Using Qualitative Research to Develop Strategies to Reach Women With Cancer Screening Messages

Cathy A. Coyne, AMC Cancer Research Center
Diane Bloom, Bloom Research
Julie Andresen, Bloom Research
[ to cite ]:
Cathy A. Coyne, Diane Bloom, and Julie Andresen (1993) ,"Using Qualitative Research to Develop Strategies to Reach Women With Cancer Screening Messages", in NA - Advances in Consumer Research Volume 20, eds. Leigh McAlister and Michael L. Rothschild, Provo, UT : Association for Consumer Research, Pages: 366-370.

Advances in Consumer Research Volume 20, 1993      Pages 366-370

USING QUALITATIVE RESEARCH TO DEVELOP STRATEGIES TO REACH WOMEN WITH CANCER SCREENING MESSAGES

Cathy A. Coyne, AMC Cancer Research Center

Diane Bloom, Bloom Research

Julie Andresen, Bloom Research

[This research was funded under U.S. Centers for Disease Control Cooperative Agreement $U50/CCu806186.]

INTRODUCTION

Traditionally, cancer control activities have focused on the "general public," and have not been specifically targeted to any ethnic or socioeconomic population group. Programs and materials have, therefore, been designed with the "majority" in mind, that being the middle income white population. In a review of the literature conducted in 1991, few studies were identified which focused on the needs of populations not adequately reached with breast and cervical cancer screening messages (Coyne et. al., 1992). Fewer than 6% of the 318 studies reviewed were devoted to the identification of breast and cervical screening barriers among low income black women. No studies were identified which addressed factors related to the low prevalence of screening of Native American women, among whom the rates of cervical cancer incidence and mortality are elevated.

Several organizations have been concentrating significant efforts on reaching culturally diverse populations with cancer control messages. The American Cancer Society (ACS) has made reaching the socioeconomically disadvantaged a major initiative throughout all their program efforts and has identified breast cancer detection as a unit core activity. In addition, the National Cancer Institute has funded several research projects that are seeking to identify methods to effect behavior change among "special populations." The passage of the Breast and Cervical Cancer Mortality Prevention Act, signed into law August, 1990, has also helped to stimulate research and application activities in this area. This law established a program of grants, administered through the U.S. Centers for Disease Control (CDC), to fund state health departments to increase the number of women screened for breast and cervical cancer. One component of the comprehensive programs funded by the CDC is public education. The intent of this component is twofold: to educate the public regarding the importance of early detection in the control of breast and cervical cancer, and to motivate women to be screened. The law specifically states that priority must be given to low income and Native American women in the provision of screening services.

To support the efforts of the state health departments, the CDC awarded a cooperative agreement to the AMC Cancer Research Center (AMC) to provide technical assistance in the area of public education. This technical assistance includes qualitative research to obtain insights into the beliefs, attitudes, and behaviors of the target audiences. Two series of focus groups were conducted with women living in the Denver, Colorado, area as part of this qualitative research. The purpose of these groups was to provide state health departments with information to use in the conceptualization and development of their public education programs and collateral material. The focus group discussion guides were designed to explore the barriers that inhibit women from being screened, and to elicit suggestions regarding messages and channels to use to increase the numbers of women receiving mammograms and Pap tests.

Prior to designing the discussion guide, published literature on the barriers to breast and cervical screening was reviewed. Barriers to screening were found to be very similar among different populations of women. Lack of physician referral, lack of perceived risk, and cost were identified as common barriers to screening mammography. With regard to obtaining Pap tests, lack of knowledge, embarrassment, and fear of finding cancer were suggested as barriers. The relative saliency of these barriers among the different population groups was not well addressed in any of the studies examined. There were few studies that addressed the needs of culturally diverse populations.

The literature review provided researchers with information on which to base the discussion guide and, also provided an understanding of the research gaps. Accordingly, an attempt was made in the first series of focus groups to identify the most inhibitory barriers in order to address the issue of saliency. The second series of groups was designed to explore the influence of culture on screening behavior, and to gain insight into appropriate message framing and delivery.

RATIONALE FOR USING FOCUS GROUPS

Qualitative research is well suited to developing strategies to reach identified populations with health care messages. It addresses the "why," rather than the "how much." When used alone, or in conjunction with quantitative studies, qualitative research offers insights into attitudes, beliefs, motives, and behaviors essential to developing health care intervention strategies. Qualitative research does not seek the hard and fast answers, rather the subjective and intuitive elements, which give a clearer picture of the decision process. For these studies, focus groups, instead of in-depth interview, were chosen as the most productive method for identifying barriers and developing appropriate strategies.

This methodology was chosen because it lends itself to brainstorming, eliciting a rich exchange of thoughts and ideas that build upon each other. Focus groups offer a natural environment for probing the emotional and contextual aspects of human response. In this qualitative research study, the group format may have provided a more comfortable setting in which to discuss attitudes and feelings about potentially sensitive issues related to the body.

Focus groups supply valuable qualitative research data. The appropriate use of qualitative data can enable the researcher to tie together clusters of behavior and identify relationships helpful for determining the barriers to desirable health behaviors. Focus groups were appropriately used in this project to develop hypotheses and gain insights for formulating interventions to promote the use of cancer screening tests. However, focus groups can be used inappropriately. The small number of respondents and the absence of random sampling techniques make drawing statistical conclusions impossible. No attempt should be made to draw firm conclusions or to generalize results to the population at large.

Group Participants and Topics

The eligibility criteria for participants in the two series of focus groups that comprise the qualitative study being discussed in this paper are presented in Table 1. In the first series, primary source of health care was selected as a proxy for income. It was postulated that a major issue for low income individuals is access to health care and, therefore, the inclusion of women who use public health clinics may reveal barriers in this regard. A proxy was selected to avoid possible participant refusal based upon unwillingness to reveal income. It was also posited that differences would exist in the perception of barriers between women who adhere to the ACS mammography screening guidelines (adherers) and women who do not adhere (non-adherers). The ACS's screening guidelines recommend that asymptomatic women between the ages of 40-50 years obtain screening mammograms every one to two years; for women 50 years of age and older, mammograms should be obtained annually. Differences in residence, whether urban or rural, were also explored to determine whether any barriers exist which may be related to difficulties in transportation, cultural variances, or other issues of urbanization. Examination of the behavioral influence of culture based upon race was also sought.

TABLE 1

FOCUS GROUP ELIGIBILITY CRITERIA

The second series of focus groups involved women of lower incomes and different ethnic backgrounds as compared to those involved in the first series. Although the women using public health clinics, as recruited in the first series of groups, were assumed to be of low income, they did not appear to the researchers as being at the lowest end of the income scale. The researchers, therefore, decided to study the needs of women at or below 133% of the federal poverty level in the second series of groups, using income as a screening criteria. Since previous research has not adequately addressed the needs of women from different minority populations, specifically Latinas and Native American women, composition of the focus groups in this second series included women from these populations.

Similar topics were explored in both series of groups. However, in the second series, the researchers also explored characteristics of print materials that might make brochures more appropriate for different population groups. The women participating in these latter groups were asked to review sample print materials on breast and cervical screening. Additionally, the latter groups devoted more attention to the influences of family and religion on decision-making.

RESULTS AND DISCUSSION

Results from first series of groups

Several barriers to obtaining mammograms and Pap tests were identified in the first series of 12 focus groups. Themes and patterns emerging from these barriers are as follows:

Dissatisfaction with health care providers. Dislike and distrust of doctors surfaced primarily in the groups of white women. This distrust was most evident in the urban, white groups. Even the women who said that doctors were most capable of influencing personal health care behavior later vented hostility toward their physicians, whom some perceived as callous and greedy. Stories were shared about physicians whom the women perceived did not spend enough time with them, did not really listen, and were too quick to prescribe surgery or medication. They believed that doctors sometimes ordered tests not because they were necessary, but because it would help them "rake in the bucks."

Misconceptions about Pap tests. Women in all groups were asked questions about the Pap test and cervical cancer. Misconceptions about the purpose of this test were widespread among all the groups. Many women perceived the Pap test as being able to detect everything from cervical cancer, uterine cancer, and ovarian cancer, to hormone levels, venereal disease, AIDS, yeast infections, and cysts. Most respondents thought a woman should get a Pap test every year, yet they were uncertain regarding the age at which cervical screening should be initiated. There was also confusion about whether or not women needed Pap tests after menopause or after a hysterectomy.

Role of positive attitudes. The very strong importance women placed on "a positive mental attitude" was a theme that came out in all groups. A positive outlook was thought to be a deciding factor in staying healthy and also in surviving cancer and coping with other serious diseases. Some women said that because they had a positive attitude, they would not get cancer and, therefore, did not need mammograms. Many felt that cancer resides in most people, but, with a healthy perspective on life, one can control the cells and keep cancer from emerging.

Role of lack of knowledge and denial. More African American women saw themselves at risk for breast cancer as compared with the women in the white groups. Women in all groups were aware of some of the factors that would put a woman at risk for breast cancer; however, many held misconceptions, believing that factors such as trauma to the breast and large breast size influence risk. Age was not mentioned as a major risk factor by women in the groups. It was common for women to say that they would not get breast cancer because neither their mother or sister had ever been diagnosed with the disease. Often, the non-adherers used the absence of these risk factors as evidence that they personally were not susceptible to breast cancer. This was an excuse for them to choose not to have mammograms.

Cost of having cancer. It was interesting to note that many women in the uninsured groups intentionally did not get mammograms. One point that came up repeatedly in the public non-adherer groups was that women who had no money or health insurance made a rational choice not to seek health treatment. As one woman said, "I can't get sick - we can't afford it." Even if they could afford the mammogram, they could not afford to have breast cancer. Thus, having a mammogram to learn that they were going to suffer and die did not make sense to them.

Fear as a barrier. When women in all of the groups mentioned fear as a reason for not having a mammogram, they were referring to several components of concern. Of greatest concern was the fear of finding cancer. Subsequent fears expressed were those of surgery, treatment, suffering, death, losing a breast, and losing a male partner.

Mammograms causing cancer. A pattern that emerged throughout the session with the group of urban private non-adherers was the feeling that a "bad mammogram," defined by the women as one in which a woman receives an overdose of radiation or one in which the technician bruises her breasts, would leave them worse off than if they never had a mammogram. They were afraid that the radiation or trauma to the breast could actually trigger cancer.

Rural, urban differences. Some variations were noted between the urban and rural participants which could suggest differences in attitude. For example, the majority of participants in the urban groups were distrustful of the medical community and sought out alternatives to going to medical doctors - such as self-education, prayer, osteopaths, or chiropractors. Those who sought medical care, asserted themselves by requesting information from their providers to help them make decisions regarding personal health care. Women in the rural adherer's group, though more trusting of physicians, were not as comfortable asking questions of their doctors. They mentioned seeking the advice of pharmacists who were able to spend more time answering their questions. Women in the non-adhering, rural groups expressed a feeling of being victimized by a heartless health care system. One strongly voiced concern in the non-adhering rural group was the indifference and lack of opportunity for good health care for the middle-aged woman without insurance.

Adherer, non-adherer differences. Many adherers, who regularly received mammograms, did so on the recommendation of their doctors or because they had detected a lump. Many of the non-adherers had not seen doctors in several years. In the urban groups, the women seemed to find reasons other than cost to be important in deciding whether to visit a physician. Denial, reliance on the power of positive thinking in cancer control, and distrust of medical tests and doctors were the primary reasons these women did not have mammograms. In the rural areas, cost was a more important consideration because members of these groups did not seem to distrust the medical community. In the urban, public groups, cost was also more of a factor than in the private groups.

Black, white differences. No major differences were noted between the two racial groups with regard to their attitudes and beliefs about breast and cervical cancer. A greater percentage of the African American women saw themselves at risk for breast cancer as compared with the white women. More of the African American women also mentioned that they would listen to the advice of their pastor or minister regarding health, and that the church was an appropriate location to conduct educational health programs on breast cancer. This religious influence was not evident among women in the white groups.

Group support. One interesting phenomena was observed in all of the groups. After experiencing an intense discussion during the focus groups about topics such as cancer, suffering, pain, and death, the women became cohesive and mutually supportive. This supportive environment was noted as being a factor in motivating women to be screened.

Strategies for promotion of mammography. The women in all groups were asked to assume the role of committee members assigned the task of devising a plan to encourage every woman over 40 in their community to have a mammogram. A common theme that came up in many of the groups was, "Take care of yourself." They felt that women tend to put their husbands, children, and jobs first and often have no time left over for themselves. The themes, "Do it for you," and "You're worth it," came out repeatedly. Another theme that came up in the groups was, "Do it for peace of mind." A mammogram connoted reassurance for them. Another possible theme that came up frequently was, "Early detection can save your life and your breast." Participants also suggested using a flyer or brochure with a simple explanation of a mammogram. Other information for the brochure would include: the place and time of testing, how long it will take, assurances that the equipment is safe and that the technician is well-trained and experienced, and when and how they will be informed of the results.

Saliency of Barriers. An attempt was made during the focus groups to ascertain which of the barriers mentioned were the most salient. The women were asked to rank the barriers in order of their ability to absolutely inhibit women from obtaining a Pap test or mammogram. Although this process helped women to eliminate the least important barriers, they were not able to come to consensus regarding the most salient barrier.

Results from second series of groups

It is beyond the scope of this paper to discuss the results of the second series of focus groups in great detail. Therefore, only major findings relevant to health education program design and implementation are presented. Many similarities across the three ethnic groups were evident with regard to beliefs, knowledge, sources of health information, and perception of risk. Similarities to the responses provided by the women in the first series of focus groups were also evident. Differences among the various groups will be highlighted and discussed.

The discussions that were part of the second series of focus groups provided health education program planners with insights into the educational needs of women who are not being adequately screened. Women were, in general, knowledgeable about mammography (i.e., what it is and its efficacy in detecting cancer early) and were aware of the benefits to early detection. Many, however, could not precisely describe the procedure. As in the earlier groups, several misconceptions were voiced by the women, which may have influenced their perception of risk and dissuaded them from being screened. The women, who were all over the age of 50, did not view age as a risk factor for breast cancer and, therefore, did not see themselves at risk. Trauma to the breast was seen as a causal factor for breast cancer. Other risk factors identified by the participants, including family history, also served to reduce the women's perception of susceptibility. If applying the Health Belief Model, perceived susceptibility is one variable that influences an individual's behavior (Rosenstock 1991). Other variables of the Health Belief Model, including perceived severity and perceived benefit did not appear, in this case, to be influential in the screening behavior of the focus group respondents. A majority of the women participating in the groups viewed cancer as a very serious disease, frequently with a fatal outcome. Yet, even though they recognized the severity of the illness and saw benefits to early detection methods such mammography and the Pap test, the women were not willing to adopt screening behavior. Thus, their lack of perceived susceptibility had greater influence over their behavior.

Embarrassment was viewed as a barrier to screening, especially for cervical cancer, by many of the participants. Embarrassment, if experienced by a woman upon initial screening, may dissuade her from returning for subsequent tests.

Fear of finding cancer was mentioned by many participants as one reason women may not choose to be screened. Value expectancy theories (Carter 1991) of health behavior are useful in predicting individuals' behaviors when expected outcomes are known. Women who fear the outcome of being diagnosed with cancer are more hesitant to have a mammogram or Pap test. Although the focus group participants did understand that early detection of cancer resulted in better outcomes, their fear of cancer as an outcome overshadowed any rational understanding of early detection.

Other barriers that were mentioned include cost, transportation, and other issues related to the provision of screening services (e.g., child care). Cost did not seem to be the most salient barrier among these women, as anticipated by the researchers. There was greater discussion regarding cost among the women in the first series than among the women in these groups.

When asked whether their church or religious beliefs would have any influence over their behavior to be screened, the majority of the women, regardless of ethnicity, responded that they would not. The Native American women did state that, although religious beliefs may not directly influence their behavior, those beliefs would most likely encourage screening as a means of keeping themselves healthy.

None of the women, in any of the groups, felt that their families would discourage them from being screened. Although some of the women responded that it would not be something they would talk about with their husbands, and in some cases their children, they did feel that their families would be supportive.

The participants also shared their perspectives on how the message should be delivered and by whom. Participants in all of the groups, regardless of ethnicity, mentioned that they rely on family and friends for health information. Many women mentioned that they would listen to the advice of their daughters, or that of a friend or relative who had either undergone the procedure or had the disease. Other information sources included lay medical books and health pamphlets. Some of the women mentioned that they would rely on their physicians for health information. As expressed by women from one of the groups in the first series, participants in one of the African American groups expressed tremendous distrust of the health care system and stated that they were very skeptical of physicians' motives in providing health care. Unlike the earlier group, women in this particular discussion based much of their skepticism on feelings of discrimination based on racism. White physicians were believed to be especially untrustworthy. This feeling of victimization was voiced very strongly by women in this group of very low income African American women. In the other group of African American women, this feeling was expressed, though not with such fervor. The reason for this belief being so strongly held by one group and not the others has not yet been explained. A possible explanation is that one participant in the group felt very strongly about this issue and voiced her opinion adamantly. This may have given the other women in the group "permission" to express themselves candidly on this topic.

Identification of appropriate, as well as inappropriate, spokespersons to deliver the health education message is an extremely important consideration when designing a health education program. The most well conceived message, if communicated by someone considered to be untrustworthy or unbelievable, will not be received. Therefore, use of a white physician as the spokesperson to encourage women to be screened would not be effective in reaching some African American women in Denver. Many of the focus group participants, regardless of ethnicity, stated that they felt a message would be more believable and relevant if they were able to identify with the person who was delivering the message.

Being able to identify with the message or the spokesperson was also a factor in the design of educational print material. When asked to look at six brochures and choose the one they would most likely pick up and read, a majority of the women in all groups selected a brochure that they felt was specifically targeting them. A brochure with an Indian design on the cover was chosen by the Native American women because they felt the content of this brochure must be addressing the needs of Native women. A majority of the African American women selected a factsheet entitled, "Facts About Breast Cancer, Mammography, and Black American Women." The women also identified with brochures that contained phrases like "for every woman," "advice for women 40 and over," and drawings of women they could identify with.

The layout and typeface are also important considerations when designing an educational brochure. Participants in each of the groups stated that brochures with large print size and generous amounts of white space would be easier to read, and, therefore, more likely to be read. There was not a consistent opinion regarding colors used in the brochures. All groups stated that the color was not a deciding factor when picking up and reading a brochure. For some women, the size of the brochure did influence whether or not they would pick it up. This was especially the case among the Native American women who preferred smaller brochures that would fit into their pocketbooks. They would not want others to see the brochures they were reading, particularly if they contain illustrations of female anatomy, as many mammography and Pap test brochures do. The Native American women also preferred that any visuals of the female anatomy be placed inside the brochure, rather than on the front cover. The other ethnic groups were not as sensitive to the type of visuals used in the brochures, although some of the Hispanic women stated that they would have to hide a pamphlet showing a woman having a mammogram because it was embarrassing.

The preferences regarding the form and content of the educational print material expressed by the women in the focus groups made it clear that when designing health education materials, the planners must have a tremendous understanding of their intended audience. Use of focus group methodology can be very effective in this regard.

Participants were also asked for suggestions regarding appropriate locations to conduct educational programs on breast and cervical cancer. Women in the African American and Hispanic groups suggested churches as good sites, as these are generally central locations that many women frequent. Use of a mobile mammography van to perform breast cancer screening was also suggested as a means of getting more women from the community to be screened. The participants agreed, however, that the church or a mobile unit was not an appropriate site to perform Pap tests, which they feel should be administered in clinics or physicians' offices.

HOW INFORMATION DERIVED FROM THE GROUPS HAS BEEN USED

The information and insights derived from the focus groups are being used by state health departments in the design of the public education components of their breast and cervical cancer programs. One state health department, in particular, has used the information obtained from the first series to develop messages that will be used in educational programs intended to reach inadequately screened women. These messages are to be delivered by women from the community who are being trained as lay health educators. Hence, the intended audience and recipients of the messages should be able to identify with the spokespersons, as they will be "women like them," from the community. The program planners from the state health department also found that identification of the information needs of the women was helpful in narrowing the content of the program. They were able to tailor the message so as to address misconceptions and beliefs that may have potentially served as barriers to screening. The participants' input into the design of educational brochures has also encouraged health educators to consider those characteristics which are important to the intended audience.

In addition, the focus groups provided program planners with an awareness of how much the skill and demeanor of the mammographic technician influences whether a woman will choose to return for a mammogram according to screening guidelines. This insight persuaded program planners to include in the professional education component of their programs, a focus on establishing rapport and maintaining the woman's dignity during the examination. Awareness of the importance of appropriate logistical arrangements for the screening programs was also heightened by the responses of the women in the groups.

DISCUSSION: WHERE DO WE GO FROM HERE?

As noted, qualitative research can provide insights into the development of effective strategies to deliver health messages and motivate behavior change. The information from the focus groups discussed in this paper has assisted planners in the design of breast and cervical cancer screening programs that will reach women with messages motivating them to have mammograms and Pap tests. However, there are still several research gaps that need to be explored. One issue that must be addressed if program planners are to tailor their messages to the specific needs of their intended audiences is that of which barriers-as identified by the women-are the most salient. Focus groups may not be the best method to use in prioritizing barriers, as it is most effective in generating ideas through brainstorming. The use of quantitative methodologies should be explored as a means of identifying the most salient barriers effecting women's behavior, as these methods enable the researcher to quantify that which is generated through qualitative research. Larger numbers of women may need to be recruited to explore the issue of saliency, as women tend to be at various stages of behavior change and the barriers may be related to these stages.

There is a paucity of research that focuses on the specific needs of culturally diverse populations. As revealed through a review of the literature, few studies have addressed the needs of these population groups. More research must be directed toward populations that have been traditionally underserved by cancer control efforts. Greater emphasis should also be placed on developing effective research methodologies that provide a better understanding of how to reach very low income populations with health messages. Traditional strategies of recruitment and focus group facilitation are not effective in reaching individuals from low income communities. An emerging area of research is the development of strategies to deliver health education messages that do not rely on the printed word. Brochures and pamphlets are not effective tools to reach all segments of the population with health information, particularly individuals with limited or no reading skills, and those persons who traditionally rely on oral communication.

Qualitative research has contributed tremendously to health education program planning. These efforts should continue and expand to include populations not adequately reached by previous health education programs.

REFERENCES

Coyne, Cathy A., Karin Hohman, and Arnold Levinson (1992), "Reaching Special Populations with Breast and Cervical Cancer Public Education," Journal of Cancer Education, 7(4), 293-303.

Rosenstock, Irwin M. (1991), "The Health Belief Model: Explaining Health Behavior Through Expectancies," in Health Behavior and Health Education, eds. Karen Glanz et. al., San Francisco: Jossey-Bass, 39-62.

Carter, William B. (1991), "Health Behavior as a Rational Process: Theory of Reasoned Action and Multiattribute Utility Theory," in Health Behavior and Health Education, eds. Karen Glanz et. al., San Francisco: Jossey-Bass, 63-91.

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