Breast Health Education for Working Women in Appalachia: Insights From Focus Group Research Sally J.McMillan, PhD, Eric Haley, PhD, Paige Zollman-Huggler, BS, Elizabeth Johnson Avery, PhD, Melissa G.Winchenbach, MBA, and John L.Bell, MD Background: This study seeks to understand rural working women,their knowledge of health systems,and how breast health issues fit into their lives. A key aim of this study was to identify regionally and culturally specific factors that influence how these women approach breast health and to identify ways that more positive breast health behaviors can be achieved. Methods: Five focus groups (N = 42) were conducted among women at sites where the Breast Health Outreach Program (BHOP) had been conducted. Focus groups were composed of 7 to 10 women who were in about the same age cohort. Results:Women provided multiple insights about their attitudes and behaviors related to breast heath concerns. Analysis of the data revealed that many of the comments clustered around two types of “systems”in these women’s lives: the professional health care system and personal community systems. The BHOP provides a bridge between these two systems and seems to facilitate positive actions. Workplace health professionals also provide a bridge between professional and personal systems. Conclusions: Women exhibited the general distrust of the medical system that the literature indicates is often associated with Appalachian culture. However, this study found that distrust can be overcome with education programs that meet women where they live and work. Such programs are most likely to be successful when the materials and methods are sensitive to Appalachian culture and when medical services are brought into the community. Introduction area with easy access to mammography facilities, participation in the decision Studies have shown that early detection about screening,access to regular health through screening mammograms and care, health motivation, feelings of sus- clinical breast examinations can reduce ceptibility to the disease,discussions with breast cancer mortality.1 Breast self- friends,strong social networks and social examination (BSE) is more effective support,self-efficacy,higher income and among women trained in the proce- education,marital status (married women dure.2 Rural women typically are less reported more positive behaviors than educated than the general population single women), smaller families, Cau- about the importance of early detection, casian race rather than a member of a but several studies have found positive racial minority, and increased age.3-12 effects of educational programs targeted Taken together,these factors tend to sug- to women in these underserved areas.3,4 gest that women living in rural areas may Factors that seem to have a positive be at higher risk because of their overall influence on breast health behaviors lower access to health care and generally include perceived benefits of BSE, an lower socioeconomic status. understanding that mammography is a Women in rural Appalachia are the cancer screening tool, residence in an primary focus of this study.In general, July 2007, Vol.14, No.3 Cancer Control 265 Appalachian people have been found to have inade- factors that influence how these women approach quate knowledge about cancer and the importance of breast health and to identify ways that more positive screening tests.13 Some patients in this region have also breast health behaviors can be achieved. This is an been found to regard illness fatalistically and use reli- important group to study because Tennessee ranks fifth gious faith to emotionally sustain themselves.14 highest among the 50 states and Washington, DC, in Appalachia, a region federally defined by the breast cancer mortality,with a mortality rate for breast Appalachian Regional Act of 1965,contains 399 coun- cancer deaths per 100,000 persons of 27.7 compared ties in portions of 13 states within the United States. with 25.02 nationally.20 Appalachia has a history of economic instability,most Most study participants work in industrial jobs in commonly associated with outsider exploitation of its the Appalachian region of Tennessee. Recent census data resources.15 reveal that in East Tennessee,24% to 41% of residents While Appalachia is an underserved and under- work in industrial jobs (manufacturing of durable and studied area,some studies have examined cancer edu- nondurable goods),and approximately half of the labor cation in this area. Sortet and Banks16 examined the force is female. According to the Department of Labor relationship between health beliefs of rural Appalachi- and Workforce Development,the median salary for pro- an women and the practice of BSE.Women who report- duction occupations in this area is $10.99 US per hour ed more confidence in doing BSE and perceived more or $21,100 gross annual income for full-time workers. benefits from doing BSE were more likely to perform Low-wage workers such as these are medically under- BSE regularly. Amonkar and Madhavan17 found that served because of concern about expense,lack of insur- Appalachian women most likely to be in compliance ance (many of these women are part-time employees), with cancer screening recommendations are those difficulty accessing clinical services,and poor education. who have health insurance,reside in urban areas,have Health education programs supported by work- better health (as self-reported),and are more educated. places have been successful in reaching large popula- The health beliefs of Appalachians are often differ- tions and changing intentions to perform breast health ent from those of mainstream Americans. By contrast, behaviors.21 Workplace programs are also most effec- most health professionals share values of the academic tive,in terms of both outcomes and cost of delivery, cultures that shape their professions.18 This difference when they take into consideration the cultural back- in value systems can lead to misunderstandings,stereo- ground of employees.22 Research has shown group typing,and even indifference.16 A basic mistrust of the education is a viable way to bring new advances in health care system among many Appalachian residents breast cancer prevention to women.23 often leads to delay in seeking health care.19 Our study focused on a specific group of Appalachian women — those who live and work in Background rural eastern Tennessee. A key goal was to gain a better understanding of these women,their attitudes toward This study focuses on a grant-funded educational pro- the health care system,and their responses to a breast gram operated out of a major research hospital in the health education program targeted to rural working region. The Breast Health Outreach Program (BHOP) women in this region. In particular,a key aim of this began in 1996,taking 1-hour educational classes and a study was to identify regionally and culturally specific mobile mammography unit to Appalachian East Ten- nessee. Educational classes are designed to provide comprehensive information on the importance of early From the College of Communication and Information (SJM, EH, detection and diagnosis of breast cancer, ways to EJA),the Breast Health Outreach Program (PZ-H,MGW),and the reduce controllable risks,and instructions on how to Surgical Oncology Program (JLB) at the University of Tennessee, Knoxville,Tennessee. do BSE. Reduced-cost mammography services are pro- Submitted June 20,2006; accepted October 2,2006. vided by a mobile unit. Women 40 years of age and Address correspondence to Sally J.McMillan,PhD,College of Com- older are offered free clinical breast examinations by munication and Information, University of Tennessee, 302 Com- volunteer professional health care providers and munications-University Extension Building, Knoxville,TN 37996. reduced-cost screening mammography. E-mail: [email protected] In 2000,the BHOP piloted a program that targeted This study was funded by the National Cancer Institute through a grant coordinated by the Appalachian Cancer Network. industries, a major place of employment for low- No significant relationship exists between the authors and the com- income,medically underserved women. The program panies/organizations whose products or services may be refer- now serves 25 counties located in rural Appalachian enced in this article. East Tennessee. Since inception,the BHOP has educat- The editor of Cancer Control, John Horton, MB, ChB, FACP, has ed more than 10,000 rural Appalachian women and nothing to disclose. screened a similar number of women on the mobile Abbreviations used in this paper: BHOP = Breast Health Outreach Program,BSE = breast self-examination. unit. The BHOP has established a relationship with 266 Cancer Control July 2007, Vol.14, No.3 more than 50 industries throughout remote and rural between the BHOP and the organizations where it has counties to provide breast health education and screen- done presentations was reflected in this high level of ing mammography. willingness to participate in the focus groups. Five focus Beyond learning about women’s evaluation of the groups were conducted;three among women who had BHOP,this study also aimed to understand rural work- attended BHOP education sessions and two among ing women,their knowledge of the rural health system, those who had not attended a session,even though it and their perceptions of breast health, as well as to was available at their workplace. In total,42 women par- learn how breast health issues fit into the broad scope ticipated in these focus groups (27 who had attended a of their lives. This is important for cancer education BHOP program and 15 who had not). Focus group par- programs that focus on underserved populations. The ticipants ranged in age from 31 to 74 years (mean age study attempted to let women speak in their own 50.4). Location was a factor that brought women of sim- words to provide depth of insight into these issues. ilar age groups together. For example,one session was held in a location that attracted primarily retired women,while another was in an industry that had a high Materials and Methods number of younger female employees. All participants received an incentive of $20 US for Design being part of the group. Participants were given a clear Because the study sought depth of understanding of an statement of the research purpose,and they provided underserved population,a qualitative perspective was their informed consent to take part in the focus group identified as the best approach.This study not only uti- and to have the entire session tape-recorded. lized qualitative methodology,but also approached the research phenomenon from a qualitative paradigmatic Procedures perspective. Two researchers conducted focus groups using a semi- The basic assumptions of a qualitative paradigmatic structured guide to ensure that both facilitators perspective drive the methodology and evaluative stan- explored similar topics. Key topics were personal his- dards of the study. Ontologically,the qualitative para- tory and the health care environment,personal behav- digm assumes that realities are multiple and socially iors related to breast health, personal responses to constructed. People are active meaning makers,and the breast health issues such as risks and reinforcements, realities of any phenomenon are created by those who attitudes and responses toward breast health education live the experience (such as breast health).24 As such, programs,and support systems. In addition to leading the research method should allow participants to freely discussions, facilitators also collected some written express their “realities”of breast health. For this study, responses from participants. These included personal the qualitative method of focus groups was employed. responses to word associations,drawings that allowed Focus groups are an ideal method for several rea- participants to express their feelings,and demographic sons. First,focus groups have been successfully used in data. Copies of the focus group discussion guide are previous studies to learn more about attitudes and available on request from the first author. beliefs related to cancer.25-27 Second,focus group inter- Following each focus group, the full session was views are a culturally appropriate method for learning transcribed. Researchers reviewed each transcription about the beliefs and health behaviors of those who are prior to conducting additional focus groups. Research- not part of the mainstream culture. A study that com- ers also examined written material and drawings made pared focus groups with survey research found that the by focus group participants. Before conducting the focus groups were more suited to reproducing com- next focus group,the semi-structured guide was slight- munity attitudes and patterns of practice and explain- ly modified as needed to probe for additional insights ing the reasons behind survey findings.28 Focus groups into rural Appalachian women and their attitudes and allow participants to set their own agenda for discus- responses toward breast health issues. sion and are user-centered,thus aligning with the onto- All data were analyzed by a process of analytic logical paradigmatic assumption identified above.26 induction. Analytic induction consists of scanning the transcriptions and other materials for themes and cate- Recruitment gories,developing a working schema from examination Participants were recruited from areas in which the of initial cases,and then modifying and refining it on the BHOP had conducted training sessions in the recent basis of subsequent cases.29 Negative instances that do past.Women were recruited based on past attendance at not fit the initial constructs are sought to expand,adapt, the BHOP sessions. Women at those locations were sim- or restrict the original construction.The emphasis is on ply invited to attend a research session related to the category construction rather than enumeration. As BHOP.Without exception,sessions filled with volunteers such,results of the study focus on description of the who came at the time requested. The close relationship themes and variations within the emergent categories July 2007, Vol.14, No.3 Cancer Control 267 instead of on documentation of the number of instances Perceptions of Women’s Health Care Issues of each idea as might be the case in a content analysis. Overall,women who participated in this study felt that Since the purpose of a paradigmatically qualitative study women’s health issues were not taken as seriously by is to bring forth the various realities of participants,the doctors as were those of men. Women reported their role of theory in a paradigmatically qualitative study is doctors telling them that symptoms were “in their heads.” to enlighten the emergent findings of the study rather In explaining why this might be,participants often cited than provide an a priori theoretical explanation through that their doctors could not understand women’s prob- which to frame the analysis. lems because most of their doctors were men. To answer the question of how many interviews are enough, the redundancy criterion was applied.30 “Let me ask you this,would a man know exact- That is, the number of interviews conducted was ly how you feel if you had cramps?” expanded until clear patterns in the participants’con- struction of the Appalachian breast health experience “See,I’m paranoid on a man [doctor] because I had emerged and been confirmed. By the end of the had one [male doctor] that gave me the heebie fifth focus group,significant redundancy in responses geebies like anything.” was noted, thus indicating that no additional focus groups were needed.31 “I think women are more compassionate and Finally, in reporting the findings, passages of take more time. I have a female gynecologist respondents’ words and descriptions are used. Such and she’ll stay there as long as you have any low-inference descriptors constitute the principal evi- questions.” dence for assessing the validity of the report and give the reader a basis for accepting,rejecting,or modifying Yet, many women said that they prefer to hear an investigator’s conclusions.32 about health issues from men. “I’m okay with a doctor touching my breasts. Results I just stare at the holes in the ceiling while he is doing it. I’d rather have a male doctor. I just A key theme that emerged from these focus groups was don’t like a woman.” that women see two distinct and separate “systems” related to their health. The first is the “professional Perceptions of Local Health Care Services health system”as embodied in doctors,hospitals,clin- Most of the rural women in this study did not hold ics,and most health professionals. Various diseases and their local health care services in high esteem. Many felt conditions also fit in this system. The second is the that they must travel to a larger city to receive quality “personal community system” that includes family, health care. friends,coworkers,and others who have a strong influ- ence on health. As further discussed below,the profes- “Rural counties have a difficult time getting good sional health system is seen as largely suspect,while the doctors. The poorer counties do not attract the personal community system is held in relatively high better doctors,and the hospitals are not staffed.” esteem. The BHOP seems to be a kind of “bridge”that, often in conjunction with workplace health programs, “My doctor is always in a hurry.” is seen as having personal value despite the profession- al orientation of the BHOP. “I think regardless if you have to go to the hos- The Figure provides a brief overview of the rela- pital you better have a family member that’s tionships among professional,personal,and bridge sys- going to be there and concerned with your care, tems. In this Results section,representative quotes are or you will be lost in the cracks or they will provided. Verbatim quotes are used to allow these have you on medicine you don’t need to be on.” women’s voices to be heard. In the Discussion section, the Figure is explained in more detail based on insights “If you’re dealing with a complicated medical that emerged from the focus groups. case and you send it to a local facility, you could be taking your life into your own hands.” The Professional Health System Three key themes were related to the professional For many women,health care is viewed as a con- health system as revealed by women in this study: per- frontational rather than a cooperative experience. Some ceptions of women’s health care issues in general,per- women expressed the belief that as women age, the ceptions of local health care services,and perceptions issues are confounded. One woman summarized the of breast cancer. sentiment,“The older you are,the worse they treat you.” 268 Cancer Control July 2007, Vol.14, No.3 The presence of medical staff at workplaces helps need to take a positive approach to breast health. to offset the problems reported above: These responses often seemed to be embedded in a deeply held religious faith. “The doctor that saw me [at a local hospital] treated me like a speck of dirt. He told me I “Cancer is a very scary word, but it’s treatable. was having muscle spasms and to go home I feel like it’s treatable,and I think that with a and rest.They didn’t take X-rays,they didn’t do positive attitude and you know having faith. any tests. He touched me like I was diseased, Believing that you’re going to get well is real- and I know why — because he found out I was ly important and it would scare me to death on antidepressant medication. And from that if I had it, but I would feel like I could get point on,I was nothing. I got hold of [the plant through it.” nurse] and she sent me to the plant doctor. My rib was dislocated from my spine.” “You know what kills a lot of people with cancer, they’re scared. They lay down and give up.You Perceptions of Breast Cancer fight it, you got to fight it, and you’ve got to Perceptions of breast cancer were revealed through have faith in the good Lord.” drawings the participants made of women with and without breast cancer. Those women with breast can- cer were drawn as sad,scared,and flat-chested.Women The Personal Community System without breast cancer were drawn as happy, secure, and buxom. When explaining their drawings,women Women in the study identified several different themes said that breast cancer is scary but not necessarily a related to their personal communities that influenced death sentence. For example, one woman described their attitudes and behaviors concerning breast health. her drawing: “She’s smiling,but she ain’t got no hair In particular,they discussed interpersonal influences, because she’s been to chemo,but she’s smiling ’cause gender issues,and generational differences. she knows she’s going to live.”Despite knowledge of treatment options short of mastectomy, women per- Interpersonal Influences ceived those with breast cancer as having lost their Many women reported that interpersonal communica- breasts. Women also reported feeling a lack of control. tion channels (friends, family, and coworkers) were important sources of information and motivation related “It’s just like a curse on the world that was set to health issues. Frequently,those who reported positive forth from Adam and Eve, that’s just one of breast health behaviors indicated that the experiences of them. We’re living here, we’re susceptible. You family members were a strong motivating factor. don’t have to drink or smoke.” “My sister had to have lumps taken out of her “Knowing you’re at risk doesn’t give you a lot breast so I think about that usually right of control. I guess that’s why you should do the before I take a shower and do my exam.” self-breast exams, you do the mammograms, you know your family history and at least you “Well, my grandmother had breast cancer … can have a little control in it by doing those and had a breast removed, and my mother’s few things.” had a cyst,which I’ve had,I’ve got cysts … and uh,you know it’s scary. I was young when my “I just don’t want to deal with the ramifica- grandmother went through it and it’s just some- tions. If I’m gonna pass, I’m gonna pass and thing I wanted to keep an eye on. It is scary.” when the time comes I’m ready to drop and don’t want to stress out between now and “Yeah,but if you’re ever faced with it and some- then. How many stories have we heard where one in your family has it, the fear will knock early detection didn’t do anything, and I just you back to it [doing self exams].” don’t want to stress over it.” For other women who did not have family histories However,fatalistic views seemed to be contrary to of breast cancer,the experiences of friends and acquain- what most women in the study believed.Those women tances were important. who seemed more motivated to actively participate in breast health activities used phrases such as,“I like “Well,to me finding out a friend has it because being around,”and “I think about my kids,”which focus that stays on my mind all the time. That re- on reasons to live. Several respondents focused on the minds me to do my self exam.” July 2007, Vol.14, No.3 Cancer Control 269 “’Cause it just seems like that if there was some- “The men that I’m around are very open to dis- body close to me like my sister or best friend or cussing pretty much anything, and seems like something, that would make me think, ‘You society has opened up a whole lot more than know,I need to do this.’” what it was 15 or 20 years ago.” Participants also talked frequently about the need “I had three friends who died,and each one of for support systems to help them better understand them,their husbands were the ones who found and cope with women’s health issues. At several of the lumps.” the focus group sites,one or two women had become either formal or informal leaders on health topics. In Several of the women suggested that education some cases an occupational nurse encouraged programs should focus not only on women but also women to sign up for classes and mobile mammogra- on men. phy. However,perhaps some of the more interesting stories were of women who were breast cancer sur- “I wish they’d bring more men into the aware- vivors who became informal sources of information ness of it, and trying to get it out because I for their colleagues. think a lot of people listen to men better than they do women.” “I go to Karen [a coworker who is a breast can- cer survivor], and I ask Karen a lot of ques- “I mean just like always in the past,men have tions … because I feel like I can depend on her always been the leaders. So sometimes we still because she’s there.” revert to that,you know,if a woman is telling you one thing and the man is standing up “I have good friends who would stand by me there,you may have a tendency to listen to the and even like my supervisors and people here man because a lot of times,he’s supposed to be at work.We’ve had three or four people here at the leader.” work who’ve had situations with cancer and so I know if anything like that were to happen, “I think if more men did talk about it publicly, I’d have people here to support me.” the other men would listen, and then they’re going to be more concerned with their spouse’s Gender Issues health, their friends, their sisters, their moth- In discussing sources of support,these women’s con- ers. You know, I think it would just help the versations frequently turned to men in their lives. whole issue a lot.” Women in this study generally felt men want to be sup- portive but do not have necessary information to cope However,even though they thought men should be with women’s breast health problems. more educated and become more involved in breast health issues,they did not want men to be in the same “I think some men are more scared than their training sessions as women. wives are,and they won’t accept it. There’s a lot of them like that. And they’ll say, ‘Well, “Maybe if they had a class just for men, which you’ve got to have it [mammogram] done’ could educate them,without it being in a co-ed but they just don’t understand what you’re setting,you know where a woman wouldn’t feel going through. It’s not their fault really, as open to discuss certain things.” ’cause you don’t know what you’re going to go through.” Generational Differences Some women in the study felt that breast health was a “They just don’t know,they’re not ignorant,but topic that their mothers were uncomfortable or unwill- they were raised, you know, women take care ing to discuss with them. However,these women felt of theirself, men take care of theirself, I mean that they owed it to their daughters to have conversa- they just don’t understand the times that it’s tions about breast health.The women attributed this to not like it was way back when …” overall changes in attitudes toward women’s health issues; that is,women’s health issues are not taboo as Not all women saw men as uninformed. In fact, they were in the past. several pointed out that men are more understanding today than they once were. Others noted that men “Growing up,me and my mother we got along can actually be partners in helping to screen for really good and we always have, but as it breast cancer. comes to stuff like that [breast health],it’s just 270 Cancer Control July 2007, Vol.14, No.3 something that was never brought up or noth- Women who have attended the BHOP sessions ing was ever said. I don’t know if it was em- reported that personal stories told by the women who barrassing to her because most of my stuff experienced breast cancer were powerful and motivat- that I found out was always at school, you ing. Hearing stories of other people’s personal experi- know,from my friends. I have three girls,and ence with breast health problems was cited throughout I decided that I’d always be open with them the focus groups as being highly motivating in getting and they could ask me anything. That’s some- women to take breast health seriously. As one woman thing I feel is important to do is make their stated,“Seems like that sticks with me,you know,when daughters really know.” I hear of other people.” Many women talked about how important it was to Good mother-daughter communications about learn to do BSEs correctly. Some saw that as an activity breast health can also be of aid to the mother. As one that should begin early in a girl’s life and saw medical participant stated,“My daughter calls me once or twice professionals as core to the process of learning to per- a month,‘Mother,it’s time to check your breasts.’” form BSEs correctly. “My daughter’s pediatrician told her how to do Breast Health Outreach Program a breast exam when she was 13. He said just about the time they start their monthly cycles, Women were asked to discuss specific aspects of cancer start teaching them about getting a normal education training programs that were particularly useful routine. That way they know early what’s to them. This section summarizes women’s responses to right and what’s not.” training materials and methods,reminders,mobile mam- mography, and general responses to a rural workplace Not all women had positive experiences with med- cancer education program ical professionals. Training Materials and Methods “I don’t reckon the doctor tells you how to do it.” Participants reviewed materials that are used in the BHOP training program. They were asked to comment on what “I go to a doctor, every year, and it’s like, they they found to be particularly useful and helpful. do,you know,a breast exam,but that they like poke at you everywhere but you didn’t under- “Most of those papers like that, you know, I stand why. He never explained a lot of things, would probably flip through it, but with the about, you know that we learned from read- one that shows how to do the breast examina- ing your packet,you know from the class.” tions,I would probably pay more attention to it because I hate to read.” Many women reported that prior to attending a BHOP class,they were uncertain about how to properly The video used by the BHOP in the educational conduct a BSE. sessions was rated as very important. “I always wonder if I’m doing something wrong. “That video was a real good informing class. Whenever I’m feeling this breast,am I supposed It shows you how to lay down and check it. to have this arm up when I feel, you know, And I thought, I was laying in bed one night when I’m examining this side?” watching TV,and I said,‘I’m just going to start doing that…’” Reminders Women also reported the need for reminder systems. BHOP attendees also reported learning from the Many pointed to a local television public service pro- model used in training sessions: gram that reminded women to do a BSE each month. Others praised the shower hanger reminders distrib- “I liked the breasts where you were trying to uted by the BHOP. find the lump ’cause I didn’t realize how hard they were to find. I didn’t know how deep you “This [the shower hanger reminder] is the had to push to find the lump until I had that handiest little thing I’ve ever got a hold of. class the first time, ’cause I thought it would I hang it on the things behind my shower- just be real easy to find one, and when I had head in the bathroom in the shower and it’s that education,I realized that you’ve really got hanging there. And it helps me to think of it to mash to find them.” [breast self-exams].That little thing that hangs July 2007, Vol.14, No.3 Cancer Control 271 around the showerhead has done me more “They [the BHOP presenters] are both so opti- good than anything.” mistic and enthusiastic about it, you know, just to watch them you think, man, I really However,many women reported that it was diffi- need to make sure I’m doing this [BSE] every cult to remember to perform BSEs. month,you know.” “I think it’s just getting tied up with children “I found a lump under my arm that I found and not giving myself the time to do things from doing the video. I didn’t know to check that I need to do. I just forget to do it.” the back,and I checked under the back of my arm and I thought there’s a knot under there.” Reminders were also important for annual clini- cal examinations and mammograms. Women report- The BHOP is a welcomed resource for the women ed that receiving a notice from a hospital or clinic or who have attended a BHOP session. Compared to doc- having the mobile mammography unit come to their tors and hospitals,which women spoke about as con- workplace was the best way to remember those frontational experiences,the BHOP was described as a annual checkups. cooperative and educational experience by women in the study. Clearly,women perceive the need for BHOP Mobile Mammography and view it as a useful,friendly,and caring information For women in the study without health insurance or and health care resource. who do not qualify for TennCare [Tennessee’s program for serving the Medicare-eligible population], mobile mammography is often the only opportunity to have a Discussion breast checkup. The Figure illustrates the basic relationship among the “In all honesty, had the mammogram vehicle professional health system, the personal community not come over there and [a staff member] put system,and the BHOP as defined by the women in this my name down and said to do it, I probably study. At the top of the Figure are the two “systems” still wouldn’t have had one.” identified by the women. Clearly,they do not overlap. In fact,in the eyes of these women,the professional sys- The above quote also shows the importance of tem does not seem to have direct relevance to their prompting by friends or opinion leaders within the personal lives. At the bottom of the Figure are two cir- community. While many participants associated dis- cles indicating two basic types of behaviors — those comfort,fear,and dread with mammograms,some par- that require a professional and those that are a woman’s ticipants suggested looking at mammograms in a more personal responsibility. The BHOP sits in the middle of motivating light: the Figure as a type of “bridge”system. The two-way arrow between the BHOP and the Personal Communi- “I try to make the good out of it [mammograms]. ty System shows the strong two-way communication They might find something I miss. I don’t look that links the BHOP to the women it serves. at it as much as something that I dread — it’s The +/– markings represent insights that women something that may find something I need to provided about professional,personal,and bridge sys- know. It’s a help to me,really.” tems and behaviors. For example,women who have family members with cancer are more likely to engage in positive breast health behaviors. By contrast,most Response to Rural Workplace Education women reported that their mothers had little influence over their own breast health behaviors. Also,women Both those who had attended a BHOP session and those were mixed in their response to how important the who had not were asked to give their impressions about men in their lives were in influencing breast health the BHOP. One nonparticipant summarized the rural behaviors. Most of the indicators in the professional workplace education program as follows: health care system are negative. However,participants in the study saw the BHOP as bringing credible infor- “Somebody cares enough to go out there and mation from the professional system into the realm of tell you what to do. So that’s how I see them. women’s daily lives. They perceived strong two-way They care about women.” communication between the BHOP and the women whom the program serves. Women who had attended a BHOP class thought the One explanation for this finding is that incorporat- experience was useful. ing culture into health information may significantly 272 Cancer Control July 2007, Vol.14, No.3 enhance adherence to the pro-health messages Unfortunately, audience segmentation in health advanced therein,a contention widely accepted by both campaign design has historically relatively ignored cul- practitioners and health communication researchers.33,34 ture by substituting it with race or ethnicity.33 Thus, Health intervention researchers often adapt two strate- programs such as BHOP might serve as exemplars to gies to tapping into the underlying assumptions and health intervention researchers and practitioners seek- traits of a culture: “constituent-involving”and “sociocul- ing to incorporate culture into health communication. tural.”35 According to Kreuter and Haughton,33 con- Given the depth of the data provided in this study,it stituent-involving approaches draw on the experience of provides an interesting point-of-entry for future group members “indigenous to the culture [who] can research to continue to build and evaluate models of help provide insight into values,norms,and meanings health communication with culturally targeted that are not always observable to an outsider.” approaches such as the BHOP. Given that the BHOP serves 25 rural Appalachian Workplace health professionals are also important. East Tennessee counties, has educated more than Occupational nurses are often the primary contact for 10,000 rural Appalachians,and is present in 50 indus- bringing the BHOP into the workplace. Two-way com- tries in Appalachia, the culture of these areas is munication between these nurses and working women inevitably and increasingly interwoven in its practice also seems to be strong. Nurses are able to help and relationships with its target public. Because the women make contact with plant doctors when needed BHOP is considered to facilitate a strong form of two- to supplement the rural health care system, but the way communication,establishing a sender-receiver dia- workplace health professionals have relatively little logue that results in mutual adaptation and change,it is direct effect on breast health behaviors. a constituent-involving approach to breast health cam- While the primary focus of the current study was paigns.With its incorporation of values and norms spe- on gaining depth of insight into the attitudes and cific to this region into its communication,the BHOP beliefs of a particular population,the findings also pro- might create a critical bridge between professional and vide some insights into behaviors. The red arrows con- personal systems by intertwining elements of personal necting the professional and personal systems in the culture into information traditionally,and perhaps inef- Figure with behaviors suggest relatively weak relation- fectively,delivered by health professionals. ships.Without the BHOP,women do get minimal breast health services from the professional system,and there are some weak linkages between the personal system and personal behaviors with friends, coworkers, and Professional Personal Health System Community System others sometimes having direct influence on personal (cid:129) Women’s health care (–) (cid:129) Family with cancer (+) behaviors. However,as illustrated by the black arrows (cid:129) Rural health care (–) (cid:129) Women friends (+) (cid:129) Breast cancer (+/–) (cid:129) Women coworkers (+) connecting the BHOP to positive behaviors,this bridge (cid:129) Men in their lives (+/–) system strengthens the likelihood of both personal (cid:129) Mothers (–) behaviors and behaviors requiring the services of a pro- fessional.The strong two-way communication between Workplace Health the BHOP and the women it serves helps to strengthen Professional and channel the influence of the personal community system. The BHOP also brings professional values and services to Appalachia women. Even though the women did identify some potential negatives in the delivery of BHOP (cid:129) Materials & methods (+/–) the education program,there is strong evidence that the (cid:129) Reminders (+/–) BHOP is continually adapting its materials and methods (cid:129) Mammography (+/–) (cid:129) Workplace education (+/–) to the culture of the people whom it serves and thus is enhancing positive behaviors. Participants recognized the need for professionals to provide breast health services. However,because of relatively negative perceptions of and attitudes toward the professional health system,they seemed reluctant to seek out those services. Many indicated they would Behaviors Requiring a Personal Behaviors Professional (cid:129) Breast self-examination be more likely to get a mammogram if the BHOP (cid:129) Clinical examination (cid:129) Sharing information brought the service to their workplace. Data provided (cid:129) Mammogram with others by the women support this idea. Among the questions asked of all focus group participants was how many had been given a mammogram (among those for whom it Figure. — A summary of systems and behaviors among study participants. was age-appropriate).All the women who had attended July 2007, Vol.14, No.3 Cancer Control 273 a BHOP session reported having a mammogram at least several earlier studies have shown the importance of once,compared with 73% of non-attendees.These data both male and female family members. demonstrate that bringing messages into the home or As the women in the current study indicated,there workplace enhances results,and perhaps bringing cul- seems to be an opening up of lines of communication turally tailored health messages into the day-to-day between mothers and daughters. This is also supported environments or “real worlds” further enhances the by findings of other studies. Specifically,programs tar- perceived credibility and trust in the message, thus geted at adolescent girls have been shown to help stimu- improving adherence. late conversations about breast health with mothers and As noted earlier,several factors in women’s person- grandmothers.38 Such intergenerational communication al community system might influence personal behav- seems to be important to Appalachian women as well. iors related to breast cancer. However, the linkages Several studies have shown that men play an between the personal system and personal behaviors important role in the women’s breast health issues. are often relatively weak,particularly for women who Many of those studies have focused on husbands of are not close to someone who has experienced breast women who have been diagnosed with breast can- cancer. Women were also asked to self-report on their cer.26,39 Generally,men were supportive of their wives personal behaviors. The BHOP seems to be a factor in and girlfriends but were perplexed about how to influencing women to conduct BSE. A total of 96% of respond to their health needs.39 those who had attended a BHOP session reported doing Studies have found women are more frightened of regular BSEs compared with only 69% of non-attendees. cancer than men are,while men are more likely than There was also some evidence that those who had women to hold negative opinions about cancer educa- attended a BHOP session might take part in other per- tion programs.40 The women in this study suggested sonal behaviors such as sharing the information they the importance of bringing men into cancer education. learned with others,particularly with daughters. They not only want the men in their lives to better The Figure shows that there is relatively little understand the importance of cancer screening, but “cross-over”between the professional system and per- also want Appalachian men to lend their “authority”to sonal behaviors. While participants recognize the need women’s health issues. for clinical examinations and mammograms,most feel that they do not learn adequately how to conduct BSE Implications for Health Education Programs from health professionals and they do not gain infor- The study revealed that women want information mation from health professionals that is valuable about breast health to be short,visual,and prescriptive. enough to share with others. Women want to know how to conduct a BSE,how to interpret lumps, and what to do when detecting a Implications for the Professional Health System lump. Printed material,videos,and the use of a practice Findings of this study are consistent with literature on model were all cited by women as effective ways of women’s health and rural health care. Recent studies communicating information about BSE. have shown rural health professionals are “stretched Findings are generally consistent with earlier studies. thin”in terms of the number of people and geographic Visual communication techniques have proved to be diversity of their service area,and they are also in need valuable among younger women.38,41 Videos targeted to of continuing education about cancer-related issues.36 high-risk groups by age and ethnicity have conveyed Thus,programs that help to provide bridges between desired attitudes and behaviors to targeted populations.38 women and the health system are clearly needed in Personal stories of breast cancer survivors were rural areas. identified as highly relevant and motivating to women. Several studies have explored the development of This is consistent with the theory of parasocial interac- partnerships between community groups and health tion introduced in the 1950s.42 The basic premise is that professionals. A key finding is the importance of com- individuals can develop a form of relationship with “per- munication and relationship-building that is based on formers”who convey a message and thus find the mes- mutual respect.37 The current study illustrates the need sage to be much more personal. For example,if women for programs to bridge the gap that seems to exist were to hear testimonials from breast cancer survivors between the professional health system and the and/or see videos of women demonstrating how to do women it serves. Both the BHOP and workplace health BSE,the women in the audience could “personalize”the professionals fill that need. information more and be more likely to take action. Messages that were cited by women as motivating Implications for the Personal Community System them to care about breast health issues focused on rea- Findings of this study are also consistent with earlier sons to live rather than fear of the consequences. Fear studies that examine the influence that significant oth- of finding out a woman had breast cancer and the neg- ers have on women’s breast health issues. In particular, ative perceptions of treatment options such as radia- 274 Cancer Control July 2007, Vol.14, No.3
Description: