physician recommendation, a possible limitation, or problem with this data was that verification was not made of whether the 62 women in the study had a primary care physician. Therefore, when the women were asked if their physician had discussed or recommended mammography to them, and the women responded to this item, it was assumed that respondents actually had a primary care physician. Another possible limitation of this study, which relates to inconvenience, may be due to the location of the residence of some participants. Even though this study was a rural study and women who participated lived in designated rural communities, many of the women in the sample may have lived near the border of a rural area, and perhaps the location of their residence was close enough to a University Medical Center, or a hospital, where mammography facilities were more available to them than in other rural areas of this state. Therefore, the women in the study may have perceived access to adequate medical facilities. Therefore, a possible limitation of this study may be due to the location of the residence of some of the subjects in the sample, since some women may not have lived in rural areas, and findings in this study may not be representative of other situations in which nearby mammography facilities may not available for certain groups of women. The adapted HBM proposed for this study was not completely supported by statistical findings in this study. The model for this study proposed that lack of physician recommendation, discomfort and inconvenience are barriers to mammography. However, study results indicated that the only barrier to screening was cost, since this was a barrier for a large proportion of women. Discomfort, lack of physician recommendation or inconvenience were not barriers to mammography screening, for the women in this study. 63 A possible reason why the model was not supported was because the study was a secondary analysis, the questions used in this study originated from an already established questionnaire, prepared for the original study and more questions could not be included. The definition of concepts in the original study may have had some variation, from the specific definition of variables used in this study. However, this model should be kept and the study replicated. Since it is more reasonable to suspect that the findings in this study could have resulted from a sample bias, rather than a deficiency in the model. Consequently, the opinions of these women may not be representative of the rural population at large which includes, many women who are older and women from diverse ethnic backgrounds and women who live at a further distance from resources. 1 n f Advanced Nur in Pra ce Even though mammography is a proven technology for diagnosing early, curable breast cancer and preventing deaths, and even though the ACS has recommended mammography screening guidelines for women age 40 and older, many women do not participate in screening and consequently many women are dying from breast cancer. Based on the literature, there is no doubt that the CNS working in primary care settings has a critical role in assisting women to overcome barriers to mammography. In the primary care setting, the CNS can be an invaluable resource, not only in providing care, but also in referring and encouraging women to comply with breast cancer screening guidelines by participating in screening. The CNS practices at an advanced level that incorporates clinical judgement, decision making, theory and research into the nursing process. The CNS is responsible for assessing all 64 aspects related to barriers to mammography screening in a clinical setting. As information is gathered during the assessment process, the CNS should evaluate the client's knowledge about breast cancer. Thereby, during the assessment process, CNS using the HBM as a guide, should ask the client if she is aware of breast cancer; if she feels the disease is serious; if she perceives it as a threat; if she is aware of mammography screening; if she believes in the efficacy of mammography; and if she perceived any barriers to obtaining mammography. In the clinical setting, the CNS must evaluate all possible barriers to screening as perceived by each individual client. Specifically, the CNS should evaluate barriers related to cost, since it was concluded in this study that for the majority of women 70%, cost was a barrier to mammography. In addition to cost the CNS should explore other barriers such as those related to discomfort, lack of physician recommendation and inconvenience. Findings for this study indicated that some women may perceive other clinically significant barriers. For example, discomfort was a barrier for almost 35% of the women in the study; lack of physician recommendation was a barrier for 28% of the women; and inconvenience was a barrier for 29%. Therefore, even if in this study, only a small proportion of women reported barriers to screening, they do represent significant clinical findings for the CNS. Since the literature suggests that there are many barriers to mammography, and some women did report barriers in this study, it is crucial that the CNS in the primary care setting explore all of the possible barriers to screening with each individual client, and offer each client an opportunity to discuss their personal concerns or fears related to mammography prior to making a mammography referral. 65 Exploration of the barriers to mammography should include specific questions related to past mammography referrals; discussion regarding perceived barriers related to the discomforts of the mammography procedure, such as pain, embarrassment, discomfort, anxiety and others; and inquiries whether the cost of the mammogram will be a barrier to screening, or whether such things as distance and transportation to facility will keep an individual from complying with the screening. The goal of the CNS in the primary care setting should be to help women overcome barriers to mammography screening, and to assist them to comply with mammography guidelines. In the past, contracting for behavior change has been a successful strategy used by nurses to foster compliance (Steckel, 1982). The CNS first helps women set mammography goals as part of the overall health promotion plan and then measures outcomes. The CNS and client are partners in problem solving, but it is the client who has the principal responsibility for following through with the necessary behaviors required to comply with mammography screening. Strategies to ngrcoma Barriera Strategies to overcome cost barriers. Cost was the most significant barrier to mammography screening for women in this study. Therefore, in an effort to assist clients to overcome barriers related to cost, the CNS in order to have information available for clients and to make appropriate referrals should develop the following four-step strategy: first, explore the cost of mammography in community facilities; second, make a current listing of facilities which are certified; third, consult with community agencies to determine what low income criteria must be met to qualify for low-cost or free mammography; 66 fourth, refer low income clients to agencies who can assist them with obtaining mammography at low cost or no cost. In the Lansing area, women who verbalize barriers to mammography that are related to cost, or to inconvenience due to the location of the mammography facility, may be referred to the following seven agencies: 1) The Ingham County Health Department sponsors a Breast and Cervical Cancer Control program. The health department has clinics which offer women age 40 and older who are low income, breast examinations, referral for mammograms and follow up services after mammography, either free of charge or at cost based on a sliding scale. This services are available for women in Ingham, Eaton, Jackson or Clinton counties; 2) The Barry- Eaton District Health Department which offers free or low cost mammograms to women age 40 and older who qualify, depending on family income; 3) A new Women's Clinic, located in Lansing, offers economical medical care to low income women. A complete yearly exam including clinical breast exam and mammography referral is available for $39.00; 4) The Michigan Capital Medical Center Breast Cancer Detection Center which has a mammography facility that accepts Medicaid payment; 5) The Delta-mammography in Lansing which offers mammography to women for a cost of $90.00, which is slightly less than some of the other facilities; 6) Sparrow Hospital, which has a bi-monthly breast examination clinic. The cost to attend is $5.00 per women. In this clinic women learn BSE, and receive a CBE and mammography referral. A physician is available during clinic hours for consultation and evaluation of breast problems. Sparrow Nurseline nurses are available to assist women who need assistance, overcome cost barriers by making appropriate community referrals to agencies offering free or low cost 67 mammography; and 7) The American Red Cross which sponsors the Medical Access Project, provides transportation to clients who are unable to reach the medical facility to obtain mammography. In sum, cost is an important barrier to mammography, preventing many women from obtaining mammograms. Screening mammograms are recommended by the ACS for women age. Homen must follow age specific recommendations to detect breast cancer early. CNS's not only must evaluate if their client cannot get a mammogram due to cost barriers an the time of the mammography referral. Also at a local, an national level, CNS's must be advocates for women, by uniting in their efforts to represent women, speaking nationally, and addressing the lack of insurance coverage for breast cancer screening, with insurance companies, legislators and policy makers. In an effort bring attention to this issue, and help change current insurance policies so that insurance cover breast cancer screening for all women. Strategies to overcome discomfort barriers. Because the CNS in a primary care setting may encounter women who perceive barriers related to discomfort, the CNS can help patients overcome these discomfort barriers by providing encouragement and support for the client, and also by helping the client express her feelings and concerns about mammography screening. Specific strategies to overcome barriers due to perceived discomfort may include the following: first, alleviate fears by openly discussing discomfort perceptions, such as anxiety, embarrassment, pain, and others; second, dispel client perceived myths about mammography; third, show pamphlets with pictures of mammography machines; fourth, explain that most of the mammography technicians are women, since this 68 may alleviate embarrassment, for some women; fifth, discuss the mammography procedure, explaining that some women may experience discomfort as the breast are compressed during the mammography procedure; and sixth, offer them an opportunity to view a movie about a woman obtaining a mammogram. Furthermore, suggest to women that they schedule their mammogram at a time when the breast are less painful, not during the menstrual cycle. Also, plan educational programs involving mammography technicians, to discuss strategies that technicians can use to help women overcome fears related to discomfort, such as explaining the procedure, how the breast will be squeezed during mammography, offering women an opportunity to look at the mammography equipment, answering questions related to the mammogram procedure. Strategies to overcome barriers related to lack of physician recommendation. The CNS needs to evaluate if a lack of physician recommendation has created a barrier in the past. Strategies that can be used to overcome this barrier include the following: 1) schedule mammography screening for the client as indicated; 2) increase the client's awareness of when screening should take place, by explaining and discussing age specific mammography guidelines as suggested by the ACS; 3) encourage the client to make a specific appointments once a year for CBE and mammography referral; and 4) send yearly cards to patients reminding them that it is time for breast cancer screening. Also, follow-up cards or calls for those patients who do not respond to the first card. Because researchers suggests that for many women the opinion of the physician is extremely important. The CNS should make certain that she verbalizes to the client the importance of early 69 detection of breast cancer via mammography screening throughout the visit, and strongly recommend that the client follow screening guidelines as recommended by the ACS. If the client verbalizes that there has been a lack of physician recommendation to mammography in the past, it is then very important that the CNS function as an advocate, and empower the client to take an active role in requesting a referral to mammography screening, and making yearly appointments for a CBE and mammography screening. As a client advocate, the CNS must help empower women. This is an important strategy which the CNS must not overlook. As a client advocate the CNS's works to promote a transfer of responsibility to the client, so that the client is actively involved in personal health promotion and participates in activities to detect disease early, such as breast cancer screening. An empowered client may express positive expectation about her future by verbalizing short and long term goals related to mammography screening. These goals can include compliance with mammography, and following through on guidelines to obtain future mammograms as indicated. For example, a goal for a woman would be to obtain an annual mammogram if the woman is age 50 or older. An empowered client will demonstrate initiative, self-direction and autonomy by taking an active, rather than passive role in her personal health maintenance. What this means is that the empowered client will: 1) seek mammography screening referral from her health care provider when needed; 2) openly discuss any perceived discomfort barriers related to mammography, such embarrassment, anxiety, pain or others with her health care provider and with the mammography technician who conducts the mammography; and 3) seek out necessary assistance from 70 community agencies when there are barriers related to cost of mammography, or hardships related to the inconvenience of obtaining the mammography screening. The CNS has the advanced knowledge to understand the complexity of factors that contribute to compliance, and the barriers that may contribute to non-compliance. The CNS also has skills to apply theory using critical thinking, and nursing judgement to implement care and recommend mammography for their clients and assist clients to overcome barriers to screening. Affgptjgg and Chaggjpg Health Epljpy CNS's who function within the extended nursing role, delivering care to clients in the primary care setting, are making a valuable contribution to the delivery of primary care. The CNS can become an advocate for women, speaking in an authoritative voice, and interceding for women to help make women's health a priority. CNS's are in a key position to participate in health care reform, they must be directly involved in all issues that affect women. The goal of the CNS is to help improve access to health care for women and to help women overcome barriers to mammography screening. The CNS can help women overcome barriers to mammography by participating in strategies at the individual level and~also participating in strategies at the systems level, that relate to the health care system and national health policy. The nation's CNS's should join the crusade to help improve access to care for all women. At an individual level, CNS's within their clinical practices need to participate yearly during October, in the National Breast Cancer Awareness Month, and promote the message to all women by urging women to "find it before they can feel it" (p.3) and by 71 making mammography referrals following ACS guidelines and encourage women to participate in mammograms (Tau, 1994). In addition, the CNS is advanced practice needs to be active and participate in all community and national efforts to overcome barriers to mammography. CNS's need to develop strategies to change health care policy, in an effort to increase access to preventive care for women. CNS's need to organize and coordinate to achieve a common goal. CNS's have a valuable role to play in the design and delivery of a new and improved health care system. Thereby, CNS's need to develop strategies to enable them to participate in promoting the passage of health care reform to increase accessibility to mammography screening. A successful strategy, to change health care reform begins with the understanding that through, unity, numbers, coalitions and relationships power is obtained. If CNS's are going to actively participate to change health care reform to help increase access to screening services for low income women, then CNS's must start, by participating in task forces, joining professional organizations, community agencies, special interest groups and others who share this vision and want to affect social change to help increase access to mammography for women. CNS's need to be active politically, and have an understanding of who participates in the delivery of primary care such as A) providers of services (public and private; local, state and federal; B) payers of services (medicare, medicaid and private insurance companies; and C) policy makers (the board of health, community governments, hospitals, and at the state level house and senate committees. Furthermore, in order to actively participate in health care reform CNS's must understand how policy is changed. CNS's must monitor 72 all health care legislation, know how laws are changed and support legislators that promote the ANA and are capable of introducing bills that can help increase access to health care for women and thus overcome the some of the existing barriers to mammography screening such as non- compliance due to cost of the procedure. W The goal of this research was to add to the existing knowledge by further exploring barriers to mammography screening. Barriers explored included lack of physician recommendation, discomfort of mammography, and the cost or inconvenience of mammograms. However, study results showed that the only barrier to screening was cost of the mammogram. Study data did not support the hypothesis that lack of physician recommendation, discomfort or inconvenience were barrier. However, the problem remains that mammography continues to be underused. If compliance with mammography is to increase, it will be necessary to continue to promote further nursing research related to barriers that prevent women from obtaining mammography. It is suggested that this study be repeated, and that further research related to barriers be conducted, since this study may have had some limitations related to the fact that the sample was a convenience sample and since the demographics of the study indicated that there were 93% caucasian women and only a few minorities; and because 40% of the women were in the younger age group. Future research should be more representative of the population at large, and it should consist of a random sample rather than a convenience sample and include a larger percentage of minorities, including black women, and a larger percentage of women who are elderly. 73 Results from this study reveal that discomfort was not a barrier to screening for a majority of women. Only about one—third of the women perceived discomforts related to mammography. Therefore it is recommended that future research be conducted further explore discomfort. Criteria for inclusion into this study involved women who had never had a mammogram, or who had not had a mammogram within 5 years prior to the study. It is interesting to note that many of these women reported perceived discomforts related to the procedure. It would be beneficial to explore where perceptions of discomfort originate. For ' example, are they pre-conceived by the women themselves, such as those involving feelings of embarrassment and anxiety about the procedure? Are the perceived discomforts due to rumors or exaggerations heard from friends or relatives who have undergone the procedure? Are these perceptions of discomfort only the result of subjective fears of the unknown? It is possible that a survey format using telephone interviews, may reveal more information regarding barriers. Further research to explore discomfort also is suggested by forming focus groups of women who have had a mammogram, so that perceptions of discomfort such as pain, anxiety, unpleasantness, embarrassment and other concerns can be verbalized by women once the actual mammogram has been completed. Furthermore, women may be asked what they are going to tell other women who may not have had a mammogram about mammography. Also, further research should be done to evaluate access barriers to mammography that are related to cost. As previously mentioned, many of the women in the sample revealed that their insurance did not cover screening mammography. Nursing research is needed to evaluate the 74 proportion of insurance companies currently providing coverage for screening mammography. If results indicate that insurance are not covering screening mammography, then CNS's could be advocates, for their clients. Through legislative interventions and networking with other providers, the CNS can attempt to change public policy and relevant legislation. In addition, although this study reveals that inconvenience is not a barrier to mammography, there may have been limitations due to the location. Future research to continue to explore the inconvenience of mammography also is recommended, selecting women in rural communities and evaluating the distance to the nearest mammography facility. Also since inconvenience may involve more than distance therefore, more questions need to be asked relevant to what makes mammograms inconvenient. Many studies in the literature suggest that lack of physician recommendation is a barrier to screening, specially among elderly women and minorities. Results of this study are inconsistent with the literature, since lack of physician recommendation was a barrier for only 28% of the sample. Among the possible explanations, it could be due to the fact that most of these women were younger, mostly were white, and only a few were minorities. In addition, although this research targeted rural communities, some of the women may have lived in urban areas near large universities where providers are more informed about ACS guidelines than in other areas. Therefore, continued research related to lack of physician recommendation may be beneficial, and may provide more information related to this barrier. Also research related to provider referral may 75 be interesting, targeting advanced practice nurses in primary care settings, in an effort to evaluate their screening practices. W91 This study was a secondary, descriptive analysis which used the HBM as a conceptual framework to explore barriers to mammography screening. Results of this study indicated that barriers to mammography screening related to cost prevent women from participating in mammography screening. In this study cost of the mammography procedure was a barrier for 70% of the participants. Study findings showed that women some women were uninsured or underinsured, since the women indicated that mammography was not covered by their insurance, and that many low income women are not able to afford screening mammograms. Cost is a barrier to mammography which is also well documented in the literature. Therefore, cost related barriers to mammography screening need to be further assessed and addressed. In addition, findings also indicated that other clinically significant barriers existed for a small portion of women. These barriers were related to discomfort, lack of physician recommendation, and inconvenience. Therefore, CNS's in the clinical setting, prior to making a mammography referral, need to assess and explore with each individual clients perceived barriers to mammography, and carefully evaluate to determine which barriers could affect compliance with mammography. Hhen barriers are encountered CNS's must actively participate in combination with clients to overcome barriers and to assist clients to participate in screening. 76 Furthermore, research related to mammography barriers must continue if health care providers and advance practice nurses are to overcome barriers and eliminate them. Rimer and Trock (1991) believe that without the strong intervention of all health care providers, the potential for mammography to reduce avoidable breast cancer will go unrealized. Therefore, CNS's must all participate in the efforts to decrease barriers to mammography and increase referral rates, and continue to encourage women to comply with this technologically advanced, life- saving screening behavior. REFERENCES REFERENCES American Cancer Society. (1994). 8 ° n er ts Eigurgp. Atlanta: Author. Anda, R.F., Sienko, D.G., Remington, P.L., Gentry E.M., & Marks, 0.5. (1990). Screening mammography for women 50 years of age and older: Practices and trends, 1987. Ame ' r a Preve ugaicing, 6(3), 123-128. Ansel, D.A., Dillard, 0., Rothenberg M., Bork, J., Fissoti, G.F., Alagaratnam, D. Shiomoto, G., Gunther, T., & Greager J.A. (1988). Breast cancer screening in an urban black population. Canpau, §2(2), 425-428. Ca r Scr nin And Detection in Mic i an: R comme dation t Rggupe Mortality, (1990). Michigan Dept of Public Health p. 1-71. Brown, H. G. (1989). Motivating women to participate in breast cancer detection. Cancar, 64(12), 2690-2691. Campbell, H.S. 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The value of mammography screening in women under age 50 years. JANA, 259(10), 1512-1519. Feig, S.A. (1988). Decreased breast cancer mortality through mammographic screening: Results of clinical trials. Radiology, 161(3), 659-665. Fox, 5., Baum, J.K., Klos, D.S.,& Tsou, C.V. (1988). Breast cancer screening the underuse of mammography. Bagiplpgy, 166(2), 607-611. Given, 8. A. & Given, C. H. (1984). Creating a climate for compliance. We). 140-147 Hamwi, D.A. (1990). Screening mammography: Increasing the effort toward breast cancer detection. Nursa Puagtitipper, 15(8), 27-32. Hayward, R.A., Shapiro, M.F., Freeman, H.E., a Corey, C.R. (1988). Hho gets screened for cervical and breast cancer? Results from a new national survey. Archives of Internal Medicine, 148(5), 1177-1181. Hortobagyi, G.N., McLelland, R., & Reed F.M. (1990). Your Key role in breast cancer screening. Patient Cara, 25(13), 82-90. Humphrey, L.L., & Ballard, D.J. (1989). Early detection of breast cancer in women. Primary Care, 16(1), 115-129. Janz, N.K., Becker, M.H. (1984). The health belief model: A decade later. Health Education Quarterly, 11(1), 1-47. Kasl, (1974). The health belief model and behavior related to chronic illness. In Becker, M. H. (Ed), Thg Hgalth Baligf Mpugl and Peuspgal Haalth Behavior. New Jersey: Charles E. Slack. Kruise, J., & Phillips, D.M. (1987). Factors influencing women's decision to undergo mammography. Dustetrics & Gypecplpgy, 70(5), 744-747. Kurtz, M.E., Kurtz, J.C., Given, 8. & Given, C. (1994, January). Promotion of breast cancer screening in a work site population flaalth Care fpr Homen Internatipnal, 15, 31-42. Lane, D.S. & Burg, M.A. (1990) Breast Cancer Screening. Nam Yong Stata qurgal pf Mgdicing, 99(6), 288-292. Lantz, P.M., Remington, P.L., & Soref, M. (1990). Self-reported barriers to mammography: Implications for physicians. Hiscpnsig Medigal qurnal, 89(6), 602-606. Lauver, D. (1987). Theoretical perspectives relevant to breast self- examination. Advances in Nur§ing Science, 9(4), 16-24. 79 Lerman, C, Track, 8., Rimer, B. K, Boyce, A. Jepson, C. & Engstrom, P. F. (1991). Physiological and Behavioral Implications of Abnormal Mamograms Wm 657- 661 Mammography Screening in Asymptomatic Homen Aged 40 Years and Older Council on Scientific Affairs. (1989). QAMAu_2§1(17), 2535-2541. Mettlin, C. (1991). Breast cancer risk factors. Qappprt_§9(7), 1905- 1912. Mikbail, B. (1981). The health belief model: A review and critical evaluation of the model, research and practice. _gyappg§_1p WU) 65- 80 Miller, A. B. (1991). Is routine mammography screening appropriate for women 40- 49 years of age? 0 rn f Pr entiv 1(1), 55- 62. Nemeck, M.A. (1990). Health Beliefs and Preventive Behavior: A review of research literature. AAQH qurpal, 83(3), 127-138. Richardson, J.L., Marks, G., Solis, J.M., Collins, L. M., Birba, L.Hisserich, J. (1987). Frequency and adequacy of breast cancer screening among elderly hispanic women. Prayentiva Mauigiga, 15(6), 761-774. Rimer, B.K., Keintz, M.K., Kessler, H., Engstrom, P.F. & Rosan,J.R. (1989). Why women resist screening mammography: patient related barriers. Radiplogy, 172(1), 243-246. Rimer, B. K, Trock, B. Balshem, A. Engstrom P. F, Rosan, J. & Lerman, C. (1990). Breast screening practices among primary physicians: Reality and Potential. Jo our rpal of Amaripag Bpapd at Family Euagtice, 3(2) 26- 34. Rimer, B.K., Track, 8., Engstrom, P.F., Lerman, C. a King, E. (1991). th do some women get regular mammograms? American Journal of Pravgptive Medigine, 2(2), 69-74. Rosenstock, I.M, (1974). The health belief model and preventive health behavior. In Becker, M. (Ed), Tug Health Beliaf Model and Egrppgal_flaaltp_flgpayippu New Jersey: Charles B Slack. Rosenstock, I.M., Strecher, V.J., Becker, M.H. (1988). Social learning theory and the health belief model. Heal du ion r 15(2), 175-183. Rutledge, D.N., Hartman, R., Kinman, P.O., Hinfield, A. (1988). Exploration of factors affecting mammography behaviors Preventiva Magigigg, 17(4), 412-422. 80 Schechter, C., Vanchieri, G.F., & Crofton, C. (1990). Evaluating Homen's attitudes and perceptions in developing mammography promotion messages P ic Health R rts 05(3), 253-256. Schwartz, J.S., Lewis, C.E., Clancy, C., Kinosian, H.S., Radany,M.H. & Koplan J.P. (1991). Internists' practices in health promotion disease prevention. MW“). 46-52. Smith, R.A., & Haynes, S., (1991). Barriers to screening for breast cancer. Qaugar, 69(7), 1968-1977. Stein, J.A., Fox, S.A., Murata, P.J., & Morisky, D.E. (1992). Mammography usage and the Health Belief Model. flpaltp_§gupatipp Quarterly, 19(4), 447-462. Strax, P. (1988). Control of breast cancer through mass screening from research to action. Cancer, 13(10), 1881-1887. Taplin, S., Anderman, C. & Grothaus, L. (1989). Breast cancer risk and participation in mammographic screening. Amerigap qurmal pf Euplig Health, 79(11), 1494-1498. Tau, J. (1994). Early detection saves lives. Advance for Nurse Pragtitiogara, 12(2), 3-4. Vernon, S.H., Vogel, V.G., Halabi, S., Jackson, G.L., Lundy, R.O. & Peters, G.N. (1991). Breast cancer screening behaviors and attitudes in three racial/ethnic groups. Cancer, 69(1), 165-180. Heinberger, M., Saunders, A.F., Samsa, G.P., Bearon, L.B., Gold, D.T., Brown, T., Booher, P. & Loehrer, P. (1991). Breast cancer screening in older women: Practices and barriers reported by primary care physicians. Journal pf American Geriatric Spgiety, 99(1), 22-29. Hertheimer, M.D., Costanza, M.E., Dodson, T.F., D'Orsi, C., Pastides, H., & Zapka, G. (1986). Increasing the effort toward breast cancer detection, JAMA, 255(10), 1311-1313. Hheat, M.E., Kunitz, G., & Fisher, J. (1990). Cancer screening in women: A study of house staff behavior. Amarican Journal of Prgventive whim, 130-136. Zapka, J.G., Harris, D.R., Stoddard, A.M., & Costanza, M.E. (1990). Validity and reliability of psychosocial factors related to breast cancer screening. Eyaluation & the Health Profeasions, 15(3), 356- 367. ' Zapka, J.G., Stoddard, A.M., Costanza, M.E., & Greene, H.L. (1989). Breast cancer screening by mammography: Utilization and association factors. American Jourpal of Public Health. 79(11), 1499-1502. APPENDIX A The Rural Breast Cancer Project 81 MW Methods for The Rural Breast Cancer Project Ihp_Bural_9rgapt_§appgr_£rpjppt was a project funded by a grant from the American Cancer Society-Michigan Division to provide breast cancer screening to women in Michigan. The Rural Breast Cancer Project was conducted by researchers B. Given and C.H. Given and co-sponsored by Michigan State University Breast Cancer Center, Ingham County Health Department, the Cooperative Extension Service, community hospitals and health care providers. Four counties were selected to begin the pilot program. These counties were: Ingham, Livingston, Shiawassee and Barry. The study design for this project was a descriptive research using a convenience sample of low income women, living in rural regions of Michigan. The goal of the project was to provide screening services to under-served women living in rural populations and to recruit many women to participate in breast cancer screening and obtain screening mammography. Also this project served as a pilot study to establish a model for other breast cancer screening programs and then to serve as consultants for other communities wishing to use this model to establish their own breast cancer screening program. Louie's—1211 Promotional material for the Rural Breast Cancer Project was disseminated by the American Cancer Society, the Ingham county health department, the Cooperative Extension Service and primary care providers. Any woman who attended an educational event sponsored by any one of the above organizations or telephoned the Cooperative Services could choose to participate in the project. Women who were interested in participating in the project needed to fill out a registration form 82 and sign an informed consent form. They were then given a voucher to get a screening mammogram. Population criteria for inclusion in the study specified that women must: 1) be 40 years old or older; 2) have never had a screening mammograms, or have not had a mammogram within the last 5 years; 3) have never had breast cancer; 4) not be pregnant or nursing; and 5) have no insurance which pays for screening mammograms. Potential participants were any woman which met eligibility criteria, filled out the registration form, signed the consent form, filled out the questionnaire and obtained a voucher for screening mammography from one of the four research sites. Sample Target group for this project consisted of asymptomatic women age 40 and older who had not had a screening mammogram within the last 5 years. Sample for this research consisted of n-226 women who met study criteria and participated in the Rural Breast Cancer project by filling out the questionnaire and signing the consent form. The sample was mostly from Livingston with 58.4% (n-132) of participants, followed by Ingham 37.2% (n=84), Shiawassee 4.0% (n-9) and Barry 4% (n-l). F' ld Proce ure The study was planned by the Rural Screening Task Force. The goal of the Rural Screening Task Force was to use community networks and community resources to provide screening services to under-served rural populations. The task force chose four counties for the initial program. They were: Barry, Ingham, Livingston, and Shiawassee. The project targeted rural women, at least 40 years of age who had not had a mammogram in the last year. 83 Homen heard about the project through promotional material disseminated by the ACS, the Cooperative Extension Service, the health department and/or their health care providers, or women learned about the project by attending an educational event sponsored by one of these agencies. Components of the Rural Breast Cancer Project included: 1) providing information and educational videotapes regarding breast cancer; 2) information about mammography and how to do BSE; and to those recruited, 3) distribution of questionnaires; 4) clinical breast exam; and 5) low cost mammography screening. At the educational event a project representative described the program to women who were interested in participating. To register for the program women who desired to participate filled out a registration and informed consent form. Those recruited as project participants were asked to complete a study questionnaire, which was designed to discover more about women's attitudes and practices regarding breast cancer screening. Questionnaires were collected by project representatives. Project participants then received a clinical breast exam, either in the health department or by their primary care provider. Once the breast exam was completed, the providers signed a mammography voucher indicating that a CBE had been completed. Project participants then scheduled an appointment to receive a reduced rate mammogram. The cost of the mammogram was $55.00. Women who stated that they were unable to pay the low cost of the mammogram received a voucher for a free mammogram. Desc i t'o o n trument The instrument used for this study was a questionnaire entitled Bural Breast tagger Sgrgapipg Prpjept modified by researchers 8. Given 84 and C. H. Given from the original questionnaire entitled flgaltn_Qarg w i r . The original questionnaire was initially used as a pretest to investigate attitudes, intentions and practices regarding breast cancer screening and was administered to women employees at diverse work sites. The questionnaire 3ura1_Qrpapt_Qapppr_§pragp1pg_£rpjgpt consists of a total of 13 pages and 37 questions. Questions vary to include questions with dichotomous yes-no answers, multiple choice or four- point Likert scale. The purpose of the instrument was to learn more about women's attitudes toward breast cancer screening (See Appendix C). Dat ol ' P Data was collected from the self-administered questionnaires given to project participants at each of the four research sites. The questionnaire entitled Rural Breast Cancer Screening Project. After obtaining the client's written consent all subjects were asked to complete a self-administered structured questionnaire. The questionnaires were administered at the four research sites. Upon completion of questionnaire, project participants returned the instrument to project personnel for coding. The instruments were pre- coded with the date of completion, site and participant code number. WING—tam The rights of the respondents were protected through adherence to standard criteria set forth by the Michigan State University Committee on Research Involving Human Subjects. At initial contact with the potential subject the program was described along with the dissemination of educational material regarding breast cancer and breast cancer screening. All project participants signed a registration-informed 85 consent form prior to participation in the program. Questionnaire given to participants gave a brief explanation of the purpose of the questionnaire. Confidentiality and anonymity were assured through the use of code numbers on the instrument used for data collection. 1111.11.11 Validity refers to the degree to which an instrument measures what it is intended and presumed to measure. Content validity is concerned with adequate sampling of content. There are no objective methods to confirm the adequacy of content coverage of an instrument. One way to establish validity is by relying on experts to determine if items are representative of the trait to be measured (Polit & Hungler, 1983). Content validity is concerned with establishing the degree to which the items comprising a scale represent the characteristics to be measured (Polit & Hungler, I983). The scales that were used in the Rural Breast Cancer Screening Project questionnaire were derived from scales developed from a literature review, and the expert knowledge and judgement of the principal investigators and research colleagues. Face validity, determined by items to see if the instrument contains important items to measure the variables related to barriers to mammography screening, was based on the expert opinion of the principal investigators and colleagues. The results from the factor analyses obtained by the original investigators in the pilot study were used to suggest ways to revise this instrument and so to improve the measures of the constructs. Mom Measures of reliability, or internal consistency were conducted on the original instrument by principal co-investigators 8. Given & C.H. 86 Given. Those results were used to improve the questions in revised questionnaire used in this study. Internal consistency refers to the extent to which all of the instruments items, or subscales, measure the same attribute consistently within the subjects (Polit & Hungler, 1983). A measure is reliable to the extent that application of the instrument produces the same results repeatedly (Rossi & Freeman). Reliability analysis was conducted on original instrument. The instrument contained separate scales for the different item constructs. Cronbach's Alpha yielded coefficients ranging from 0.78 to .91 for the instrument scales. APPENDIX 8 Study Questions 87 Muslim Barrier 1: Lack of physician recommendation Question 12v. Question 22. My doctor has never suggested that I have a mammogram. Strongly disagree (I) Disagree (2) Agree (3) Strongly agree (4) Has your doctor advised or discussed mammography with you? Yes No Barrier 2: Discomfort related to mammography procedure Question 12c. Question 12e. Question 12b. Question 12f. Question 121. A mammogram is an unpleasant procedure Strongly disagree (1) Disagree (2) Agree (3) Strongly agree (4) A mammogram is painful Strongly disagree (1) Disagree (2) Agree (3) Strongly agree (4) A mammogram is an embarrassing procedure Strongly disagree (1) Disagree (2) Agree (3) Strongly agree (4) A mammogram would make me feel anxious Strongly disagree (1) Disagree (2) Agree (3) Strongly agree (4) A mammogram makes me feel uncomfortable Strongly disagree (1) Disagree (2) Agree (3) Strongly agree (4) Barrier 3: Cost and Inconvenience of mammography/Cost of obtaining a mammogram. 88 Question 12d. A mammogram is a hardship due to cost Strongly disagree (1) Disagree (2) Agree (3) Strongly agree (4) Inconvenience of obtaining a mammogram Question 129. A mammogram is convenient to arrange Strongly disagree (1) Disagree (2) Agree (3) Strongly agree (4) Question 12i. A mammogram is not available in my area Strongly disagree (1) Disagree (2) Agree (3) Strongly agree (4) APPENDIX C Rural Breast Cancer Screening Project Questionnaire 89 RURAL BREAST CANCER SCREENING PROJECT Michigan State University Comprehensive Breast Cancer Center, American Cancer Society Michigan Division, Community Hospitals, Health Care Providers, 3 The Cooperative Extension Service Dear Participant. The following questions seek to learn more about women's attitudes towards breast cancer screening. We hope that you will consider each question carefully and that you will return the questionnaire, which should take 10-15 minutes to complete. All information will be kept strictly confidential. Thank you. How did you hear about this screening project? (check all that apply) Television (a) __ Poster/Brochure (9) Friend (b) __ Health Fair (h) Family member (c) __ Hospital/Health Dept (i) Newspaper (d) __ American Cancer Society (j) Church (e) __ Cooperative Ext Service (k) Physician/Nurse (f) ‘__ Other (l) specify NAME (Last) (First) (Middle) ADDRESS CITY TELEPHONE (Day (Evening) TODAY'S DATE PERSONAL HISTORY 1. Please write in the date of your birth (HRITE IN) / / mo. Date yr. 2. In the past five years, how many times have you had: a. Complete physical exam ___ (HRITE IN #) b. Pap smear & pelvic exam ___ (HRITE IN #) 90 3. Have you ever used birth control pills? (Check one) _ Yes (1) _ No (2) (IF NO< so TO QUESTION #4) If YES, for approximately how many years have you taken (or did you take) birth control pills? (NRITE IN TOTAL NUMBER OF YEARS) 4. Have you ever been pregnant? (CHECK ONE) ___ Yes (1) __ No (2) (IF NO, GO TO QUESTION #5) a. If YES, How many pregnancies have you had?___ (write in) b. How many full-term deliveries (8-9 months) have you had? (write in) __— c. Hhat was your age at the time of the delivery of your first baby? __ (Hrite in your age) 5. Are you pregnant or nursing? ___ Yes (1) _ No (2) 6. Do you have any nipple discharge that comes out by itself? 7. Have you reached menopause? (CHECK ONE) (___ Yes (1) _ No (2) ___ Don't Know (3) a. If YES, at what age did you begin menopause? (HRITE IN AGE) 8. Have you ever had a hysterectomy (uterus/womb removed)? (CHECK ONE) ___ No (1) Uterus only (2) Uterus and ovaries removed (3) Don't know (4) Other (5) (Please specify ) ve you ever been diagnosed with breast cancer? HECK ONE) Yes (1) No (2) ‘0 A: ('50 91 10. Have you ever had a mammogram? (CHECK ONE) _ Yes (1) .___ No (2) (GO TO QUESTION 10-B, PAGE 4) ___ Don't Know (3) GO TO QUESTION 12, PAGE 5) a. if YES, was this: (CHECK ONE) ___ A screening mammogram ___ For a diagnosis (GO TO QUESTION 11) b. If NO, why have you never had a mammogram? (PLEASE HRITE IN) (GO TO QUESTION #12) 11. If YES to Question 10, about how often do you have a mammogram? (CHECK ONE) More often than every year (1) Each year (2) Every two years (3) Every three years (4) Less often than every three years (5) 11a. Hhen did you have your last mammogram? (HRITE IN) / Month Year 11b. Hhich of the following best describes what prompted your most recent mammogram? (CHECK ALL THAT APPLY) To follow up a breast problem/something unusual (1) It was part of my routine check-up (2) A health care professional recommended it (3) A friend or relative was recently diagnosed with a breast problem (4) ___ A relative or friend recommended that I have a mammogram (5) .___ I asked my physician because I felt it was necessary (6) ___ Other (7) (Please specify 12. How much do you agree or disagree with each of the following statements about mammograms? (CIBQLE ONE RESPONSE FOR EACH) STRONGLY STRONGLY 91§AGREE Dl§AGREE AGREE AQREE A MAMM GRAM: 1 2 3 4 a. Is important to remain healthy b. Is an embarrassing procedure c. Is an unpleasant procedure d. Is a hardship due to cost 92 Is painful . Hould make me feel anxious Is convenient to arrange . Causes me to worry about my health Is not available in my area . Doesn't seem necessary Is not worth the effort . Makes me feel uncomfortable . I don't know when I need a mammogram n. I have too many other worries to have a mammogram 0. I'm afraid something abnormal would be found p. Improves my chances of early detection of an abnormality q. helps me keep control of my health r. I'm just too busy to have a mammogram s. I forget when I am supposed to have a mammogram t. I am confident the mammogram will done correctly u. I want to be the first to know if something is wrong with my breasts v. My doctor has never suggested that I have a mammogram w. My health care professional has 91;- ppuraggg me from having a mammogram x. I am too old to have a mammogram y. Other comments about mammograms (HRITE IN ) a al,-Luisa '05” 13. In the next year, how likely are you to have a mammogram? (CHECK ONE) _Definitely (1) :Very likely (2) _Somewhat likely (3) —Not very likely (4) .___ _Not at all likely (5) 14. Have you ever had a Ph C nic l Bre t ' ti n flaalth Cara Professipnal? (CHECK ONE) Yes (1) ___ —No (2) (GO TO QUESTION 16) a. If YES, when was your last physical (clinical) breast examination by a health care professional? / Monthf EYEar 93 15. In the NEXT YEAR, how likely are you to have a physical (Clinical) Breast Examination? (CHECK ONE) Definitely (1) Very likely (2) Somewhat likely (3) Not very likely (4) Not at all likely (5) 16. How much do you agree or disagree with the following statements about clinical breast exams? (QIBQLE_QNE RESPONSE FOR EACH) STRONGLY STRONGLY WWMM A EHYSIEAL (CLINIQAL) BREA§I EXAMINATION: 1 2 3 4 . Is an embarrassing procedure . Is an unpleasant procedure Is important to remain healthy Is a hardship due to cost Is painful or physically uncomfortable . Hould make me feel anxious Is convenient to arrange . Doesn't seem necessary Is not worth the effort . I don't know when I need exams . I have too many other worries . I'm afraid something would be found by clinical exam I want to improve my chances of early detection of an abnormality n. Helps me keep control of my health 0. I'm just to busy to have an exam (DO-00'” ..ax¢_....a.:-Q 'h p. I forget when I am supposed to have exams q. I don't really know how to ask for an exam r. I am confident the exam will be done correctly s. My doctor has never suggested having an exam t. Other comments about clinical breast exams (HRITE IN ) The following set of questions focus on early detection of breast cancer. Early detection means finding an abnormality in early stages. For breast cancer this means when the lump is small and has not spread to other areas of the body. 94 17. If found early enough, breast cancer can be cured. (CHECK ONE) ___ Strongly Disagree (1) Disagree (2) Agree (3) ___ Strongly Agree (4) ____ Don't know (5) 18. Unless she has symptoms, a woman doesn't need a mammogram. (CHECK ONE) Strongly Disagree (1) Disagree (2) Agree (3) Strongly Agree (4) Don't know (5) 19. 4'": ammograms can detect early abnormalities likely o be breast cancer. (CHECK ONE) Strongly Disagree (1) Disagree (2) Agree (3) Strongly Agree (4) Don't know (5) 20. e a person develops cancer, it is usually too e to do anything about it. (CHECK ONE) Strongly Disagree (1) Disagree (2) Agree (3) Strongly Agree (4) Don't know (5) -¥c: era 21. arly detection would improve one's chances for cure f breast cancer. (CHECK ONE) Strongly Disagree (1) Disagree (2) Agree (3) Strongly Agree (4) Don't know (5) Of“ Have any of the following persons advised or d1§cussed clinical breast examinations (performed by a health care professional) pr mammography with you? (CHECK ONE FOR EACH) PHYSICAL (CLINICAL) BBEA§I_E£AM UAUUQGBAEHY DISCUSSED: YES NO YES NO Doctor ___ ___ ___ ___ Nurse _ __ _ _ Family __ _ _ _ Friend _ _ _ _ Other (Specify ) 23. 95 Hith regard to breast cancer screening practices, how important to you is the opinion and advice of each of the following sources for you to have a clinical breast examination and mammography? (CHECK ONE FOR EACH) Very Somewhat Not at all Important Important Important Important Doctor Nurse Family Friend Co-Horker Radio/TV Literature/ Pamphlets American Cancer Society Magazines 24. 25. Experiences of well known persons (Nancy Reagan, Ann Jullian) As compared with other women of your age, what do you think are the chances that you will develop breast cancer in the next five years? (CHECK ONE) ___ Much less than other women (1) Somewhat less than other women (2) About the same as other women (3) Somewhat higher than other women (4) Much higher than other women (5) 3': hat do you think are the chances that any woman in the USA will ave breast cancer some day? (CHECK ONE) About 1 in 5 (1) About 1 in 10 (2) About 1 in 25 (3) About 1 in 50 (4) Less than 1 in 50 (5) 26. 27. 28. 96 Hhat do you think is more likely to get breast cancer? (CHECK ONE) ___ Homen under age 50 (I) ___ Homen over age 50 (2) ___ Age makes no difference (3) ___ Don't know (4) If you were to develop breast cancer, how likely do you think it is that it would have spread before it was discovered? (CHECK ONE) Not at all probable (1) Somewhat probable (2) Very probable (3) Extremely probable (4) Can't predict (5) Finally, please tell us what one or two things would help you to get mammograms regularly? I. N BACKGROUND This final series of questions asks for background information about you, including your employment and occupation. He remind you that all the information you provide will be held in strictest confidence and will not be linked to you as an individual. 1. What is your current employment status? (CHECK ONE) Hork full-time (l) Hork part-time (2) Volunteer (non-salaried) (3) Retired (4) On leave or disability (5) Other (6) (Please specify ) How long have you been employed with your present company or organization? a. Please HRITE IN number of years employed: b. Please HRlTE IN the title of your position: Do you have health insurance? (CHECK ONE) ___ Yes (1) _ No (2) 97 Is your insurance coverage provided by: (CHECK ALL THAT APPLY) Your employer Your spouse Other family member's employer Self pay Medicaid Medicare Not insured Other (please specify ) Does your health insurance pay for pprggpipg physical breast exams by health care professionals? (CHECK ONE) Yes (I) _ No (2) ___ Don't Know (3) Hhat does your health insurance pay for screening mammograms? (CHECK ALL THAT APPLY) Routine mammography, when no known problem exists (1) Only for referral mammographies, to rule out suspected abnormality (2) '___ Follow-up for known abnormalities (3) ___ Don't know (4) Hhat is your race or ethnic background? (CHECK ONE) Hhite (1) Black (2) Hispanic (3) American Indian/Alaskan Native (4) Chinese (5) Japanese (6) Filipino, Hawaiian, Korean, Vietnamese (7) Other (8) (Please specify Hhat is your marital status? Are you: (CHECK ONE) Single-never married (1) Hidowed (2) Married or living as married (3) Separated (4) Divorced (5) Other (6) (Specify ) What is the highest grade (or level) of education that you have completed? (CHECK ONE) Less than 8th grade (1) 8th grade to 11th grade (2) High school graduate/GED (3) Post high school, trade or technical school (4) One to three years of college (5) College graduate (6) Graduate and/or professional school (7) 98 9. Hhich category best describes your total combined hpusghpld income before taxes last year (from all adult sources living in your household (CHECK ONE-OPTIONAL) ___ Less than $15,000 (1) ___ $15,000-$20,000 (2) ,___ $21,000-$25,000 (3) .___ $26,000-$30,000 (4) ___ $31,000-$35,000 (5) ___ $36,000-$40,000 (6) ___ $41,000-$45,000 (7) ___ $46,000-$50,000 (8) ___ More than $50,000 (9) Thank you again for your time and interest in completing these questions. If you have any additional comments about experiences with breast cancer, screening, or the factors which you feel influence women's breast cancer screening practices, please feel free to note these below. THANK YOU!