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(u I» 4”", .g; 5:, g - 5;: 31.13:;‘4 I .‘_ ’ a h v! n u r 3v?“ z! ¢ ;% ‘9 ‘ ‘_ .z‘ , ,a ‘ 134-. ‘ . .. $3 mu. , - - fl “ m. , ‘ ! .' :_ ' “4‘", ' «3“: p “2" "It. ‘ . - ' u ‘ N _ h I» ~ 5 ‘ . y .' y ‘ v > uh'fi.“ ,,. ‘Illlllllllllllllllll (1396) Date 0-7 639 This is to certify that the thesis entitled BARRIERS TO ADHERENCE T0 MAMMOGRAPHY GUIDELINES AMONG EMPLOYED WOMEN AGES 42-65 presented by Rose Mary Ross 0 has been accepted towards fulfillment of the requirements for matters—degree in Mn;— AZ; 7 Major professor 11-17-95 MS U is an Affirmative Action/Equal Opportunity Institution LIBRARY Michigan State University « PLACE ll RETURN BOX to roman thb chockout from your rocord. TO AVOID FINES rotum on or botoro doto duo. DATE DUE DATE DUE DATE DUE MSU to An Affinnotivo ActionlEquol Opponuntty trunnion W ”3-0.1 BARRIERS TO ADHERENCE TO MAMMOGRAPHY GUIDELINES AMONG EMPLOYED WOMEN AGES 42-65 By Rose Mary Ross A THESIS Submitted to Michigan State University in partial fulfilhnent of the requirements for the degree of MASTER OF SCIENCE IN NURSING College of Nursing 1995 ABSTRACT BARRIERS TO ADHERENCE TO MAMIVIOGRAPHY GUIDELINES AMONG EMPLOYED WONIEN AGES 42-65 By Rose Mary Ross One of nine American women will at some time be diagnosed with breast cancer. Early detection is directly related to increased survival rates. Mammography is the best tool for early detection. This study examined whether the barriers reported in the literature apply to women who have had a mammogram but are noncompliant with guidelines of the American Cancer Society for subsequent mammograms. Data was obtained from a questionnaire survey, Assessment of Barriers and Facilitators to Screening for Breast Cancer--a Worksite Approach (Given, B., Given, C.W., & Dimitrov, N., 1991, MDPH). The sample included 179 employed women ages 42-65 who had had a mammogram but had not had their next mammogram within screening guidelines. The sample did not agree that cost, lack of physician referral, discomfort, fear of finding cancer, inaccessibility, and lack of knowledge were barriers to adherence to mammography screening guidelines. Further research is needed to discover other barriers to adherence to screening mammography guidelines. To my husband, Truman, for all of his love and support, and to my children, J. T., Jennifer, Luke, and Clinton for allowing me to pursue my dream. ACKNOWLEDGMENTS I would like to express my appreciation to Barbara Given PhD, RN, F AAN , chairman of my committee for her guidance, to Patty Peek MS, RN, PNP for her support, and to Rachel Schiffman, PhD, RN, for her encouragement and editorial help. I would like to thank WE. Bontrager MD. for his many years of encouragement, and many thanks to Wayne Wahl MD. for his mentoring. I would also like to thank my Mom and Dad for a lifetime of love and support, it has been greatly appreciated. TABLE OF CONTENTS LIST OF TABLES ...................................................................................... vii LIST OF FIGURE ...................................................................................... viii Introduction ................................................................................................... 1 Background .............................................................................................. 1 Purpose of Study ...................................................................................... 4 Review of Literature ...................................................................................... 5 Conceptual Definition of the Variables ..................................................... 5 Development of Theoretical Model ........................................................ 10 Review and Synthesis of Literature Within the Context of This Study ..... l4 Methodological and Conceptual Problems in the Literature .................... 22 Methods ...................................................................................................... 25 Research Design ..................................................................................... 25 Sample ................................................................................................... 25 Data Collection ...................................................................................... 26 Operational Definition of Variables and Scoring ..................................... 26 Instrumentation ....................................................................................... 29 Data Analysis ......................................................................................... 29 Limitations and Assumptions .................................................................. 31 Protection of Human Subjects ................................................................. 31 Findings and Interpretation .......................................................................... 32 Sociodemographic Characteristics .......................................................... 32 Barrier Variables .................................................................................... 34 Discussion ................................................................................................... 46 Limitations ............................................................................................. 46 Implications for Advanced Nursing Practice ........................................... 49 Recommendations for Further Research ................................................. 58 Summary ................................................................................................ 61 APPENDIX A Health Care Practices: A Worksite Survey ......................... 62 APPENDIX B Protection of Human Subjects Approvals ............................ 82 LIST OF REFERENCES ............................................................................. 84 Table 1 Table 2 Table 3 Table 4 Table 5 Table 6 LIST OF TABLES Sociodemographic characteristics of noncompliant women .......... Frequency and percent of cost hardship barrier related to mammography ............................................................................. Frequency and percent of discomfort items related to mammography ............................................................................. Frequency and percent of anxiety items related to mammography ............................................................................. Frequency and percent of inaccessibility items related to mammography ............................................................................. Frequency and percent of lack of knowledge of ACS guidelines vii ..33 ..35 ..39 ..41 ..43 .45 LIST OF FIGURE Figure 1 Health Belief Model and Regular Mammography Acquisition ....... 13 viii Introduction Bacgmund Breast cancer is the most frequently diagnosed form of cancer and the second major cause of cancer death in American women. The American Cancer Society (ACS) estimated 182,000 new cases of breast cancer to be diagnosed in 1995 (American Cancer Society [ACS], 1995). One of nine women can expect to experience breast cancer in her lifetime (ACS, 1995). A woman’s chances of survival are directly linked to the stage of disease at diagnosis. Early detection prolongs survival and reduces morbidity. A woman’s five year survival rate decreases as the tumor size increases and the probability of nodal metastasis increases. Currently tumor size and nodal status are reliable predictors of the outcome for breast cancer (Henson & Ries, 1990). Only 50% of breast cancers are detected before metastasis to the lymph nodes and 75%-90% of all breast cancers are found, not by mammogram or clinical exam but by women themselves (N ettles-Carlson, 1989). Unfortunately, women who discover a lump in their breast by self palpation are likely to be in the later stages of breast cancer involving metastasis to the lymph nodes. Although there are known risk factors such as family history of breast cancer, early menarche, nulliparity greater than age 30, and late menopause, 75% of women who develop breast cancer have no known risk factors other than increasing age (Basset, Manjikian, & Gold, 1990) The best prognosis for survival is when diagnosis is made when lesions are small without axillary node metastasis. It was previously thought the spread of breast cancer was an orderly progression from breast to axillary nodes and then to distant sites. Now it is believed that breast cancer can be a systemic disease early on. But there is thought to be a two to three year preclinical phase in which breast cancer can be detected by mammography before the cancer spreads (Hamwi, 1990). The five year survival rate for localized breast cancer has risen from 78% in the 1940’s to 94% today. Breast cancer in situ (non-invasive) has a five year survival rate approaching 100%. Breast cancer with regional spread has a five year survival rate of 73% and cancer with distant metastasis has a five year survival rate of 18% (ACS, 1995). Therefore, a woman’s five year survival rate vastly diminishes as the breast cancer metastasizes from the original breast lump. It is imperative for breast cancer to be detected in the very early stages if a high survival rate is to be realized. Breast cancer screening has three important components, monthly breast self-exam, yearly clinical breast exam by a health care provider, and mammography. Seventy-eight per cent of physicians are complying with ACS recommendations for annual clinical breast exams (ACS, 1990), and women are being taught self breast examination. The missing component is regular mammography. Mammography is the most sensitive screening tool available for early detection of breast cancer. Breast lesions can be identified with mammography several years before they can be palpated in the breast tissue. Thirty-seven per cent of physicians are complying with ACS recommendations for regular mammography (ACS, 1990). According to the Michigan Department of Public Health (19903) breast cancer mortality rates could be reduced by 30%-50% through early detection utilizing mammography. Ifbreast cancer is detected in its early stages before metastasis, survival rates approach 100% (MDPH, 1990a). The American Cancer Society currently recommends a baseline mammogram by the age of 40, a mammogram every one to two years during ages 40-49, and then a yearly mammogram at age 50 and older (ACS, 1995). The number of women utilizing mammography has increased significantly over the last few years. A 1990 Mammography Attitudes and Usage study (Mortality and Morbidity Weekly Report, 1990) indicates that 64% of women aged 40 or greater reported at least one mammogram. But only 31% were following mammography screening guidelines. A repeat study in 1992 found 74% had had at least one mammogram and 41% were following guidelines (Horton, Romans, & Cruess, 1992). Miller and Champion (1993) found 81% of women had had one mammogram and only 23% of women had followed guidelines for the three preceding years. It is not clear why so few women are following the recommended guidelines for mammography. There are most likely barriers that influence women and deter them from obtaining a regular mammogram. Some of the documented barriers to screening mammography are cost, lack of transportation, inconvenience, lack of time, lack of knowledge, fear and distrust of radiation, fear of finding cancer, discomfort, inaccessibility, lack of physician referral, and a belief that a mammogram is unnecessary in the absence of symptoms (Bastini, Marcus, & Hollatz-Brown, 1991; Glanz, Resch, Blake, Gorchov, & Rimer, 1992; Horton et al., 1992; Miller & Champion, 1993). There are quite a few studies evaluating barriers to mammography in the last ten years, however very few address barriers to regular mammography. Early studies were concerned about barriers to a single mammography since few women ever had a mammogram. Today the percentage of women who have had at least one mammogram is increasing and emphasis should now be focused on identifying barriers to regular mammography according to recommended guidelines. Pumse of Study At this point in time there are no definitive strategies for prevention of breast cancer. The only line of defense against this killer disease of American women is early detection and treatment. The best early detection tool is the screening mammogram. However one mammogram every few years in a sporadic fashion may not be effective. Marnmograrns must be obtained on a regular basis such as following the recommendations of the ACS. Regular mammography is imperative if breast cancer is to be diagnosed in the very early stages when it is most curable. Since the technology is available, why are women not following the guidelines for early detection especially those who have had at least one mammogram? The purpose of this study was to explore employed women’s barriers to acquisition of regular mammography. Specifically, women who had one mammogram but did not acquire the second mammogram within ACS guidelines were studied to ascertain which selected barriers they identified. The Health Belief Model developed by Rosenstock (197 4) and expanded by J anz and Becker (1984) was used to guide this study. The Health Belief Model is a psychosocial model that attempts to explain an individual’s decision-making whether to engage or not engage in preventive health behavior. Data from Given, Given, and Dirnitrov’s, (1991) research, Assessment of Barriers and Facilitators to Screeningfor Breast Cancer--a Worksite Approach, MDPH, Chronic Disease Division, was secondarily analyzed. It is hoped that identification of barriers to regular mammography will better equip health care workers and work sites to provide strategies to overcome barriers and increase repeated mammography. The specific question being studied is: Do employed women ages 4:2; 65 who h_ave had one mammogram but failed to acquire subsequent mammograms according to ACS gm'delines identifl cost, lack of physician referral, discomfort, fear of finding cancerjmaccessibility, or lack of knowledge as barriers to mammoggaphy? Review of Literature Conceptual Definition of the Variables The independent variables in this study are selected barriers chosen from the literature. Barrier was defined as the perceived hindrances or obstructions that deter a woman from following through with the suggested screening health behavior, mammography. The barriers selected for study were cost, lack of physician referral, discomfort, fear of finding cancer, inaccessibility, and lack of knowledge of screening guidelines. Cost was defined for this study as the woman’s perception of hardship due to the amount of money involved in obtaining a mammogram. The cost of a mammogram can vary widely from $25 to $250 and for women with low income or no insurance, cost can be a definite hindrance or obstruction. Many researchers (Bastini et al., 1991; Miller & Champion, 1993; MMWR, 1990; Rimer, Keintz, Engstrom, & Rosen, 1989; Stein, Fox, Murata, & Morisky, 1992) define cost as a monetary cost. Sometimes the researchers are referring to the actual dollar figure charged for the mammogram or sometimes they are referring to the respondent’s out of pocket cost. Urban, Anderson, and Peacock, (1994) speak of cost and lack of insurance as factors influencing use of mammography. Also Urban et al. (1994) defined time cost as the total time involved for a woman to obtain a mammogram, including travel, waiting time, and the time required to received services. Glanz et al. (1992) added cost considerations for employed women such as acquiring mammography during work hours with or without pay, whether they had to make up the time, or whether they had to take a sick day. Eley (1989) indicates cost as monetary, cost in work time lost, cost due to additional testing for false positive results, and cost of morbidity and mortality that the screening procedure may increase as in possible radiation exposure. Humphrey and Ballard (1989) identify, in addition to monetary cost, other personal costs such as anxiety over false positive results. Although there can be different facets of cost to a woman, monetary cost was the only consideration in this study. Lack of physician referral was defined for this study as a woman’s perception of her physician’s absence of recommendation for obtaining a mammogram. Lack of physician referral has been documented in many studies (Bastini et al., 1991; Rirner et al., 1991; Stein et al., 1992; Urban et al., 1994) as extremely important in encouraging women to obtain mammography. If a woman’s physician does not recommend a mammogram the woman may feel she does not need one. Authors have spoken of lack of physician referral as lack of advisement (Glanz et al., 1992), a physician not discussing mammography and early detection with the patient (Stein et al., 1992), and lack of physician recommendation (Miller & Champion, 1993). In some studies a physician recommendation is considered a cue to action for the woman, however in all the studies, the lack of a specific recommendation is considered a very strong hindrance and obstruction to mammography. For this study lack of physician referral was defined as the absence of mammography recommendation from the woman’ 5 physician. Discomfort was defined in this study as a woman’s perception of embarrassment and physical and emotional discomfort during the mammographic procedure. Stomper et al. (1988) dedicated an entire research project to discovering if mammography was painful. The study explored the actual physical discomfort involved with the mammographic procedure. The Mammography Attitudes and Usage Study (MMWR, 1990) included an agree-disagree statement “I had a bad experience with my first one” (mammogram). The text does not expand on what the bad experience might have been, the answer is simply the opinion of the respondent. Stein et al. (1992) and Rimer et al. (1989) include embarrassment and fear of pain in their studies. Nettles-Carlson (1989) in discussing the need for breast compression during mammography, indicates mammography is uncomfortable for most women and painful for some others. The breast is a very private and personal part of a woman. Having a stranger visualize and handle one’s breasts could be a very embarrassing and uncomfortable experience. Fear of embarrassment, emotional unpleasantness, and physical pain can be a hindrance to a woman considering a mammogram and for this study constitutes the definition of discomfort. Fear of finding cancer in this study was defined as a woman’s feelings of anxiety in regards to finding breast cancer if she takes the risk of obtaining a screening mammogram. Horton et al. (1992) use the word “fear” when asking about a woman’s concern of finding cancer, Champion (1992) uses the word “worry”, and Gram and Slenker (1992) speak of breast cancer anxiety. An older study by Maclean, Sinfield, Klein, and Hamden, (1984) has a category of fears, worry, and anxiety. The respondents indicated they would worry about what might happen to them if cancer was found, they did not comprehend the concept of screening and as long as they were well they were not going to look for trouble, and a screening mammogram was not merely pointless but positively foolhardy. Anxiety about finding cancer can be a hindrance to women contemplating mammography especially if the woman’s personality leans toward worrying about the unknown. Fear of finding cancer and anxiety concerning breast cancer was considered the definition of fear of finding cancer. Inaccessibility was defined for this study as a woman’s perception of inconvenience and lack of availability in regard to mammography acquisition in her geographic area. Most researchers (Culver & Alexander, 1989; Glanz et al., 1992; Urban et al., 1994;) include access barriers such as inconvenience due to available hours and locations of mammography units especially in relation to work hours. Rimer et al. (1989) speak of access related factors being inconvenience, too much trouble, lack of time or taking too much time. Dodd (1993) feels availability of mammography must be considered in the broad sense. As recently as 1982 at least 70% of practicing radiologists had little or no formal training in the technical and interpretive aspects of mammography. Availability is more than access to an x-ray machine and a radiologist but should include accredited radiologists, certified technicians, and modern certified equipment. Access to mammography can be especially troublesome for employed women whose work schedules conflict with the schedules of mammography units. The geographic area a woman lives in can also be a hindrance when seeking mammography, as some women may need to drive long distances to acquire mammography. For this study inconvenience and lack of availability in acquiring mammography was considered the definition for inaccessibility. Lack of knowledge about mammography screening recommendations in this study was defined as a deficit in a woman’s knowledge about screening recommendations for mammography. Champion (1991) and Miller and Champion (1993) present a conceptual definition of knowledge as cognitive information about breast cancer. Schifeling and Hamblin (1991) found women did not obtain mammography because they did not know they needed one. Nettles-Carlson (1989) indicates some women do not know mammography can identify breast cancer before it is palpable. Rimer et a1. (1989) describes a major barrier in the belief of many women that they do not need mammography if they do not have symptoms. This problem could be categorized as a belief or as misinformation. The Mammography Attitudes and Usage Study GVIMWR, 1990) indicates it is difficult to distinguish if nonattendance is a lack of knowledge or an attitude or belief. Women who have never had a mammogram respond that they do not believe they are at risk as no one in their family has had breast cancer. Lack of knowledge of 10 screening guidelines can be an obstruction to the acquisition of mammography and constitutes the definition of this barrier. Development of Theoretical Model This study used the Health Belief Model as a theoretical framework to describe the relationship between the concepts. The Health Belief Model seeks to understand a widespread failure of people to take advantage of preventive and screening techniques for the early detection of asymptomatic disease (Janz & Becker, 1984) The Health Belief Model (HBM) has four main variables, perceived susceptibility, perceived severity, perceived benefits, and perceived barriers. Perceived susceptibility is an individual’s feeling of vulnerability to a condition, a sense of measuring the risks and the likelihood of actually becoming a victim of the disease in question. Perceived severity is an individual’s perception of the seriousness of contracting an illness plus the dimensions of medical and social consequences. The combination of perceived susceptibility and perceived severity equals the perceived threat of the disease. Perceived benefits are beliefs held by the individual regarding the effectiveness of an action to reduce the threat of disease. A person must feel the benefit is greater than the cost (barriers) to follow through with the behavior. Perceived barriers are seen as the possible hindrances and obstructions relative to following through with the suggested preventive health behavior. Rosenstock (197 4) maintains the level of perceived susceptibility and perceived severity provides the force to act, and the perceived benefits minus the barriers decides the course of action whether to go ahead with preventive 11 health care or not. However, as this model was used in many studies it was felt there was another factor involved. It has been labeled a cue to action or a trigger mechanism that prompts the individual to make a decision to carry out the preventive health behavior. Some cues to action could be mass media campaigns, advice fi'om others, reminder postcard from physician, illness of family member or friend, or newspaper or magazine article. Other considerations affecting the likelihood of carrying out preventive health behavior are demographic, economic, and psychosocial factors. Rosenstock, Strecher, and Becker, (1988) studied the Health Belief Model along with Bandura’s (1986) social cognitive theory and have found the two theories have much in common. After much study and discussion Rosenstock et al. (1988) suggested another component should be added to the Health Belief Model called self efficacy. Self efficacy is a person’s belief in her ability to successfully perform a behavior that will positively influence the outcome. Self efficacy is different from outcome expectation where a person believes a specific behavior will lead to a certain outcome. Self efficacy is the individual’s belief that she can actually carry out the specific behavior. Figure 1 illustrates the Health Belief Model as it relates to breast cancer. This investigator was only concerned with the barriers to mammography but the following discussion will go through the entire model. The arrows indicate how factors in one box can affect the concepts in another box. A woman’s decision to obtain a mammogram is very much influenced by her perceived threat of breast cancer. A woman has a sense of her own susceptibility to breast cancer. Her perceptions are affected by her family 12 history of breast cancer and whether she may already have symptoms of possible breast disease. A woman is also influenced by her feelings of the severity of breast cancer if she were to contract the disease. The demographic factors that may affect the woman’s perceptions of the threat of breast cancer are race, age, income, and educational level. It has been shown repeatedly in studies that higher socioeconomic levels, higher educational level, caucasian race, and younger females are more likely to entertain screening health behaviors, specifically screening mammography (Horton et al., 1992; Miller & Champion, 1993;1VIMWR, 1990). For this study the factors chosen for sample selection were employed females and ages 42-65. This was a secondary analysis of a previous study which included only employed females, and the ages 42-65 were selected to identify those women who might not be in compliance with ACS screening guidelines. The psychosocial factors are marital status and employment status. Some psychosocial factors have been documented in the literature as being positive in encouraging mammography. Women who were married or had a significant relationship were observed to be more likely to have adhered to mammography guidelines (Bastini et al., 1991; Glanz et al., 1992). When considering employed women, social support from co-workers and employers has also been a positive factor for obtaining mammography (Culver & Alexander, 1989; Glanz et al., 1992). A cue to action usually precipitates the actual decision-making process of whether or not a woman will obtain a mammogram. The cues could be Demographic Variables Age42-65, Income, Race, Education, Female 13 V l Perceived Susceptibility to Breast Cancer Perceived Seriousness of Breast Cancer v Perceived benefits of Mammography and Self Efficacy Minus PERCEIVED BARRIERS TO MAMMOGRAPHY COST, LACK OF PHYSICIAN REFERRAL, DISCOMFORT, FEAR, OF FINDING CANCER, INACCESSIBILITY, and LACK OF KNOWLEDGE OF SCREENING GUIDELINES Perceived Threat of Breast Cancer Cues to Action ACS brochures Mammography information , Mammography recommendations l Likelihood of '—' obtaining a SUB SEQUENT MAMMOGRAM Figure 1 Health Belief Model and Regular Mammography Acquisition Adapted from J anz & Becker. Health Education Quarterly, 1 1, 1984. 14 external such as a mass media campaign, a reminder note from a health care provider, or the cues could be internal such as a questionable symptom. The decision to obtain a mammogram is made from the measure of benefits minus the barriers. A woman’s decision to acquire or not acquire a mammogram depends on the weights of those barriers and benefits. If the perceived benefits (assuming there are perceived benefits) outweigh the barriers the woman will seek mammography. If the barriers outweigh the benefits and self efficacy the result will be a decision to not obtain a mammogram at this time. This investigator focused on the barriers of cost, lack of physician referral, discomfort, fear of finding cancer, inaccessibility, and lack of knowledge. The investigator sought to find if these barriers are identified by women who have not gotten their mammograms at the recommended interval. Review and Sypthesis of Literature Within the Context of This Study Cost has been documented in numerous studies as a barrier to mammography. Researchers (Bastini et al., 1991; Harnwi, 1990; Horton et al., 1992) document cost as a significant barrier to obtaining mammography. Approximately 28%-46% of women indicated cost would prevent them from acquiring mammography. There is disagreement from other researchers (MDPH, 1990b; Urban et al., 1994) who have not found cost to be a significant barrier. These latter researchers reported cost or lack of insurance was not a significant barrier to mammography. Urban et al. (1994) conducted a telephone survey of 1520 women age 50-75 in four Washington state communities. The researchers looked at out- of-pocket cost for mammography, cost in time, inconvenience, and household 15 income. They created a variable indicating whether a woman’s health insurance covered 50% or more of the price of the mammogram. This variable and the interactions between it and those variables measuring time cost, inconvenience, and income were added to test the hypothesis that the importance of economic variables may be greater among women with poor insurance coverage. These interactions were not statistically significant, suggesting that the effects of time cost, inconvenience and income on mammography use do not vary with insurance coverage. The researchers submit the analysis provides no evidence that economic variables are more important for low income or uninsured women. They do concede the effects of economic variables on use of mammography were found to be important. It is difficult to understand the researchers analytical process when their data indicate 25% of women age 50-64 with no insurance had never had a mammogram and only 39% were within guidelines. Also over one-half of the women who didn’t know if their insurance would cover mammography had never had a mammogram. Yet the researchers find that improved insurance coverage would not affect mammography acquisition Cost has been considered a major barrier to mammography. However in this study the women were employed and insured. Few studies have investigated this type of sample to see if cost is still identified as a banier. Also is cost an issue for women who are not adhering to screening guidelines even if they are insured? Some people are very concerned about accruing unneeded costs to their insurance company. There seems to be total agreement in the literature regarding the need for physician recommendation. Lack of physician referral is probably the 16 greatest barrier to mammogram acquisition (Bastini et al., 1991; Dodd, 1993; Stein et al., 1992; Urban et al., 1994). These researchers report mammogram acquisition and intention of women are directly related to exposure to physicians and physician referral. Researchers (Glanz et al., 1992) indicate employed women whose doctors had advised them to have a mammogram had higher screening rates than women reporting no such recommendation. Adherence to screening guidelines seems to depend on the advisement of a physician also (Glanz et al., 1992; Horton et al., 1992). Many women are reluctant to suggest a mammogram if their physician does not mention it (MMWR, 1990). Lack of physician referral seems to be the greatest barrier to mammography. Nearly every researcher emphasized the importance of physician referral. Women who are white, well educated, and middle class are known to be more likely to seek screening procedures. This means they are more likely to have been in contact with health care providers. The women in this study fit this prototype and have already had one mammogram. The employed women in this study still need to be evaluated to see if they identify lack of physician referral as a barrier to mammography adherence. Nettles-Carlson (1998) and Stein et al. (1992) cite discomfort, pain, and embarrassment as a deterrent to mammography and give recommendations to remedy the situation. Gram and Slenker (1992) reported 11% of over 3000 women in a Norwegian study found the screening examination somewhat painful. Horton et al. (1992) in a mammography attitudes and usage study of 980 Pennsylvania women contacted by random digit dialing, found 20% of women who have never had a mammogram were concerned about l7 embarrassment. No statistics for embarrassment were given for women who had a mammogram but were not in compliance with screening guidelines although they addressed other barriers with adherence. Perhaps there were no significant statistics or perhaps the researchers thought once a woman had obtained an initial mammogram she had overcome any embarrassment that would deter subsequent mammograms. The researchers did not address pain or discomfort in their study. Stamper et al. (1988) found 49% of 1847 women surveyed immediately after the mammography test experienced no discomfort, 39% experienced mild discomfort, and the rest, 12%, experienced moderate to severe discomfort. No women recorded that their discomfort was severe enough to make them reconsider ever getting another mammogram. Rimer et al. (1989) reported pain and embarrassment were nonsigrrificant variables which did not permit discrimination between compliers and noncompliers of mammography acquisition. No studies concerning employed women were found to include discomfort in their list of barriers and virtually no studies commented on compliance to screening guidelines and discomfort. There is disagreement in the literature as to whether discomfort and embarrassment are a barrier to mammography. This current study of women who have already had one mammogram may shed light on whether discomfort is a barrier only to first time mammography acquisition or if it is still a deterrent for women who have already experienced a mammogram. Fear of finding cancer continues to be a barrier for some women (Champion, 1992; Horton et al., 1992). Champion (1992) is the only study 18 that addressed compliance to guidelines in relation to fear of finding cancer. She surveyed 322 women age 35 and older in a midwestem metropolitan area. The researcher grouped cost, pain, time, embarrassment, and worry into a barrier category. The barrier group was significant when addressing intent to complete an initial mammography. However the barrier group was not significantly related to compliance with mammography guidelines. Horton et al. (1992) reported in a study of 980 women age 40 and older that 11%-18% of women fear the procedure or fear that a mammogram will find cancer. Gram and Slenker (1992) report one out of three women had anxiety about breast cancer, however receiving normal results on a screening mammogram decreased the prevalence of anxiety. In an older study of women who declined breast screening (Maclean et al., 1984) researchers reported almost 40% of 125 women voiced deep fears and concerns about possible breast cancer. Twenty percent of the women were explicit about feeling that one ought not to tempt fate and one should leave well enough alone. In contrast Bastini et al. (1991) reported 68% of their sample indicated that chances were very low that fear of finding cancer would prevent them from getting a mammogram. However, the researchers did report fear of finding cancer was associated with screening behavior and could function as a barrier against being screened for those few women who indicated a problem. No studies were found specifically addressing employed women and fear of finding cancer. Probably many of the preceding studies included employed women but employment was not a factor that was studied. Anxiety and fear of finding cancer have been identified in several studies (Horton et al., 1992; Maclean et al., 1984; Gram & Slenker, 1992). 19 The only study that addressed compliance to guidelines and fear of finding cancer is Champion (1992) who found worry was not related to mammography compliance. This result is different from other studies. It needs to be addressed again with another sample such as the subjects in this current study. Inaccessibility seems to be more of a problem for working and rural women but also continues to be a problem for women whose employment status is not known as documented by Gram and Slenker (1992) and Culver and Alexander (1989). Horton et al. (1992) reported 23% of 980 women indicated it was hard to find time to get a mammogram. Rimer et al. (1989) in a study of why 484 women resisted screening mammography, report access as a significant barrier to mammography and a predictor of compliance. A statistically significant number of respondents who had not acquired mammography indicated that mammography was too much trouble and inconvenient, and that they didn’t have enough time to acquire mammography. Glanz et al. (1992) interviewed 798 employed women from Pennsylvania and New Jersey age 40 and older. Eighty-four percent reported having had a mammogram and 72% were within screening guidelines. Access factors were significant among women who had ever had a mammogram but not among adhering women. Researchers found women more likely to get a mammogram if they could obtain one during work hours either at the worksite or by going to a mammography center. In a subgroup of 17 9 women, 54% stated they obtained a mammogram during work hours, two-thirds of them with pay. Some of these women also had access to a 20 mobile screening unit at their worksite and 58% reported driving no more than five miles to get a mammogram. For the women in this subsarnple it would appear that access is not a great barrier however, 28% reported it was difficult to schedule a mammogram around their work schedule. No comments were found about adherence to screening guidelines and access. Access to screening mammography can be a problem for working women. Especially if mammography units are only available week days and at times that coincide with women’s work hours. There is disagreement in the literature as to whether access is a barrier. Few studies have looked solely at employed women and no studies were found that addressed adherence to screening guidelines and inaccessibility to mammography. Numerous studies agree that lack of knowledge of screening guidelines is a barrier to mammography (Bastini et al., 1991; Glanz et al., 1992; Horton et al., 1992). The researchers report women are more likely to have mammography if they are aware of the screening guidelines. Miller and Champion (1993) disagree in their report stating that knowledge was not associated with utilization of mammography. The researchers had a convenience sample of 161 women age 50 and older from four churches in a large rnidwestem metropolitan area. Eighty-one percent had had a mammogram, 39% had had a mammogram in the preceding year, and 24% were compliant for three years. A seven item knowledge inventory was used to assess breast cancer risk factors and mammography recommendations. Internal consistency reliability for the sample data was only 0.37 . The researchers submit this indicates that knowledge in relation to the various items in the inventory varied considerably for individuals. Perhaps the low 21 alpha value of the knowledge inventory suggests a scale with poor reliability and thus knowledge was not associated with utilization of mammography. Bastini et al. (1991) and Champion (1991) found that women who knew the screening mammography guidelines for their age were more likely to have been screened according to the guidelines. There is disagreement in the literature as to whether lack of knowledge of screening guidelines is a barrier to mammography. One study (Glanz et al., 1992) found lack of knowledge to be a barrier to employed women and is the only study that addressed working women. Another employed sample needs to be evaluated to see if they identify lack of knowledge of screening guidelines as a barrier to mammography. Women who have had a mammogram need to be investigated also to see if lack of knowledge can still be a barrier to adherence to screening guidelines. The barriers chosen for this study have been cited often in the literature especially for first time mammography. What is not clear is whether adherence to screening guidelines is affected by the same barriers. There are few studies available concerning compliance to screening mammography and also few studies involving employed women. This study has value in indicating what barriers are identified so some of those issues can be addressed. Also this study has value if certain barriers are not identified so there can be some insight on which areas to focus attention. The ultimate goal was to encourage regular mammography and break down existing barriers. If we can identify the barriers we have a place to start. Since breast cancer affects a large number of women, it definitely merits more study to identify ways to decrease its morbidity and mortality. 22 Methodological and Conceptual Problems in the Literature There are some methodological problems in the literature, one of which is self reporting 03asfini et al., 1991; Horton et al., 1992; Stein et al., 1992). Self reported data can lead to questions about validity and accuracy of its content, especially if the subject matter is very personal or a respondent’s views are contrary to popular public opinion at the time. Researchers have to trust the respondent to report true feelings, and not the “acceptable” response. Another problem is the retrospective nature of many studies. Retrospective studies rely on questionnaires either written or verbal which require a woman to remember when she had a mammogram (Bastini et al., 1991; Champion, 1991; Horton et al., 1992; Rimer et al., 1989; Stein et al., 1992; Urban et al., 1994). This memory or recall problem can greatly affect the data. Also depending on the mood of the respondent or current life events, her response regarding attitude variables could change from day to day. Self selection or convenience sampling is another problem related to many studies (Bastini et al., 1991; Glanz et al., 1992; Horton et al., 1992; Stein et al., 1992). Most of these studies used a random digit dialed telephone interview and the subjects could decline if they did not want to participate. Field studies about attitudes and behavior are not strictly controlled studies. All the information comes from the respondent and if a woman doesn’t want to participate she doesn’t have to. The available subjects may be atypical of the population in regards to the variables being measured. Women who are not interested in mammography, or are very afraid of mammograms may decline to participate, leaving a piece of the total 23 population out of the picture. Conversely women who are very interested in preventive health and mammography are probably more likely to volunteer to be a part of a study. One has to wonder about the women who choose not to participate in studies. What are their feelings about mammography and what would they indicate about possible barriers? Sample bias is another methodological problem that occurs when one is not able to get a true sampling of subjects representing the total population. The goal is to get a sample that represents the total population in regards to race, education, socioeconomic status, age, etc. Bastini et al. (1991) reports an under representation of Hispanics in Los Angeles County, California in their study of screening mammography and barriers to use. Champion (1991) required subjects to have an eighth grade reading capacity in her study. Although researchers make choices on how best to conduct studies, this particular study excluded illiterate and less educated women entirely. Also if the studies that used telephone interviews were conducted during day time hours, many working women could have been excluded. Bastini et al. (1991) also wams about predicting mammographic behavior from knowledge and attitudinal variables. The researchers used a 23 item questionnaire to measure demographic characteristics and mammography knowledge, attitudes, intentions, and behaviors. They also used the HBM for a theoretical model which postulates an individual’s perceptions of severity, susceptibility, efficacy, and barriers will predict whether a health behavior will occur. The researchers submit it is not entirely clear whether attitudes influence obtaining a mammogram or whether receiving a mammogram influences one’s attitudes. This is an example of ex 24 post facto research. There is a problem of inferring causal relationships after the fact, because there was no manipulative control of the independent variables. None of these methodological problems can be completely deleted, however the researcher needs to be aware of them. It is not possible to study the entire population but researchers need to look at their methods to make sure they do not exclude important sectors of the population. Also researchers should be very careful abut making cause and effect claims conceming the research and simply report the facts. The literature relevant to barriers to screening mammography has been reviewed to gain understanding as to why women are not getting mammograms on a regular basis. The selected barriers, cost, lack of physician referral, discomfort, fear of finding cancer, inaccessibility, and lack of knowledge, for this study were well documented for first time mammography. What is not clear is whether adherence to screening guidelines is affected by the same barriers. There are few studies (Glanz et al., 1992) that address barriers to adherence to screening mammography guidelines among employed women. Very little has been written about working women and any special needs they may have concerning regular mammography. Employed women represent a large segment of the female population of the US. One of nine women will experience breast cancer in her lifetime. The morbidity and mortality of breast cancer can have a significant impact upon the worksite through lost work hours, training replacement employees, and disability and medical insurance premiums. 25 There are also too few studies concerning adherence to screening guidelines. Researchers have done well identifying barriers to initial mammography. It is time to move on and study compliance issues in regards to regular screening mammography. More groups of women need to be investigated to get a more complete picture of the problems plaguing women that lead to noncompliance with screening guidelines. Methods Rosea rch desigp The research design was a descriptive secondary analysis of data from Michigan State University research named Assessment of Baniers and Facilitators to Screening for Breast Cancer--A Worksite Approach (Given et al., 1991).The research question was: Do employed women ages 42-65 who have h_ad one mgrpmpgram but failed to acquire subsequent mammograms according to ACS guidelines identify cost. lack of physician referral. discomfort. fear of findingcancer, inaccessibility, or lack of knowledgeirs men to mammogram Mel: Sociodemographically the subjects from the original study were employed females ages 35-65. They were predominately middle class, educated, caucasian women. There were a few African-American and Hispanic subjects included. The overall income levels ranged from $15,000 to greater than $50,000, and education levels ranged from less than high school diploma through graduate school. There were 17 9 respondents of the 1666 voluntary subjects returning questionnaires from six different worksites who met the criteria for this study. 26 The criteria for sample selection were: (a) employed women working in the Greater Lansing area, (b) ages 42-65, (c) gave a response of “yes” to having had a mammogram, and ((1) recorded a date of her most recent mammogram beyond the time limits recommended for her age by the ACS guidelines. Data Collection Since this is a secondary study, data collection was retrieved from a computer disc that had responses from the questionnaire in a coded numerical form. The data was originally collected from an 18 page questionnaire that was distributed to women of six different worksites in 1990 in the Greater Lansing area, either by mailing labels acquired from the company or directly at an informational meeting. The respondents mailed the questionnaire back to Michigan State University in a stamped self-addressed return envelope. Operational Definition of Variables and Scoring The independent variables: cost, lack of physician referral, discomfort, fear of finding cancer, inconvenience, inaccessibility, and lack of knowledge concerning screening mammography recommendations, were operationalized by each subject’s personal response to the questionnaire, Health Practices: A Worksite Survey (Given et al., 1991). The operational definition of each variable is as follows. Cost was defined by one item, response 33 card 3, asking if obtaining a mammogram is a cost hardship. The Likert type question has four possible answers ranging from 1 (stroneg disaggee) to 4 (strongly agzee). A high score represents the perception of monetary hardship and a barrier to mammography. 27 Lack of physician referral was defined by a combination of two items. One of the two items which is in a Likert four point format was recoded to a dichotomous format, the other item is a dichotomous variable using a “yes” and “no” format. Response 52 card 3 is a response to a negative statement “my doctor has never suggested that I have a mammo gram”. The question explores a woman’ s perception of her doctor’ s recommendation for obtaining a mammogram. The question is in Likert format with four possible answers which are scored ranging from 1 (stongly disagree) to 4 (stroneg aggee) and was recoded into a dichotomous variable. An answer of “agree” or “strongly agree” was scored a “no” inferring a barrier, an answer of “disagree” or ‘strongly disagree” was scored as yes indicating a lack of perceived barrier. Response 58 card 5 answers to the question of “has your doctor advised you to obtain a screening mammography?”. This dichotomous question has two possible responses and was scored as “no’ and “yes”. The two dichotomous questions were grouped together and the subjects’ responses to both questions have to constitute a barrier for lack of physician referral to be considered a barrier. Discomfort was defined by four items which in combination formed a discomfort scale. The items included response 31 card 3 to the statement “a mammogram is an embarrassing procedure”, response 32 card 3 dealing with a mammogram being an unpleasant procedure in the participant’s perception, response 34 card 3 addressing whether the participant feels a mammogram is painful or physically uncomfortable, and response 41 card 3 addressing whether a mammogram makes the participant feel uncomfortable. The above four Likert type questions have four possible responses ranging from 1 (strongly disagree) to 4 (strongly agree). A high discomfort total scale score indicated a perception of embarrassment and physical and emotional discomfort and also a barrier to mammography. The possible range of the total scale score was 4 to 16. Fear of finding cancer was defined by a combination of two items forming an anxiety scale. Response 35 card 3 addressed the statement “a mammogram would make me feel anxious”, and response 44 card 3 states “I’m afraid something abnormal would be found”. The above two questions in four point Likert format have four possible responses ranging fi'om 1 (strongly disagree) to 4 (strongly agree). A high anxiety total scale score represented a perception of fear and anxiety and a barrier to mammography. The possible range was 2 to 8 for total scale score. Inaccessibility was defined by three items which in combination will form an access scale. Responses 36 and 40 card 3 deal with a mammogram being inconvenient to arrange and not worth the effort. Response 38 card 3 addresses whether a mammogram is available in the participant’s area. The four point Likert type questions have four possible responses from 1 (sggrgly gsggrep) to 4 (strong1y agree). A high access total scale score indicated a perception of inconvenience and lack of availability and also a barrier to mammography. The possible range of the total scale score was 3 to 12. Lack of knowledge about mammography screening recommendations was defined by two items which in combination formed a knowledge scale. Responses 42 and 48 card 3 addressed whether the participant knows when she should obtain a mammogram. These two questions in four point Likert format have four possible responses 1 (strongly disagree) to 4 (strongly 29 am). A high knowledge total scale score indicated a lack of knowledge concerning mammography screening guidelines and also a barrier to mammography. A possible range for the total scale score was 2 to 8. Instrumentation The instrument was the 18 questionnaire from Wave I (See Appendix A) of the Michigan State study “Assessment of Barriers and Facilitators to Screening for Breast Cancer:--a Worksite Approach” (Given et al., 1991). The original wave I instrument was checked for reliability by Cronbach’s alpha and yielded coefficients of 0.78 to 0.91 for the summated barrier scales. Fourteen questions were extracted from the original questionnaire for this current study. The questions included one on cost, two on lack of physician referral, four on discomfort, two on fear of finding cancer, three on inaccessibility, and two on lack of knowledge about screening mammography recommendation. The discomfort, anxiety, access, and lack of knowledge scales were tested for reliability by Cronbach’s coefficient alpha before going on with the data analysis and yielded coefficients of 0.56 to 0.79. Cronbach’s coefficient alpha correlates each individual item with each other item and the total score. It can also help the researcher identify individual problem questions that do not relate well to other questions in the scale. Data Analysis Data analysis was done with the SPSS/PC+ computer program. Demographic characteristics of age, marital status, race, educational level, and household income were described with descriptive statistics using frequencies, percents, means, and standard deviations as appropriate. 30 The first barrier, cost, was reported in a frequency distribution, mean, and standard deviation. The frequency and percent indicated how many women identify cost as a barrier and how many do not. The mean and standard deviation describe the average woman’s perception and the index of variability. If the total mean score was greater than the midpoint of the range, cost was considered a banier. The lack of physician referral barrier was reported in a frequency distribution and percent. The frequency and percent indicate how many women identified lack of physician referral as a barrier and how many did not. This barrier was measured by nominal data which can be analyzed appropriately by frequency and percent. Also since the data were proportional and categorical, chi-square statistics were used to test the statistical significance of the proportion of women who answered yes as opposed to the proportion of women who answered no. Chi-square was considered significant if greater then 3.84 with 1 degree of freedom. A barrier was found if the highest frequency was a “no” response. The last four barriers had similar analysis since they each have subscales. Discomfort had a four item discomfort scale. Fear of finding cancer had a two item anxiety scale. The banier, inaccessibility, had a three item access scale, and the barrier of lack of knowledge of screening guidelines was analyzed by a two item knowledge scale. The total scale scores were then described by mean and standard deviation. Ifthe total scale mean was greater than the midpoint of the total scale the results were considered a barrier. The standard deviation of the scale was used to discuss the variability within the sample group. 31 Each single item of all the scales was also described by a frequency distribution and percent, allowmg identification of how many women perceived a barrier and how many did not. These statistical techniques are appropriate for use with ordinal data. Limitations and Assumptions There is a limitation when using secondary data of trying to create new scales from items not grouped together in the original project conceptualization. Another limitation is that the data was self reported and no attempt was made to validate the information through other sources. A third limitation is the subjects were self selected so the results may not represent the larger population. Assumptions concerning the data are that the respondents answered the questions honestly, and since secondary data is being used an assumption is made that the data was entered in the computer accurately. Protection of Human Subjects The University Committee on Research Involving Human Subjects (UCRIHS) at Michigan State University was contacted for approval concerning protection of the rights and welfare of the respondents. Approval for this project was issued March 24, 1995 (See Appendix B) before data analysis began. A copy of the approval from UCRIHS for the original Wave I study is also included in Appendix B. The identity of study respondents and their responses remained anonymous as there were no names in the data. 32 Findings and Interpretation This study investigated employed women ages 42-65 who have had one mammogram but have not obtained a subsequent mammogram within the recommendations of the ACS. The subjects’ responses to questions pertaining to selected barriers, cost, lack of physician referral, discomfort, fear of finding cancer, inaccessibility, and lack of knowledge of screening guidelines were evaluated to see if this group of women identified these barriers. Secondary data was used from a MSU study, Assessment of Barriers and Facilitators to Screening for Breast Cancer-~A Worksite Approach (Given et al., 1991). Sociodemographic Characteristics The sample consisted of 17 9 respondents who met the criteria of age 42-65, employed, had a mammogram, and were currently noncompliant with ACS guidelines for a subsequent mammogram. The subjects had a mean age of 52 years (§2=5.75) and ranged fiorn 42 to 65 years of age. The majority of subjects were married (p=125, 69.8%), white (p=165, 92.2%), educated past high school diploma (p=107, 59.8%), and reported an annual household income greater than $35,000 (r_1=119, 69.3%). See Table 1 for more detailed characteristics of the sample. 33 Table l Sociodemographic characteristics of noncompliant women (n=179) Lariable Frequency Percentagp Age 42-49 67 37.0 50-59 92 52.0 60-65 20 11.0 Marital status single/never married 7 3 .9 widowed 3 1.7 married/living as married 125 69.8 divorced 43 24.0 other 1 0.6 Race white 165 92.2 black 11 6.1 hispanic 1 0.6 arnerican indian/alaskan 1 0.6 chinese 1 0.6 Education less than 8th grade 1 0.6 8'h-11th grade 7 3.9 high school/ged 64 35.8 post high school/tech 15 8.4 1-3 years college 47 26.3 college graduate 19 10.6 graduate school 26 14.5 Table l (cont’d) firiable Frequency Percerggg Income less than $15,999 2 1.2 $15,000-20,999 8 4.7 $21,000-25,999 13 7 .6 $26,000-30,999 l4 8. 1 $31 ,000-35,999 16 9.3 $36,000-40,999 24 14.0 $41 ,000-45,999 23 13 .4 $46,000-50,000 16 9.3 greater than $50,000 56 32.6 missing 7 W The research question was Do employed women ages 42-65 who ha_v_e_ had one mammogzam but failed to acquire subsequent mammogzams according to ACS guidelines identify cost. lack of physician referrfial, discomfort. fear of finding cancer. inaficcessibility. or lack of lgrowlem barriers to mammogzaphy. Valid percents were used in this study to describe the subjects who responded to the question. Subjects who did not respond to the specific question were excluded from the percentage figures. The first barrier examined was cost and 89.4% subjects (p=151) disagreed or strongly disagreed that mammogram cost was a hardship for them. The low mean M4 .7) indicated the average response disagreed that cost was a hardship and the narrow standard deviation (S_D=0.78) indicated there is very little variability among the sample for this barrier. Only eighteen 35 Table 2 quency and pgrcent of cost hardship barrier related to mammography (n=179) Frequency Percent Strongly agree 8 4.7 Agree 10 5.9 Disagree 75 44.4 Strongly disagree 76 45.0 Missing 10 women or 10.6% indicated that cost was a barrier (See Table 2). Analysis of the data reveals cost was not a barrier for this sample. All of the subjects in the sample were employed and were insured. Ten per cent of the women agreed that cost was still a problem. When asked about their insurance coverage 59.5% (p=103) thought their insurance covered mammography, 18.5% (p=32) reported it was not covered, and 22.0% (p=3 8) did not know if their insurance covered mammography. This would indicate that even though some women didn’t know if their insurance covered mammography and others knew mammography was not covered, cost still was not perceived to be a problem. Only 10 (5.9%) women had an income level less than $20,000. Family size was not included in the survey. 36 Ten subjects (5.6%) did not answer this question but even if they agreed with the question it would not have changed the outcome significantly. Another consideration about cost and this particular sample is the majority of these women were considerably above the poverty level. The annual household income for 78.6% (p=l 19) of the subjects was greater than $35,000, indicating most respondents could likely pay for a mammogram easier than a poor or uninsured woman. The literature continues to support cost as a barrier for lower income, uninsured women (Horton et al., 1994). However, there were few low income women and no uninsured women in this sample. Thus, cost was not a barrier for this sample. The barrier, lack of physician referral, was explored with a combination of two questions. One question was in Likert form and recoded to a yes and no answer and then the two nominal questions were grouped together for statistical analysis utilizing chi square. One hundred forty-six women (98.6%) answered yes to both questions indicating their physician had advised mammography, and they disagreed with the statement “my doctor has never suggested mammography”. Two respondents (1.4%) answered “no”, indicating their physician had not advised mammography and agreed “my doctor has never suggested mammography. Seven subjects, excluded from the analysis, gave conflicting answers to the two questions possibly due to the negative statement There were 24 (13.4%) missing observations perhaps the negative statement was confusing but no matter what their answers the outcome of this barrier would not be significantly changed. Of the 148 females whose answers to both questions are consistent there was a significant difference in proportion of their responses. The chi-square value 37 was 148, d_f =1, and a significance of 0.00. The chi-square value also indicates the subjects did not randomly fall into a group as a result of chance, but the preponderance of women agree that lack of physician referral was not a barrier for this sample. There is currently disagreement as to mammography guidelines among various cancer specialty groups. Some feel mammography screening of women in their 40’s is not cost effective and has not decreased mortality rates for women this age. Consequently there can be confusion for physicians and clients as to what guidelines to follow. It is not known how this controversy may have impacted this study but it may have been a limitation. The literature disagrees with this finding and suggests lack of physician referral is the greatest barrier to acquisition of mammography (Bastini et al., 1991; Dodd, 1993; Urban et al., 1994). The two questions used in this survey are better suited for investigating women who have never had a mammogram. It is possible the subject’s physician may have suggested a mammogram at least once, but not on a regular basis. A different question indicating the physician suggested mammography on a regular basis may have yielded an answer consistent with the literature. So it is difficult to determine if these women are different from those in the literature or if the questions did not adequately evaluate physician recommendation for adherence to screening guidelines. The literature (Horton et al., 1991) also suggests that well educated, higher income, and younger women are more likely to obtain mammography and preventive health care. Many of the subjects in the sample fit this description and may have disagreed with other studies about lack of referral 38 due to their higher socioeconomic status and possibly more frequent contact with health care services. For this sample, lack of physician referral was not a barrier. The third barrier investigated was that of discomfort with four questions (see Table 3). The question indicating a mammogram makes me feel uncomfortable revealed 64 women (37.5%) agreed or strongly agreed and 107 women (62.5%) disagreed or strongly disagreed. The question concerning mammography being an unpleasant procedure was agreed or strongly agreed with by 83 (48.8%) of the subjects, and 87 (51.2%) disagreed or strongly disagreed with the statement. Concerning the statement a mammogram is an embarrassing procedure, 41 women (23.9%) agreed or strongly agreed and 130 women (76.0%) who disagreed or strongly disagreed with the statement. The subjects responded to the question about mammography being painful with 60 (35.5%) indicating agreement and 109 (64.5%) indicating disagreement. Overall the women did not report discomfort as a barrier. There were 8-10 (4.5%-5.6%) missing observations per question. It is unknown why the subjects did not answer the questions. It is possible the nine women who did not answer the question about unpleasantrress could completely change the outcome and lead to a barrier outcome if they all agreed with the statement. However it is not likely they would have all agreed. The four preceding questions were grouped together in a discomfort scale which appropriately addressed discomfort and comprises a valid scale. Cronbach’s alpha reliability test was used to evaluate internal consistency. The alpha coefficient was 0.79 indicating a reliable scale. A scale is 39 Table 3 Frguency and Erecnt of discomfort items related to mammography (n=l79) Uncomfortable Unpleasant Embarrassing Painful n % n % n % n % Strongly agree 9 5.3 17 10.0 4 2.3 17 10.1 Agree 55 32.2 66 38.8 37 21.6 43 25.4 Disagree 63 36.8 60 35.3 79 46.2 84 49.7 Stronglydisagree 44 25.7 27 15.9 51 29.8 25 14.8 Missing 8 9 8 10 considered to be reliable if the coefficient is 0.70 or greater. The possible range of the total scale score was 4 to 16, a total scale mean greater than 10 indicated a barrier. The total scale mean was 8.87 (S_D 2.66) indicating the average respondent disagreed that discomfort was a barrier. However, the standard deviation indicates there was a fair amount of variability among the subjects extending into the category of agree. An evaluation of the individual questions revealed 83 subjects (48.8%) responded mammography was an unpleasant procedure and 37.5% (p=64) agreed mammography made them feel uncomfortable. Similarly 35.5% (p=60) agreed mammography was painful. It must be remembered these respondents have already had one mammogram, these are not preconceived ideas before an initial mammogram. 40 The responses given are from a personal experience with mammography and should be taken seriously as the respondents’ perception of the procedure. There is disagreement in the literature as to discomfort being a barrier. Some researchers have found no evidence of discomfort being a barrier (Rimer et al., 1989) other investigators (Gram & Slenker, 1992; Horton et al., 1992) still identify discomfort as a barrier. The results of this study could indicate discomfort can be a barrier for 35%-48% of women who have already experienced a mammogram, but most women do not identify discomfort as a barrier. Another barrier, fear of finding cancer, was explored with a two item scale (See Table 4). The questions dealt with a mammogram making me anxious, and being afraid something abnormal would be found. The questions address the barrier appropriately and form a valid scale. One hundred twenty-six subjects (75.9%) disagreed or strongly disagreed with the anxiety statement, 40 women (24.1%) agreed or strongly agreed with the statement. The “fear of finding something abnormal” statement yielded 139 (81.2%) disagree or stingily disagree responses and 32 (18.7%) agree or strongly agree responses. There were 8-13 missing observations perhaps they didn’t feel the question applied to them, it is not likely their answers would have changed the outcome of the barrier. The anxiety scale was formed by grouping the two previous questions together and Cronbach’s alpha was used to test reliability. The alpha coefficient (0.56) was lower on this scale, and the reliability of this scale should be interpreted with caution. The low reliability could be due to the content of the questions or because it is only a two item scale, for longer 41 scales are more reliable than short scales. The possible range of the total scale score was 2 to 8, a total scale mean greater than 5 indicated a barrier. The total scale mean 3.86 indicated most subjects disagreed with the anxiety scale as being a barrier to mammography. There is moderate variability (S_D=1.30) among respondents but still the majority fall within the category of disagree. So for this sample, anxiety and fear of finding cancer was not a barrier. Table 4 Frguency and percent of anxiety items related to mammography (n=l79 Makes me anxious Afraid abnormal findings n % n % Strongly agree 3 1.8 6 3.5 Agree 37 22.3 26 15.2 Disagree 83 50.0 76 44.4 Strongly disagree 43 25.9 63 36.8 Missing 13 8 Researchers Horton et al., (1992) and Gram and Slenker, (1992) cite fear of finding cancer as a barrier to mammography. However the barrier 42 seems to be more related to the first mammogram and Champion (1992) reports anxiety is not significantly related to compliance with ACS guidelines. The respondents in this sample have all had a mammogram and the majority disagree that anxiety and fear of finding cancer are a barrier to regular mammography. The barrier of inaccessibility (Table 5) included three questions. The first statement explored if a mammogram was inconvenient to arrange. One hundred thirty-nine women (81.7%) disagreed or strongly disagreed and 31 women (18.2%) agreed or strongly agreed. A second statement addressed if a mammogram was not available in her area. One hundred sixty-two subjects disagreed or strongly disagreed (95.9%), and only seven subjects (4.2%) agreed or strongly agreed with this statement. A third statement stated a mammogram is not worth the effort. One hundred sixty-three subjects (95.3%) responded with disagreement or strong disagreement, and only eight or 4.6% of women agreed or strongly agreed. The questions address the barrier appropriately and form a valid scale. There were 8-10 missing observations, maybe a few women skipped the page all of these questions were on in the survey as it seems to be nearly the same number for each question. It is not likely the missing respondents would have significantly changed the outcome of this barrier. These three questions were grouped together to form an inaccessibility scale and Cronbach’s alpha was used to test for reliability. The alpha coefficient was .68, total scale mean 4.69, and standard deviation 1.65. scale was considered reliable as it was a short scale. The possible total scale range was 3 to 12 and a total scale mean greater than 7.5 indicated a barrier. 43 Table 5 Freguency and percent of inaccessibility items related to mammography (n=l79) Inconvenient Not available Not worth effort n % n % n % Strongly agree 6 3.5 4 2.4 4 2.3 Agree 25 14.7 3 1.8 4 2.3 Disagree 81 47.6 49 29.0 53 31.0 Strongly disagree 58 34.1 113 66.9 110 64.3 Missing 9 10 8 The total scale mean M=4.69) indicated most of the respondents felt that mammography is definitely available and worth the effort. The standard deviation (S_D—11.65) indicated there was moderate variability among the respondents. For the women in this sample accessibility was not a barrier. The literature (Gram & Slenker, 1992; Horton etal., 1992) indicates accessibility continues to be a problem for employed women and rural women. The women in the sample were employed but probably not rural as they worked in the Greater Lansing area. The fact of being employed could contribute to the 18% response of mammography being inconvenient to arrange due to work schedules and mammography unit availability during nonwork hours. The last barrier, lack of knowledge, included two questions (See Table 6). The first question stated “I don’t know when I need a mammogram”. One hundred forty-six (86.9%) women disagreed or strongly disagreed and 22 (13.1%) agreed or strongly agreed with the statement. The second statement said “I forget when I’m supposed to have a mammogram”. This statement was disagreed or strongly disagreed with by 131 (77.5%) of the subjects, 38 (22.5%) of the women agreed or strongly agreed. There were 11 and 10 missing observations for these questions and even if those subjects agreed with the questions, the outcome of the barrier would not be significantly changed. The preceding two questions were grouped together to form a scale and tested for reliability with Cronbach’s alpha. The alpha coefficient was .63 and the scale should be interpreted with some caution. The low alpha level could be due to question content or the fact of only having two items. The possible total scale range was 2 to 8 and a total scale mean of greater than 5 indicated a barrier. The standard deviation (S_D=1.29) indicated there was not alot of variability among the responses. The total scale mean (M=3.69) indicated for this sample that respondents do know when a mammogram is recommended and that lack of knowledge of screening guidelines is not a barrier. However, these questions do not actually evaluate if the subject truly knows screening guidelines and is not a valid scale for assessing knowledge of screening guidelines. The questions in this study only ask for her perception of her knowledge of screening guidelines. There is no way to know from these questions if the 45 Table 6 quency and percent of lack of knowledge of ACS gg'delines (n=179) Don’mow when needed I forget when to have n % n % Strongly agree 4 2.4 3 1.8 Agree 18 10.7 35 20.7 Disagree 83 49.4 73 43.2 Stongly disagree 63 37.5 58 34.3 Missing 11 10 respondent actually knows the ACS guidelines for mammography. Some researchers indicate that lack of knowledge of screening guidelines is a barrier to mammography (Horton et al., 1992; Bastini et al., 1991; Glanz et al., 1992). Some disagree (Miller & Champion, 1993). For this sample, lack of knowledge of screening guidelines was not found to be a barrier. In summation none of the barriers investigated, cost, lack of physician referral, discomfort, fear of finding cancer, inaccessibility, and lack of knowledge of screening guidelines were found to be barriers. None of the individual questions or scales yielded statistical evidence of a barrier. However, approximately 24% (p=40) of the subjects have some fears about finding cancer if they obtain a mammogram, approximately 18%(p=31) find obtaining a mammogram inconvenient, and 22 % (p=3 8) forget when they are 46 supposed to have a mammogram. Forty-eight percent (p=83) agree mammography is unpleasant, 37.5% (p=64) indicated mammography made her feel uncomfortable, and 35.5% (p=60) agree mammography is painful. These women should not be overlooked. The barriers selected for this study are regularly cited in the literature for first time mammography, however barriers for compliance to ACS guidelines has only been explored recently. For this sample set there are probably other barriers to regular mammography that need to be discovered. The Health Belief Model is a good guide for this type of study as it addresses acquisition of preventive and screening services. However, this investigator did not attempt to prove the effectiveness of the model. Discussion Limitations One of the main limitations of this study was sample bias in that it does not represent all American women or even the general woman population of the Greater Lansing area. The majority of women in this study were educated, white, well above poverty level, and employed. The sample of this study was different from many other studies because the higher sociodemographic characteristics indicated the women were educated, white, middle class, and employed. The literature finds this type of woman is more likely to seek screening, however the women in this study still did not meet screening guidelines. This could be why they rejected all of the selected barriers. Consequently results of this study cannot be generalized to women who are less well educated, poor, or of minority race. 47 Another limitation was the subjects in the sample were all self selected by voluntarily returning the questionnaire. Those women not interested in preventive health or breast issues would be less likely to take the time to complete along questionnaire. Conversely women very interested in breast and health issues may have been more likely to return the questionnaire. Due to the fact that the subjects in the study had at least one mammogram, one could imply they were interested in health maintenance and promotion and would be more likely to participate in a survey. This type of woman is less likely to perceive barriers to mammography as in contrast to a woman who is very closed to screening and feels it is unnecessary or is simply a plot by health care providers to make more money. Again a self selected subject may indicate less barriers to mammography than a woman afraid of or not interested in women’s health issues resulting in a limitation for this study. The study also relied on self reporting and retrospection requiring the subjects to recall information such as the date of her last mammogram. The subject had to write down a month and year of her last mammogram in the survey. Time seems to go by faster than people are aware. If the subjects incorrectly reported the date, this process could lead to obvious inaccuracies, and no attempt was made to validate the date of last mammogram with the subject’s physician or if the attitudes and beliefs reported were valid. Use of secondary data was another limitation to this study. There are problems with sureness of fit when taking questions fi'om another study and incorporating them into a new study. There is a problem with reliability when selecting specific questions and trying to form new scales. This was encountered when the anxiety scale had a reliability of 0.56. Also are the old 48 questions asking the same thing that the new study is investigating? Some of the questions when evaluated a second time did not represent the barrier well. For example the physician referral questions did not evaluate if a physician was recommending mammography on a regular basis according to ACS guidelines. The questions only evaluated if the physician had ever recommended a mammogram. Consequently different questions may have changed the outcome of the physician referral banier. Also the knowledge of screening guidelines questions did not evaluate the subjects’ knowledge of screening guidelines but only her perception of her knowledge. Questions evaluating the subjects’ knowledge of screening guidelines may have changed the result of that barrier. No statistical analysis was attempted in this study to correlate barriers or to show cause and effect. Although some women identified a barrier, one cannot conclude that barrier is the reason they did not acquire another mammogram on a timely basis. It must also be remembered this study is about women who have already had one mammogram. These results cannot be applied to women who have never had a mammogram. Another limitation of this study was the limited literature available concerning mammography and adherence to screening guidelines. Most of the research studies addressed first time mammography. With so few documented barriers specific to regular mammography it was difficult to forge ahead with this study. The same concepts from the Health Belief Model should apply, as a first or subsequent mammogram is a screening or preventive behavior. To make the model work, more emphasis may need to be placed on creating benefits if few actual barriers are found. The same 49 barriers should be explored to see if they are identified by women obtaining subsequent mammograms. However a prior experience with mammography may nullify some known barriers to first time mammography. Research must continue to identify barriers to repeat mammography. Suggestions for further research will follow later in this discussion. Implications for Advanced Nursing Practice Breast cancer is the second major cause of cancer death today for women in the U. S. Early detection and treatment is the most effective avenue to saving lives and decreasing morbidity. The best tool available for early detection of breast cancer is mammography. The number of women utilizing a single mammogram is increasing but many women are not obtaining mammography on a regular basis. To be consistently effective in the early detection of breast cancer a mammogram needs to be done at regular intervals. The following discussion will relate how the advanced practice nurse has a critical role in helping women meet this objective. None of the barriers, cost, lack of physician referral, discomfort, fear of finding cancer, inaccessibility, and lack of knowledge of screening guidelines, investigated in this study were identified. The subjects were primarily white, educated, and middle class. They had had one mammogram but had not obtained one recently within the ACS guidelines. Cost was not identified in this study and is not a barrier for this sample. In primary care the advanced practice nurse should be aware if the client has insurance coverage. If the client is insured the CNS should look for other barriers to mammography as cost is probably not one of them. However the CNS should be aware of cost as a possible barrier in primary care as not all 50 clients will be as well off as the sample. The CNS should be aware of local programs available to assist low income women with mammography screening, or refer to the local health department which currently has an excellent program for women age 40 and older who have low income or no insurance. Lack of physician referral was not identified as a barrier in this particular study. In advanced practice the CNS should continue to recommend mammography on a regular basis as many mammography units require referral from a health care provider. The CNS should follow up on the clients to make sure a mammography was obtained. The CNS should be aware of other barriers to regular mammography. Some women simply refuse mammography even though recommended by her health care provider. The CNS can act as assessor to discover the barrier, and as educator to inform the client about breast cancer. Emphasis should be placed on early detection and improved prognosis if found early, versus if discovered after metastasis. Finally the CNS can act as counselor and change agent by listening to and addressing the client’s fears, by discussing possible consequences if she doesn’t get a mammogram, and by being very firm that the CNS’ recommendation is use of regular mammography. The CNS can use the HBM as a guide in assessing a client. Is the client aware of breast cancer? Does she feel it is serious? Is she susceptible? Is breast cancer a threat? Does she know about mammography? Can she express any benefits or barriers to mammography? This is an excellent time for informing clients of the increased cure rate when breast cancer is found 51 and treated early. The client should then be asked when a mammogram can be scheduled for her. The CNS in a collaborative role can encourage fellow primary care providers to utilize screening mammography. The advanced practice nurse can plan an inservice or continuing education session for providers and nurses on breast cancer, early detection, and treatment. A discussion of successes with regular screening can inspire other providers to be more vigilant in recommending regular mammography. A discussion of current guideline recommendations can help keep co-providers abreast of any new changes in the recommendations. Also a discussion of situations that could lead to possible legal litigation, such as not following up if a client fails to get her mammogram, may be helpful to inspire other providers to take breast health seriously. The advanced practice nurse can also instigate peer review meetings on a regular basis and be especially vigilant to look for documentation of regular screening mammograms. As noted earlier the questions used in this study for the physician referral barrier were not well suited to evaluate adherence to regular screening mammography. The questions did not ask if the physician had recommended mammography within the last year or two according to age appropriate guidelines. It is possible this study disagreed with the literature for this reason. In any event the CNS must incorporate regular mammography into the health maintenance portion of practice and refer clients for mammography on a regular basis. In many areas a referral is still needed for a woman to obtain a mammogram. 52 The CNS in a community role can speak to women’s groups about health care and screening guidelines. The CNS can be an advocate to empower women to play a more active role in their health maintenance and screening strategies. Women should be empowered to ask their health care providers for a mammogram if it has not been recommended. Women should know screening guidelines and the recommendations for their age group. Overall this study did not indicate discomfort as a barrier to mammography. So the CNS needs to be looking for other deterrents to mammography. However nearly one-half of participants (48%) indicated mammography was unpleasant. The CNS needs to be aware many women do not enjoy undergoing a mammogram. The participants in this study had already experienced one mammogram. So their responses were related to actual experience not a preconceived idea. The CNS in counseling clients could draw a comparison with other procedures, such as tetanus shots or dental work, that may be unpleasant but people still comply or make their children comply. The client needs to understand why compression is important for a clear mammogram reading and that every effort will be made to accomplish the procedure as quickly and gently as possible. Every attempt should be made to make the client comfortable during the mammogram procedure. A female technician, privacy, and comfortable surroundings in the exam room are suggestions to decrease unpleasantness. The CNS can also in a collaborative role communicate with the technician complaints of pain etc. that clients report. The CNS can offer suggestions to the technician to improve the client’s perception of the procedure. An attempt should be made to schedule 53 mammography as soon after monthly menses as breast are less sensitive during that time period. Anxiety and fear of finding cancer were not identified in this study as barriers to mammography. The advanced practice nurse will need to listen carefully, ask open ended questions, and assess for other reasons why the client did not obtain a mammogram. However in this study 24% (p=40) admitted to some anxiety about obtaining a mammogram. In primary care _ practice the advanced practice nurse will also have clients who are afraid to look for trouble. The CNS should inform clients as to the value of looking for and finding problems early when they are more curable and less disfiguring. Explore the client’s beliefs as to whether breast cancer is curable if found early or is it always a death sentence. The CNS should also strive to communicate as quickly as possible negative test results to alleviate some of the worry and anxiety associated with waiting and not knowing results. The participants in this study did not identify inaccessibility as a barrier either. The respondents were probably not rural which the literature indicates as a main access banier. However the participants were employed which the literature has indicated as a problem for access to mammography. If the CNS knows the client has no problem getting off work to get a mammogram or can get a mammogram outside of work hours, the CNS should look for other barriers. However 18% (p=31) of the women in the study did find mammography inconvenient to arrange. The CNS in primary care should be aware of this potential barrier among clients. The CNS should be aware of available marmnography centers in the area and the hours they are open. The schedules of employed women often conflict with regular business hours. 54 The CNS could also act as change agent to instigate extended hours for the mammography center if it proves to be a barrier in the area. The CNS could investigate the number of potential people affected by limited mammography hours. To show need perhaps a poll of employed women who would like extended hours could be done. The CNS must also project how extended hours could be beneficial to the mammography unit as well as the client. Lack of knowledge of mammography screening guidelines was not found to be a barrier among the participants of this study. In primary care if a noncompliant client knows the recommended interval suggested for mammography for her age group, other barriers need to be investigated. As noted earlier the questions used in this study did not actually measure a respondent’s knowledge of screening guidelines. The questions merely asked if they knew when they needed a mammogram and if they forgot when they are supposed to get a mammogram. These questions evaluate the perception of the respondent’s knowledge. Some women think they only need mammography when they have symptoms. In this study 22% (p=3 8) of respondents agree they forget when they are supposed to get a mammogram. For those women the CNS should remind the client and offer to set up her appointment. A yearly reminder letter can be sent to clients stating it is time to get your mammogram. Videos can be running in the waiting room of primary care offices that emphasize the need for mammography. The media is helpful in informing women of when a mammogram is needed, but the media should speak more directly to the fact of women needing regular annual mammograms if over the age of 50. The advanced practice nurse should inform clients of the ACS recommendations 55 for screening guidelines. Posters in the primary care setting can be very effective. The client should understand a mammogram has limitations and should be combined with a yearly clinical breast exam and monthly breast self exam if breast cancer morbidity and mortality rates are to be reduced. The advanced practice nurse can be actively involved with the local ACS and organize a mammogram drive, or write articles in the local papers encouraging mammography, or publish testimonials fiom local women who are “living” proof that mammography is life saving. This study dealt specifically with employed women. Nearly one-half of the work force is made up of women, and women are remaining in the work place more years than ever before (Glanz et al., 1992). As more women over the age of 40 continue to be employed, breast cancer can affect a large number of employees and employers. The worksite can be an excellent place to contact large groups of women. There is also the aspect of social support among co-workers to encourage preventive screening behaviors. The researchers report spouses or significant others are important in encouraging women to obtain mammography (Bastini et al., 1991; Glanz et al., 1992). Thirty percent of the women in this study indicated they were single. The advanced practice nurse should be concerned about social support for this group of women. Social support could be found among co-workers, other family members or the therapeutic use of self on the part of the advanced practice nurse. The advanced practice nurse needs to be creative in finding ways to encourage social support. Worksite wellness programs can save lives, decrease morbidity, increase productivity, and decrease the cost of long term care if breast cancer 56 is detected in its early stages. The CNS working in industrial settings, etc., can be a very positive influence on women and health care maintenance. There is also a need to stress health screening services as being important along with sick benefits when deciding on insurance coverage if the employee has a choice. The advanced practice nurse can initiate conversations among women about mammography and encourage women individually to obtain a regular screening mammogram. Posters about the work place concerning breast cancer and screening mammography can also have an impact on women and their mates. The CNS can also initiate a policy for time off work to get a mammogram, or arrange for a mobile mammography van to come to the worksite. The CNS can stress to employers their responsibility to contribute to the well being of their employees’ health. The are also benefits to employers such as decreased costs for lost work hours, decreased cost for training and finding replacement employees, less paper work, and not having to pay continued benefits to an ill employee who is not productive for the company. There were no significant barriers to repeat mammography as evidenced in this study, but perhaps there were no perceived benefits to women either? According to the Health Belief Model the benefits must outweigh the barriers for a woman to seek mammography. To make this model work there have to be benefits. For working women, the advanced practice nurse could work with employers to create benefits. The advanced practice nurse could seek or create benefits that will encourage women to obtain repeat mammography. Perhaps a paid day off with overtime wages when getting screening procedures such as a pap smear, mammogram, and dental check up would be 57 a strong enough benefit to encourage women to get a mammogram. Maybe a cash rebate from an employer if a woman gets a mammogram, or a voucher at a nice restaurant for two. The advanced practice nurse needs to be creative to find other benefits, perhaps other forms of community support could be found to promote benefits. The advanced practice nurse should try to identify with the client what other benefits would be valued. The Health Belief Model as related to mammography acquisition may need to be modified to indicate an increase in benefits may be needed to encourage the action of obtaining a mammogram. The CNS in primary care should be a vigilant crusader for regular mammography by making mammography an integral part of health maintenance and promotion. The CNS should be politically active to help improve access to health maintenance for all women. The CNS should have an understanding of the players in the delivery of health maintenance and screening behaviors. There are providers, payers of services, and policy makers. All three groups need to be persuaded of the value of regular mammography. By joining nursing organizations the advanced practice nurse can band together with other nurse providers to introduce new bills or lobby in the legislature for better health care for women. Nursing organizations can have a stronger voice than individuals when trying to impact the health care and political systems. Should health care screening be legislated? We require children to be immunized to attend public school, perhaps requirements to join an HMO, Medicare, other insurances, or to obtain life insurance could include mandatory screening techniques including mammography. This approach 58 could result in decreased payments for expensive treatments and long term care, and save lives. In summary the CNS can be a very effective agent in the fight against breast cancer in primary care and in the community, in health care systems, and in political systems. The CNS has many roles as educator, advocate, clinician, assessor, counselor, change agent, collaborator, role model, and researcher. The CNS needs to be a vigilant advocate of regular mammography and continue to diligently assess for other barriers that deter mammogram acquisition and compliance. Recommendations for further research The goal of this research was to add to the existing knowledge of barriers to regular mammography. The barriers explored were cost, physician referral, discomfort, fear of finding cancer, inaccessibility, and lack of knowledge of screening guidelines. The study results indicated none of the listed barriers were identified by the sample. Consequently there must be other reasons why this sample did not acquire mammography on a timely basis. If compliance to mammography is to increase, further research related to barriers to timely mammography is needed. The numbers are increasing for women who are obtaining first time mammography. But researchers need to ask more questions about why women are not obtaining mammography on a regular basis. Findings from this study would indicate there could be barriers other than those utilized in this investigation. This study could be repeated investigating other groups of women with similar sociodemographic characteristics to see if they concur with the 59 findings of this study. Further questions concerning physician referral should evaluate if the physician is recommending mammography according to ACS guidelines or in a haphazard fashion. Further questions concerning knowledge of screening guidelines should actually test the subject’s knowledge not just ask if she knows when to get a mammogram. If the subject agrees a mammogram is unpleasant, uncomfortable, or inconvenient, a second question could be added asking if the problem is severe enough to influence her to put ofl‘ getting a mammogram. Statistical analysis of this study only evaluated if the subject was currently delinquent in acquiring mammography. Further research could evaluate if a subject is slightly delinquent (up to one year), or decidedly delinquent (two or more years). The barriers could then be assessed again to see if they are different for the two delinquent groups. Questions addressing procrastination could be added. Research will need to include open ended questions asking why women have not been compliant with mammography. Focus groups could be used to encourage women to talk about why they have not gotten a mammogram within recommended guidelines. This may yield some ideas about other barriers. Individual interviews with noncompliance women similar to the sample group may yield new barriers. The researcher should use questions that cover existing barriers and also an open ended question of why didn’t you get your mammogram on time. The researcher may need to use probing questions concerning the subject’s answer to why. The researcher should not alienate the subject but project a genuine attitude of wanting to find out the barriers to regular mammography. Other questions could be, are you 60 procrastinating? Do you feel there are no benefits to getting a mammogram according to guidelines? Is a yearly mammogram too frequent? Is a yearly mammogram a waste of resources? Do your fiiends get regular mammograms? Do you feel confident you are free of breast cancer if you have one negative mammogram? Do you feel at risk for breast cancer? Are you afraid of radiation exposure? If new baniers are identified another study using a similar sample could be conducted. Care should be taken to be sure questions address compliance issues not just an initial mammogram. This approach may identify new barriers that need to be addressed. As women have become more compliant with obtaining at least a first mammogram, more attention needs to be focused on finding barriers to regular mammography. While a single mammogram can be an effective tool in screening for breast cancer, regular mammography is more effective in picking up subtle changes in breast tissue and detecting breast cancer in its first stages. A longitudinal study could be done with a similar sample, repeating the questions of this study along with others exploring more barriers and possible benefits to mammography. Another section could address intentions on obtaining a mammogram. A follow up contact six months later could be used to see if the respondents had obtained a mammogram, and if the questionnaire had served as a cue to action. Yearly questionnaires could be sent for up to five years exploring intentions and new barriers and benefits as they arise. It would be interesting to find out how long it takes until mammography becomes a very integral part of a woman’s screening and prevention routine. 61 The workplace is an excellent opportunity to contact a large group of women, with over 67% women now in the work force (US. Department of Labor, 1991). Further research is needed to explore how best to impact this large group of women with the positive and practical aspects of screening techniques and health care. How does one empower women to become more involved in demanding screening health care? How does one educate women it is better to look early for problems rather than to wait until a problem is evident? Other groups such as the nonemployed, minorities, and poor also need to be surveyed for barriers to regular mammography. Women can be contacted through local church groups, civic minded groups, craft guilds, professional groups or simply survey women in the grocery store or ask if they would be willing to participate in a study. Summag The goal of this study was to add one more piece to the scientific knowledge concerning mammogram acquisition and compliance to guidelines. The study was a descriptive secondary analysis of data exploring barriers to regular mammography among employed women using the Health Belief Model framework. Respondents in the study rejected all of the selected barriers. However, findings of the study indicate discomfort is a barrier to some women and also, to a lesser degree, inconvenience, fear of finding something abnormal, and lack of knowledge about screening guidelines. The CNS should also be open to the possibility of other barriers related to mammography compliance. The CNS’ overall goal in this area is to decrease the morbidity and mortality of breast cancer among women. The best way to accomplish this goal is to increase women’s use of regular mammography. APPENDICES APPENDIX A (32 APPENDIX A HEALTH case’mcrrces: A, vomrrr sunvrr This questionnaire is being distributed to women 35 years of age and older at their worksite. The purpose of the questionnaire is to learn more about breast cancer screen ng. Please take 20-30 minutes to answer these questions. When you are finished, return the questionnaire in stamped addressed envelope. In up-coming weeks all women in the worksite will receive information about bre:;t cancer screening. A follow-up questionnaire will be mailed in 6 men s. This project is funded by the Michigan Department of Public Health and is being carried out by Investigators at Michigan State University, College of Nursing and College of Human Medicine. Your participation is voluntary, and your answers to all questions will remain strictly confidential. hank you for your time in completing these questions. Please return this questionnaire anthin two weeks. To: Barbara Given, Ph.D., R.N., F.A.A.N. A-230 Life Sciences Bldg. .College of Nursing ' Hichi an State University East ansing. it! 48824 63 uses Page 1 ID ' _ _ 1-4 CARD 5-6 . HAVE 1 7 PERSONAL HISTORY STUDY 5 8 DATE _ /_ _ /_ _ 9-14 AGENCY 15 The first set of questions ask you about your personal health and family history. Please write in the date of your birth. (WRITE 1H) .—-—J —J _ o ’ ----- No. Date Yr. - 16 11 13 19 20 21 In the past five years, how many times have you had: a. Complete physical exam __ Hrite in! 22 b. Dental check-up __Hrite in! c. Pap smear :Hrite in! Have you ever used birth control pills? (CHECK ONE) _YES (1) __‘NO (2) (If N0, go to question 0 4) _Don't Know (3) (GO TO 13) 53 l” If YES, for approximately how many years have you taken (or did you take:| birth control pills? ___(Hrite in total number of years) I? 57 Have you ever been pregnant? (CHECK ONE) _ YES (1) _ NO (2) (1f NO, go to question 5) 53 If YES, Flow many pregnancies have you 5.3? WRITE IN) __ 55 35 How many full term deliveries (9 months) have you had? (NRITE 1N) _ 3T .3? what was your e at the time of the delivery of our first bab ? HRITE 1N voun i2: __ . y y fl 5? Have you ever taken hormones such as: (Check one for each) a Estrogen __ YES 1 _ NO 2 __ DON’T KNOH 3 _ 35 b Premarin __ YES 1 __ NO 2 __ DON’T KNOH 3 __ 36 c Provera __ YES __ NO 2 __ DON’T KNOH 3 _ 37 d DES -- ___YES NO _DON'TKNOH 3 _38 e Other (PLEASE SPECIFY) .... _. 39 40 At what age did you begin menses (menstrual periods)? 71’ 75 __(Hrite in age) 64 UUCS - 10 _ .. Page 2 ' CARD " Have you reached menopause? (CHECK ONE) __ YES (1) _ NO (2) _ DON'T KNOii (3) If YES at what age did you begin menopause? (Hrite'in age) __ , IT IS 8. Have you ever had a hysterectomy (uterus removed)? (CHECK ONE) _ No (1) _ Uterus only (2) _ Uterus and ovaries removed. (3) _ Don’t know (4) _ Other (Please specify: (5) l 31 313i 9. How often do you usually eat well-balanced meals? (CHECK ONE) _ Less than once a month (I) _ At least once a month, bu not every week (2) _ At least once a week. but not every day (3) _ Almost every day (4) 10. How often do you usually exercise? (CHECK ONE) _ Less than once a month' (I) ._ At least once a month. bu not,every week (2) _ At least once a week. but not every day (3) _ Almost every day (4) 11. Do you currently smoke? (CHECK ONE) _YES (1) ___NO (2) (Co to question 12) If YES. for how many years? __ (Years) 4 51' If And how many packs per day? __ 53 12. Do you currently drink-alcoholic beverages daily? (CHECK ONE) 51 __YES (1) _NO (2) 13. Have you ever had a breast may (a surgical procedure on your breast)? (CHECK ONE) _ YES (1) __ NO (2) (If NO. go to question 14) SS ‘ If YES. what wereThe results? (CW‘ __.Positive for cancer (I __ Negative for cancer 2 . _ Positive for other breast disease (3; _ Negative for other breast disease 4 _ Don’t knowL results (5) 5'6 65 uses 10 .... Page 3 CM - - 14. Have you my; been diagnosed with breast cancer? (CHECK ONE) ' 57 _ YES (1) __ NO (2) (if NO. go to question 15) If YES, what year were you diagnosed? (Hrite in year) .3 g_ If you were diagnosed with breast cancer, what treatment did you receive? (CHECK ALL THAT APPLY) - _ Mastectomy (Surgical removal of the breast) __ SO _ Lumpectomy or wide excision (Removal of lung only from breast) _ 61 _ Radiation (X-Ray treatment to breast) _ 62 _ Chemotherapy (Cancer drugs) __ 63 _ Hormones _ 64 __ Other (Please specify 1 _ SS The next questions focus on family history of breast cancer. 15. Has your mother ever had breast cancer? (CHECK ALL THAT APPLY) _ Yes (1) (Age of diagnosis) __ Mother’s age at time of Death (Hrite in age) 0 (2) n’t know (3) 16. Have any of your sisters had breast cancer? (CHECK ONE) I6 _ Yes (1) _ No (2) _ Have no sisters (3) _ Don’t Know(4) If YES. Hrite in Number of Sisters diagnosed with cancer: I7 Sisters’age at time of cancer dia nosis:' _ Hrite in age) _(Year of diagnosis) __ __ _ _ 18 19 20 21 _ (Hrite in age) _(Year of diagnosis) __ _ _ 22 23 24 i? _ (Hrite in age) _(Year of diagnosis) _ __ __ __ (it it. ‘ ) (Y f di i ’ 26 27 28 29 _ renae_;earo anoss ____, g g 30 31 32 33 Has either of your grandmothers had breast cancer? (CHECK ONE) 51’ _ Yes 1 _ Grandmother’s a e at time of diagnosis i)’ 9 55 3'6 __ No ( __ Don’t Know (3) 665 ve‘cs ‘ ’ ID __ Page 4 CARD Have any of your aunts had breast cancer? (CHECK ONE) _ m (1) _ No (2) _ No Aunts (3) ' _ Don’t Know 14) , umber of aunts diagnosed with breasticancer: ’ .___ (Hrite in f of aunts with cancer) 33 39 Have any of your daughters had breast cancer? (CHECK ONE) 4'6 _.Yes (1) __ No (an _No Daughters (3) ___Don't ow (4) :Oaughters are too young (5) . umber of Dazghters diagnosed with breast‘éancer: 3 __ (Hrite in n I If ' , 1 MAMMOGRAH EXAM S A mammogram is an K-ray that is taken of the breasts to find an abnorma y be further examined for cancer. The mammogram machine presses against the breast while a front and side view X-ray of each breast is taken: The next set of questions focus on the mammogram. Have you ever had a mammogram? (CHECK ONE) ' 1'5 ___ YES (1) (go to question 2) ' ___ NO (2) , why have you never had a mammogram? (Plbase Hrite inz) I7 I5 (Co to Question 3) If YES to question 1, about how often do you have a-mammogram? (CHECK ONE) I9 _More often than every year (1) :Each year (2) :Every two years (3) _Every three ears (4) _Less often t an every three years (5) 2a. Hhen did you have your last mammogram? (HRITE 1N) ______/____ Month Year 2O 21' H 23' 2b. Which of the following best describes what prompted you to have your most recent mammogram? (CHECK ALL THAT APPLY) _To follow up a breast problem] something unusual (1) .__ 24 _1t was part of my routine check- -up 2) __ 25 :A health care professional recommen ed it (3) ' __ 26 ___ _A friend or relative was recently diagnosed with a breast problem (4) __ 27 ___ A relative or friend recommended that 1 have a mammogram.(5) 28 ___ Other (6) Please Specify: HOCS Page 5 677 IO _M_ CARDI_,_ 3. How much do you agree or disagree with each of the following statements about mammograms? (CIRCLE ONE RESPONSE EOR EACH) STRONGLY DISAGREE - orsacarr AGREE STRONGLY AGREE p. q. 1‘. ram: is an embarrassing procedure is an unpleasant procedure is a cost hardship is sinful or physically wou d make me feel anxious is inconvenient to arrange causes me concern about is not available in my area doesn’t seem necessary is not worth the effort it makes me feel uncomfortable I don’t know when I need a I have too many other worries to have a mammogram I’m afraid something abnormal would be found I want t9 improve my chances of early detection of an abnorma "k ' 1 want to eep control of my health I’m Just too busy to have a mammogram I forget when I am supposed to have,the mammogram I don’t really know how to ask to have a mammogram, I am confident the mammography will be done correctly I want to be the first to know if something is wrong "h doctor has never suggested t at I have a mammogram My health care Professional has digsgungggg me from having a mammogram OTHER REASONS FOR NOT HAVING A MAMMOGRAN (Hrite in) u u ”uhuuuufluuwflu HH--- NNNNNNNN N N NNNNNNNNNNNNN U U “U““UUUHUUHQDU UUUUUUUU . - OO&O&OOO‘-..‘ b“.‘fi.¢b In the next year. how likely are you to have a mumogram? (CHECK ONE) Definitel (1) Very like y (2) Somewhat likely (3; Not Very Likely 4 Not at all likely (S) 2. 68 uses ID _ _ Page 6 - CARD goEyhat extent is getting a mammogram on a regular basis a priority for you? (CHECK N 57 __ Not at all (1) _ To a small extent (2) ___,To some extent (3) ___ To a great extent (4) .10 , 1 4 Farm SELF EXAMINATION] cam gs, s-e HAVE 1 - 7 STUDY 1 8 DATE __l_ _l_ _ 9-14 AGENCY_ _ _ 15 Breast self examination (BSE) is when you have been trained by a health care professional to carry out a specific procedure once a month to check yggn_gun breasts for lumps or unusual changes. The fo lowing questions relate to breast self examination. (Answer these questions related to you following a specific procedure monthly and have been taught specifically to do so.) The procedure includes inspection. palpation. frequency and positioning. Oid ANYONE ever teach you to do Breast Self Examination (BSE) monthly following a ,specific procedure? (CHECK ONE) TE ___ YES (1) ___ NO (2) (Co'to Question 2) If YES, who ..mgnt you roomy) _Physician (1) ° ' , , - __,17 __Nurse (2) _ 13 :Other Health Professional (3) __ 19 :Self Instructional Booklet (4) _ 20 :Other (5) (Please specify: 1 __ 21 __lirite n the year first taught__ __ __ 22 23 Have you ever done a Breast Self Examination (BSE) following a specific procedure? (CHECK ONE) . 2T _ Yes 1) ___ No ( ) (If No. go to question 7) ___ No, but 1 do check my breasts sometimes (3) (go to question 4) Are you_CURRENTLY practicing Breast Self Examinations according to a procedure? 25 _ Yes (1) . ___ No have never racticed Breast Self Examination (2) ___ No not current y, but have practiced self exam in past (3) If‘NOT currently conducting BSE’but did in the past, why did you stop practicing BSE? (Please Hrite in: 23 27 Have YOU ever discovered anything unusual in your breast? (CHECK ONE) _NO. never found anything abnormal (1) (Go to question 45) _YES. found abnormal mass or lump (2 ) €59 vecs ID __ Page 7 CARD If YES to uestion 44, did you ever see a health care professional about an aEnormal finding Ehat you found while performing a breast self exam? (CHECK ONE) - .. __ YES (I) _ NO (2) 29 About how often do you examine your own breasts according to specific guidelines? (CHECK ONE) SD ___ Never (1) _Once a month (2) 3T _Nore than once a month (3) _Yearly (4) _Other (specify) (5) Mhen was the you examined your own breasts using a specific procedure? (CHECK ONE) ' . Over a year ago (I) - - Over 6 months ago ut within3 the past year (2) Between 3 and 6 months ago Between 1 and 3 monthsa _Hithin the last month (5?04 ' NOTE: Even inyou havi’EIIIRIdone a Breast Self Examination (BSE). please answer the following questions. . lllll dNEih. next year, how likely are you to do HONIHLI breast self examinations? (CHECK 33' Definitely (1) Very likely (2) Somewhat likely (3 Not very likely (4 _Not at all likely (5) Indicate by CIRCLINC (ONE RESPONSE) how much you agree with each of the following statements about Breast Self Examinations? TO TO TO A A NOT SMALL SOME GREAT AT ALL EXTENT EXTENT EXTENT Breast Siif Examination: a. is an embarrassing procedure b. is an unpleasant procedure c. is painful or physically uncomfortable ‘ makes me feel anxious ‘ doesn’t seem necessary is not worth the effort makes me {:31 uncomfortable I don't know when 1 need to do exams' I wouldn't know what is normal I have too many other worries' I’m afraid of finding something abnormal' 1 want to improve my chances of early detection of an abnormality I want to keep control of my health f????9?99 pun—nununnuu ~ ------- u uuuwuuuwuuuu & ..¥&&8%..... llllllllllll B C .-e 7() Page 8 CARD" TO A T0 TO A NOT SHALL SONE GREAT AT ALL EXTENT EXTENT EXTENT DFEast Self Examinition: n. I’m Just too busy 1 47 o. I forget when I am supposed to do the l 1 Z 48 49 so STE!!! self-exam p I don' t really know how to do the breast self-exam q. No one has ever taught me the correct procedure 1 r Other (please write in: N N ”N u a» we» a. a. as. PHYSICAL (CLINICAL) BREAST EXAN A Physical (Clinical) Breast Examination is when the breast is felt for lumps or abnormalities by a doctor or other health professional. The following questions deal with examinations done be Health Care Professionals. ' Hm you ever had a WWW Musical? (cuecx our) ' _vrs (1) _No (2) [co to Question 2] - S? If YES, about how ofien do you have physical (clinical) breast examinations by a health care professional? (CHECK ONE) . 55 Each year (1) Every two years (2) 55 Less often than every two years (3 Don't Know if I ever had a physica (Clinical) breast exam (4) 5:E}ES. why did you have your most recent physical (clinical) breast exam? (CHECK 53 _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 diagnos with a breast problem (4) :Other (5) (Please Specify: 57 53 In the NEXT YEAR, how likely are you to have a Physical (Clinical) Breast Examination? (CHECK ONE) _Definitel (1) :Very like y (2) :Somewhat likely (3) :Not Very likely :Not at all likely (5) '71 vet: to - - Page 9 M .. .. Hho USUALLY conducts your physical (clinical) breast exams? (CHECK ONE) ED Never had a physical (clinical) examination (1) Family practice. physician, or internist (2) Obstetrician, gynecologist or other specialist (3) Surgeon (4) Nurse practitioner or clinical nurse specialist (5) Technician at mammography center (6) __,__ ___ Other (7) (Please Specify l 1 2 3b. Hhat is the sex of the person who USUALLY conducts your Physical Breast exams? (CHECK ONE) ‘5 ___ Male (1) ___ Female (2) who would you prefer complete your clinical breast examination? (CHECK ONE) 61 ___ Family physician or internist (1) ___ Gynecologist or other specialist (2) ___ Specialist in breast care (3) __ Surgeon (4) ___ Nurse practitioner or Clinical Nurse Specialist (5) __ ___ Other (6) (Hrite in 65 66 Do you have a preference as to the sex of the health care professional who performs your clinical (physical) breast exams? (CHECK ONE) . 3’. ,__, Prefer female (I) ___ Prefer male (2): ___ No preference (3) How mgch do you agree or disagree with the following statements about clinical breast exams A Physical (Clinical) STRONGLY STRONGLY ' OISAGREE OISAGREE AGREE AGREE a. is an embarrassing procedure 1 2 3 4 __,6B b. is an unpleasant procedure 1 2 3 4 __ 69 c. is a hardship due to cost 1 2 3 4 __ 70 d. is painful or physically 1 2 3 4 ___71 uncomfortable e. would make me feel anxious 1 2 3 4 __ 72 f. is convenient to arrange I 2 3 4 __ 73 9. doesn’t seem necessary 1 2 3 4 ,__ 74 h. is not worth the effort 1 2 3 4 __ 75 1. makes me feel uncomfortable I 2 3 4 __ 76 J.- Clinical exam is important to early I 2 3 4 __ 77 detection of an abnormality k. I don’t know when 1 need exams 1 2 3 4 __ 76 l. 1 have too many other worries 1 2 3 4 __ 79 m. I’m afraid something would be 1 2 3 4 BO found by clinical exam n. I want to improve my chances of 1 2 3 4 .__ 61 early detection so have an exam '72 HBCS Page 10 ID _ _ _ 1-4 CARD 5-6 HAVE 1 7 5m MY 1 8 DATE _/_ J_ _ 9-14 AGENCY_ _ _ 15 A Physical (Clinical) STRONGLY STRONGLY ° OISAGREE OISAGREE AGREE AGREE o. I want to keep control of my health 1 2 3 4 __ 16 p. I’m Just too usy to have an exam 1 2 3 4 __ 17 q. I forget when 1 am supposed to have 1 2 3 4 __ 1B exams r. I don’t really know how to.ask for 1 2 3 4 __ 19 an exam 1 am confident thg_gxgm_1111_hg 1 2 3 4 __ 20 W111 t. My doctor has never suggested 1 2 3 4 __ 21 having exam u. Other Comments: (please write in) __ __ 22 23 If you have breast cancer, how confident are you that an abnormality could be detected by a clinical breast examination conducted by a health care professional? (CHECK ONE) Extremely Confident (I) . IT Very Confident (2) , Somewhat Confident 3 Not Very Confident Not al All Confident (5) The following set of questions focus on eariy :etection of breast cancer. Early detection means finding an abnormality in the early stages. For breast cancer this means when the lump is small and has not spread to other areas of the body. If found early enough, breast cancer can be cured. (CHECK ONE) ___ Strongly Agree (1) _Agree (2) _Disagree (3) _Strongly Disa ree (4) _Don’ rm «(5? Unless she has symptoms, a woman doesn’t need a mammogram. (CHECK ONE) ___ Strongly Agree (1) _Agree (2) _Disagree (3) :Strongly Disa ree (4) _Don' t know (5 '73 vats In Page 11 CM : : Nammograms can detect early abnormalities likely to be breast cancer. (CHECK ONE) _Strongly Agree (1) :Agree (2) O sagree (3) :Stronglyw Oisa ree (4) _Don' tn (5? One; a person develops cancer. it is usually too late to do anything about it. (CHECK ONE 23 ___ Strongly Agree (1) _A 02H ___ O sagree (3) _Strongly Disa ree (4) _Oon’ t knw «(5 Early detection would improve one's chances for cure of breast cancer? (CHECK ONE) _Strongly Agree (1) ree :0 sagree 3) :Stronglyw isa ree (4) _Oon’ tn (5? If you had a lump. in our breast.'how confident do you feel that 19“ would be able to detect it? (CHECK ONE. 55 _Not at all confident (1) :Somewhat confident (2) :Ouite confident (3) _Extremely confiden (4) . ‘How confident are you that a aggressignal physical (clinical) breast examination could detect a lump in a woman’s breast? (CHECK ONE) _Not at all confident (1) :Somewhat confident (2) :Ouite confident (3) :Extremely confident (4) Now confident are you that a launggnm|_ggn1d_ detect an abnormality likely to‘be breast cancer? (CHEW ONE) 52 ___,Not at all confident (1) ___ Somewhat confident (2) ___ Quite confident.(3) .___ Extremely confident (4) 31' Early detection of breast cancer by a nammggrgn;would improve a woman’s chances of recovery? (CHECK ONE) 35 ___ Strongly Agree (1) _ 49"" (2) __ Disagree (3) _ Strongly Disa ree (4) ___ Don’t know (5 in. l. 2. 74 ms 10 _ _ Page 12 ' CM If the W showed no signs of breast cancer. how confident would you be that it is correct? (CHECK ONE) . fl ___ Not at all confident (l) ‘___ Souewhat confident (2) __ Quite confident (3) ___ Extrewely confident (i) The next series of questions ask you about’tha influence that others light have on your decisions or actions to seek or not to participate in breast cancer screening. How n;ny close friends of yours have been diagnosed with breast cancer in the past 5 years - iirite in the number 2 ' ' , 353 To the best of your knowledge, how did your friend(s) find out about the cancer?‘ (Chick bale} ' _ Don’t know (1) _ Accidentally found the lump (2) ___ Noticed something wrong by self breast examination (3) ___ Health care professional found it (i) : Sax-“2232274? ‘(oi 2:3,?"Exfiiifi'itiifil'2:1330m3°8§ Wcifl‘fioiiliifififii"fi‘flmilanfiflé"§§:} (CHECK on: FOR EACH) Breast Professional oxscussm: YES no $315175?- vss no W 53 5'5 W Jim: 71' TE 3'5 mm 74' 3? 73 ML '47 35 1? ML '56 31' ii 332?}, 35 a 3: HBCS Page 13 .l. Have any of the following persons b) ghtain clinical breast exam WLQBEACH TYPE OF E '75 IO _‘_ C30d5._l_ to: ai pgnfgrl Breast Self Exaninations: ADVISED: DoctorLi Breast . YES I no Professional unsun- YES NO YES ..liunss .Ellllr Fri nd Maker Other: |Specify 4. Have any of the following persons discoura Exaninations (BSE); b) obtainin screening? (CHECK ONE FOR EACH a Clinica CARD HAVE 1 smov 5 one _/_ _/_ _, 9-1 Acme? - . 3111M ination; or c) ghtain a Mammography screening? (CHECK ONE 3| 3| 3| 3| 3| 3| 3| 3| 8| 3| 3| 3| 2| 8| 3| “I "1' 3| N l 5. e-e 0.0““. U god you fron:. a) perforuing Breast Self Breast Exam; and c) obtaining a Mammography DISCOURASED: DDSIIF Breast YES NO mummmm Professional Buss YES YES flgrse mm! Erisnd m? Literature/ Mil Other: 5mm 3| 3| 3| 5| 3| 8| 8| 8| 3| 2| 8| 3| '32I 8| 8| “I H 3| 3| 2| “I 0| ”I CB HBCS Page 14 Hith regard to breast cancer screenin and advice of each of the following, breast examinations. and Mammography)? (CHECK ONE FOR EACH) '76 IO CAID"" practices, how important to you is the opinion i.e., Breast Self Examinations (BSE). clinical VERY SONEUHAT mum—MAMA!" NOT AI ALL IMPORTANT 3| 8| 8| 8| ) N e-fi persons (e.g.. Nancy Reagan, 3| Ann Jillian. How frequently are the following discussed among female employees with whom you work? SEVERAL TIMES ONCE A S - 10 TIMES (CHECK ONE FOR EACH) SELDOH 8| 3| 8| 3| How frequently do you INITIATE discussion of the following with others at work? (CHECK SEVERAL TIMES ONCE A S - 10 TIMES ONE FOR EACH) SELDON Nil 2| 8| 3| 7"7 HBCS IO .... Page 15 CM - .. CONCERNS I The following questions explore concerns women have about getting breast cancer. He want you to answer these questions in the way that you generally think about these issues.. Let us know your usual feelings. As compared with other women of your age, what do you think is the chances that you will develop breast cancer in the next five years? (CHECK ONE) :5 Much less than other women (1) Somewhat less than other women :2) About the same as other women ( ) Somewhat higher than other women (4) ' Much higher than other women (5) Hhat is the chance that someone like yourself will develop breast cancer sometime during your lifetime? (CHECK ONE) 5‘ Much less than other women (1) Somewhat less than other women (2) About the same as other women ( ) Somewhat higher than other women (4) Much higher than other women (5) do you think are the chances that any woman in the USA will have breast cancer some Hhat day? (CHECK ONE) _ 3! About 1 in S (l) About 1 in 10 2 About 1 in 25 3 AboutlinSO 4 Less than 1 in 50 (S) serious do you think the risk of breast cancer is for women in the 0.5.? §||||| Extremely Serious (1) Very Serious (2) Somewhat Serious 3} Not Very Serious 4 _ Not at All Serious (S) If you were to develop breast cancer, how probable do you think it is that it would have spread before it was discovered? (CHECK ONE) 37 _ Not at all probable (l) _ Somewhat probable (2) _ Very probable (3 __ Extremely probab e (4) __ Can’t Predict (S) "Who do you think .is more likely to get breast cancer? (CHECK ONE) 53 _ Homen under age SO 51) __ Homen over age 50 ( ) Age make no difference (3) Don’t know (4) 78 vaés ID __ PagelS CARD__ Could a woman have breast cancer without having any symptoms or feeling ill? (CHECK ONE) Yes 1) _ 53 No 5;) Don t know (3) If a woman didn't have any symptoms but was 50 years of age or .older, how often should she get a manogram? (CHECK ONE) 5'6 Every year (1) Every two years 32) _ Only when she ha a problem/symtom (3) Don’t know (4) If you do 11g}. notice anything unusual in your breasts. how sure can you be that you don’t have reast cancer? (CHECK ONE) 3T Not at all sure (1) _ Somewhat sure (2) Quite sure (3) _ Extremely sure (4) . Please indicate below how important you believe each of these are in mung breast cancer. Circle one number for each using the responses listed below: NOT IHPORTAN’T SMEHHAT VERY EXTREMEL AT ALL IMPORTANT IMPORTANT IMPORT a. Viruses l 2 3 4 _ 62 b. Stress l 2 3 4 _ 63 c. Diet 1 2 3 4 _ 64' d. Run down physically l 2 3 4 _ 65 e. Environmental chemicals 1 2 3 4 _ 66 f. family history of breast l 2 3 4 _ 67 cancer 3. Smoking 1 2 3 4 _ 68 . InJury to the breast 1 2 3 4 _ 69 ;- :r...*n~w..,.,...g.. . i : a : - ;° . r o o _ 1 babies fu term k. Breast- eedin l 2 3 4 _ 12 l. Exposure to t e sun 1 2 -3 4 __ 73 m. Natural hormone levels 1 2 3 4 _ 74 n. Oral contraceptives l 2 3 4 __ 7S 79 Page 17 IO____ 14 , CARD oz rumour HAVE 1 7 STUDY .4. e ‘ DATE _, J: J. _, 9-14 AGENCY_ IS This final series of questions asks for background information about you. includin {our loyment and occupation. He remind you that all the information you provi'd e wil he d in the strictest confidence and will not be linked to you as an individual. Hhat is your current employment status? (CHECK ONE) __-iiork full-time I T3 :Hork part- -time 2 :Volunteer (non-sa aried) (3) :Retired :On leave or disability 5 __ _ _Other (please specify) 6 17 18 How long have you been employed with your present company or organization? TE '2'0’ Please HRIILIN number of years employed: Please m the title of (your position: fi .27 Do you have health insurance? (Check- one) 5 _ YES (1) TE: THIS INFOMATIM IS BEING GATHERED IN ORDER TO PROVIDE DETAILED INFORHATI SARDING BREAST CANCER SCREENING COVERAGE. If YES, please W the name of your health insurance comany and group or contract code I (you wil ike y find these numbers on your health insurance card): no (2) Name of Insurance Comany 54' 5S GrouplCode Rafi-235357535357 Is this insurance coverage provided by: (CHECK ALL THAT APPLY) Your employer _ 35 Your spouse _ 36 _Other family member’ s employer _ 37 _Self pay _ 38 _ Medicaid __ 39 _ Medicare _ 4O __ Not insured _ 41 Other (please specify: . | .. 10. II 80 vets IO __ Page 10 ‘ CARD " -p Does your health insurance pay for scanning physical breast exams by health care professionals? (CHECK ONE) YES (I) __ N0 (2) Don’t Know (3) Vhat does your health insurance pay for screening ma-ograms? (CHECK ALL THAT 'APPLY) ' Routine Mauaography. when no known problem exists (I) 45 __ Onl for Referra Nanographies. to Rule out suspected abnormality (2) 4S _ Fol ow-up for Knpwn Abnormalities (3) 47 Don’t Know (4) 4B Hhat is you race or ethnic background? (CHECK ONE) _ iihite 31 I? Black 2 Hispan c (3) _ American ndian/Alaskan native (4) _ Chinese (5) ' __ Japanese (6) _ Fi° ipino Hawaiian, Korean, Vietnamese (7) _ Other (P ease specify: i (B) .' iihat is your marital status? Are you: (CHECK ME) _ Single . never married (I) 50 __ Hidowed (2) __ Married or living as married (3) __ Separated (4) _ Divorced £5) ' __ OTHER (SP C FY: i (6) iihat is the highest grade (or level) of education that you completed? (CHECK ONE) Less than Bth grade (I) 51 Bth grade to 1 th grade (2) ._____ High school graduate/BED (3) Post high school. trade or technical school (4) One to three years of college (5) College graduate (6) Graduate and/or professional school (1) Hhich category best describes your total combined mm income hm (from all adult sources living in your household)? (CHECK ONE -- OPTIONAL) _ Less than ”5.000 (I) . 52 __ SZI.000-S25.000 _ 531,000-335,000 S36,000-S40.000 __ “LOGO-$45,000 __ 846,000-350,000 More than $50,000 (9) Thank you again for your time and interest in completing these questions. CNOM-“N 81. vac: IO __ Page I! CARE Now that you have completed this questionnaire. please place it in the convenient. self- addressed stamped envelope and drop it in the mail. He appreciate you responding to “his so promptly. He will want to include you in the second questionnaire. which will follow in approximately 6 months. 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.youl Please return within two weeks /rs 5/11/90 APPENDIX B 82 APPENDIX B MICHIGAN STATE u N I v E R SIT Y Haroh 28, 1995 To: Rome Rome 2593 N. Abbe Cosine. a: 48619 RE: IRBI: 5-151 TITLE! DO ENPLOYED "CHEN A088 40-65 WHO HAVE HAD ORE flhflHOORAN BUT FAILED TO AC UIRE SUBS! DENT HAHHOGRAHS ACCORDING TO AC GUIDELINE IDENTIFY SELECTED BARRIERS? REVISION REQUESTED! "IA CATEGORY! 1" APPROVAL DATE! 03 24,98 The Univermity Committee on Reeeerch Involving Human 8ub2ectm'(0¢fl1fi8) review of thim project im complete. I an pleamed to adv me that the rightm and welfare of the human mubjecte appear to be adequately protected and methodm to obtain informed c1 oneent are appropriate. herefore, the UCRIHS approved thim project including any revimion limted above. IEREHALI UCRIHS approval im valid for one calendar year, beginning with the approval date mhown above. Invemtigatorm planning to continue a project be ond one year muet uae the green renewal form (enclosed with tie original approval letter or when a pro ect ie renewed) to meek u ate certification. Therm im a max mum of four much expedite renewalm meible. Invemtigatorm wiehing to continue a roject beyond the time need to mubmit it again or complete rev ew. RBVIBIONII UCRIHS mumt review an! changem in procedurem involving human mubjectm. rior to in tiation of t e change. If thim im done at the time o renewal, please use the green renewal form. To revime an np roved protocol at ann 0 her time during the year mend your wr tten requeet to the CRIHS Cha’r, requeeting revised :pproval and referencing the project'm the P and title. Include n {our requeet a deecr tion of the change and an: revimed inm rumentm, conment formm or mdvertimementm that r e applicable. rmoenrwe/ CHANGED! should either of the followin arise during the oourme of the work, inveeti etorm muet noti I a UCRIHS romptlys ll) problemm unexpected e de effectm comp ntm, e c. nvo v ng uman i i l GTSEG= mubjectm or 25 chengem in the reeearch environment or new RESEARCH information n iceting greater riek to the human mub ectm than ex m e u en e pro oco wam prev oua y rev e an approve . AND i t d h th t l i l i wed d GRADUATE ,, we can be of an future hel leame do not hemitate to contact um STUDIES at (811)383-2100 oz' I'M (517)335-I111. iiaiveniig Cemmiiiee em . ~ Research involving 3‘“°.r. flunmtflwnh (oceans) . m”‘““”" a id 3. w i ht ‘ . mammalian. uci'una chair-9 ' mm W .I .- ‘ . ' . «mow Dim”- . ,_ . _ sun-35521” cos Barbara A. Given FAX: mun-mi 83 MICHIGAN STA ' UNIVERSITY uumnsm cowumu o'er RESEARCH momma um umuvo . macaw . eases-mt Hum SUBJECT! (poems: no em mm. in?) ass-ma August 7. l990 IRB# 89-367 Barbara Given. R.N., PhD. Family Care Study 8100 Clinical Center Dear Dr. Given: RE: “ASSESSMENT OF BARRIERS AND FACILITATORS TO SCREENING FOR BREAST CANCERuA WORKSITE APPROACH IRB# 89—367' UCRIHS' review of the above referenced prolect has now been completed. i am pleased to advise that the rights and welfare of the human sublects appear to be adequately protected and the Committee. therefore. approved this project at its meeting on August 6, l990. You are reminded that UCRIHS approval is valid for one calendar year. If you plan to continue this project beyond one year. please make provisions for obtaining appropriate UCRIHS approval one month prlor to August 6. l99l. Any changes in procedures involving human subjects must be reviewed by the UCRIHS prior to initiation of the change. UCRIHS must also be notified promptly oi any problems (unexpected side effects. complaints, etc.) involving human sublects during the course of the work. Thank you for bringing this project to our attention. If we can be oi any future help. please do not hesitate to let us know. . Hudzlk. PhD. hair, UCRIHS JKH/sar HS U in mm A/flneae'ee Anion/Equal Opportunity Inna-time LIST OF REFERENCES 84 LIST OF REFERENCES American Cancer Society. (1990) 1989 Survey of physician’s attitudes and practices in early cancer detection. CA-A Cancer Journal for Clinicians fl_0_, 77-101. American Cancer Society. (1995) Cancer Facts and Figures-1995. New York: American Cancer Society. Bandura, A. (1986). Social Foundations of Thought and Action: A Social Cognitive Theory. Englewood Cliffs, N J: Prentice Hall. Bassett, L. W., Manjikian, V., & Gold, R. H. (1990). Mammography and breast cancer screening. Surgical Clinics of North America, 70, 7 7 5-7 99. Bastini, R., Marcus, A. C., & Hollatz-Brown, A. (1991). Screening mammography rates and barriers to use: A Los Angeles County survey. Preventive Medicine, 20, 350-363. Champion, V. L. (1991).The relationship of selected variables to breast cancer detection behaviors in women 35 and older. Oncology Nursing Forum, _lfi, 733-739. Champion, V.L. (1992). Compliance with guidelines for mammography screening. Cancer Detection agl Prevention. 16. 253-258. Culver, J ., & Alexander, E. J. (1989). Implementing the American Cancer Society breast cancer awareness program in the workplace. American Association of Occungionral Health Nurses Journ_al. 37. 166-170. Dodd, G. D. (1993). screening for breast cancer. Cancer. 7;. 1038- 1042. Eley, J. W. (1989). Analyzing costs and benefits of mammography screening in the workplace. American Association of Occupational Nurses Journal 37 171-177. 85 Given, B., Given, C.W., & Dirnitrov, N. (1991). Assessment of barriers and facilitators to screenmgfor breast cancer--a worksite approach. 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