Concerns, perceptions, and beliefs
Cost of health care and lack of health insurance were the dominant concerns among these women. These two issues kept women from routinely seeing a health care provider. A majority of the participants lacked the financial means to purchase health insurance for themselves or their families if their employer did not provide it: "My husband is going to retire in 2 years, and I have to think of how that is going to affect us with our medication and health care."
Older women tended to believe that they were "falling through the cracks" when it came to health insurance. Women who retired early (in their 50s), lost their jobs, or who were divorced or widowed had a difficult time paying for health care and health insurance; they were too young for Social Security and Medicare or did not qualify for Medicaid:
For me it is the affordability of the insurance. When my husband died, I had to drop our insurance because by the time I paid my health insurance, it left me with $250 per month to live on. If you are older than 55 and younger than 65, you are falling through the cracks because there is nothing out there to help you.
Cancer was a personal and emotional topic among participants. Nearly every participant had a personal story or experience of how cancer affected her life: "I almost didn't come tonight because my mother told me a half hour before I left that she has cancer in her lymph nodes and lungs." Religion was identified as a comforting factor that helped individuals and families get through trying times. Several participants were cancer survivors themselves: "Cancer concerns me because I have had it."
Overall, participants were generally more knowledgeable about breast cancer than cervical cancer. However, they were able to identify the screening tests associated with both types of cancer. Women unanimously agreed that having a Pap test and a mammogram were extremely important and that the examinations could detect cancer in the early stages. Several participants mentioned that it was even more important for women who have a family history of cancer to be screened more frequently and at an earlier age: "If you are having problems or anyone in your family has had problems, then do it more often."
Women cited friends and family as their sources of information about breast and cervical cancer. As a result, several women shared misconceptions relating to breast and cervical cancer. For example, when asked about breast cancer, one woman said that it was more prevalent and harder to detect in women with large breasts and that women with breast implants were unable to have mammograms. Cervical cancer misconceptions included tampons causing cervical cancer and women who have had a hysterectomy, regardless of reason, no longer needing Pap tests.
Knowledge about the recommended frequency of Pap tests and mammograms varied by region and age. Women in Charleston and Morgantown were more knowledgeable about the recommended frequency of Pap tests and mammograms than were women in Beckley. Younger women expressed more uncertainty as to the frequency and purpose of Pap testing than older women.
Participants reported that they did breast self-examinations; however, some reported doing it only when they remembered rather than monthly. Older women were more likely to perform breast self-examinations than younger women. Several participants mentioned that they rely on breast self-examinations and rarely have mammograms because of cost and lack of insurance: "I lost our insurance and relied on the self-exam. I went 4 years without a mammogram."
Women discussed the role that health insurance played in relation to breast and cervical cancer screening recommendations. Some women perceived that because of their lack of insurance, doctors did not recommend Pap tests or mammograms: "As much as we want to think that they just want to make us better, they know about the insurance underneath it all. I think they know they are not making a profit."
Barriers to screening
The major barriers that prevented women from getting a Pap test or a mammogram were cost ("We just don't go because of the cost") followed by fear of getting a mammogram ("fear of finding cancer," "fear of the unknown," "fear of pain") and embarrassment during a Pap test ("How much more vulnerable can you get when you are lying on your back with your legs in stirrups?"). Other barriers mentioned include discomfort, lack of transportation, denial, and lack of time ().
Perceived Barriers to Receiving a Mammogram and Papanicolaou (Pap) Test Among Low-Income, Uninsured, Female Focus Group Participants Aged 25 To 64 Years (N = 69) Living in Beckley, Charleston, and Morgantown, WVa, June 2005
Health care providers have the power to help women overcome some of these barriers. For example, to overcome fear and embarrassment, participants expressed a desire for health care providers to talk to them during the procedure, letting them know what they were doing and why they were doing it.
According to focus group participants, the best motivators for screening were women sharing their cancer stories and testimonials, the buddy system, health care providers, and educational campaigns focused on increasing knowledge. Several women mentioned an educational campaign similar to "Janet's story" as being an effective campaign model for the WVBCCSP. Janet's story, a smoking cessation educational campaign, is about a woman from southern West Virginia who died in her early 40s from lung cancer caused by smoking.
Nearly all women believed they would be motivated to schedule a Pap test or mammogram if a family member or friend would go with them to the appointment. They stated that this type of buddy system would help them overcome their fears and encourage them to follow through with their appointments.
Women acknowledged the important role health care providers play in motivating women to get a Pap test and a mammogram. They noted that health care providers educating them on the examination and its purpose, along with recommending the test, would motivate them to make appointments. However, several women admitted to canceling their appointments out of fear, despite their doctors' recommendations: "It depends on how serious the doctor thinks the problem may be." However, they said that if the health care provider talked to them during the procedure, it would help eliminate their fears and reduce their embarrassment. It was also discovered that women preferred a female physician over a male physician:
I had a male gynecologist for years when I was young, and there is no comparing them to a female. They are gentler and understand where you are coming from, the emotional ups and downs. They are also sensitive.
Awareness of the WVBCCSP
A majority of women were unfamiliar with the WVBCCSP; however, they were interested in knowing more about the eligibility guidelines and available providers in their areas. Participants who knew about the program stated that they first learned about it through their health care provider or local Department of Health and Human Resources. Those aware of the WVBCCSP went on to state that they educated their friends and family about the program.
Women who lived in Charleston and Morgantown were more likely to have heard about the WVBCCSP than women living in Beckley. Familiarity with the program tended to increase with the availability of health care providers in the focus group area. Several participants expressed concern about the limited number of health care providers in their area who participated in the program and perceived doctors' biases against patients who participated in federal and state health insurance programs.
Recommendations for educational campaign
A majority of women believed an educational campaign would increase breast and cervical cancer awareness and knowledge and use of the WVBCCSP. By creating an educational campaign to educate women about breast and cervical cancer and the WVBCCSP, participants believed that barriers could be overcome: "I think it would definitely get more women to get the exams." Participants also felt that it was important to begin educating women at a younger age: "Start in the schools. Educate young girls about the importance of Pap smears and mammograms."
The campaign's message should be consistent, strong, and serious in nature: "We'll get through to the humor after we get through the crisis." Suggested campaign messages included: "A few moments of embarrassment are not worth risking your life over" (for cervical cancer/Pap test); "We want you for LIFE"; "Stop cancer before it stops you"; "Your life may depend on reading this"; and "Don't be a cancer statistic." Women felt that knowledge was empowering: "Maybe educate girls about it when the teachers are talking to them about getting their period. Let them know that part of becoming a woman is making sure your body is taken care of." The media were viewed as a great resource for spreading the message: "I think advertising done right is the most powerful tool we have."
The messengers of the educational campaign need to accurately portray the program's target audience, West Virginia women. The message should be delivered by multiple women from across West Virginia from diverse age groups and racial and ethnic backgrounds:
I don't think the messenger should be one person. It should be many women — older, younger, and backwoods women. In this area [Beckley], you have a lot of people who are not going to respond to advertising from strangers.
The messenger would encourage women to talk to their doctors and get screened for breast and cervical cancer.
The educational campaign should also include direct mail, television, and radio in addition to a grassroots campaign. Radio and television educational campaigns did not necessarily mean advertisements, but rather a combination of news stories and informational pieces to educate women about breast and cervical cancer and the WVBCCSP. Television and radio news stories or informational pieces should be adequately promoted so women know to tune in. Direct mail campaigns should be colorful, bold or "something of interest." The likelihood of reading direct mail varied by age and location. Younger women were more likely to read all of their mail than older women. At the same time, women in the Beckley area were more likely to read their mail than women in Morgantown and Charleston.
Information women would like included on a brochure or in an advertisement included: WVBCCSP eligibility guidelines, the importance of screening, cost of screening, and breast and cervical cancer statistics. Additionally, participants indicated that it would be beneficial to have a Web site or telephone number available to contact program staff about participating providers in their area and gain more information about the free or low-cost procedures offered.
Educating health care providers about the WVBCCSP should be an area of focus for the campaign. Women tended to rely on their doctor or clinician to recommend routine Pap tests and mammograms. Providers should also be educated about the important role they play as motivators.