Tuesday, November 3, 2009

Awareness of cancer risks and screening

Some participants had some knowledge about cancer risks, but many participants in each group had inaccurate information about cancer risks, as well as about guidelines for age, frequency, and types of screening needed. Furthermore, many were unaware of the available free screening program
African American participants knew that cancer is often diagnosed too late. They identified age and family history as risk factors for breast cancer and sexual activity as a risk factor for cervical cancer. While African American participants knew the Pap test finds cancer, they also believed it diagnoses sexually transmitted diseases (STDs) and involves cutting the cervix. A woman said, "You get a Pap smear. You're going in . . . they cut that thing, take that tissue out and, you know, they analyze it" (Allegheny County, Wave 1).

Appalachian participants believed themselves to be at higher risk for cancer than the general population, believed cancer was treatable, knew what tests were necessary, and wanted to be tested. They also perceived cancer to be one disease and believed that families who had any type (e.g., bladder, lymphoma) were at increased risk for breast and cervical cancer. Because of their heightened sense of risk, Appalachian participants often wanted mammograms before the recommended age and complained that insurance would not cover them. Several told stories of women who were diagnosed with breast cancer at very young ages after arduous battles to get screened; outcomes in these stories were typically poor.
Latina participants had little understanding of particular risks for either breast or cervical cancer, although they knew that breastfeeding conferred some protection from breast cancer. Similarly, Amish participants had little information about risks and screening guidelines. While Amish participants did limit their use of technology, they did not have cultural objections to cancer screening. However, the participants tended to view all women's health issues in relation to childbearing. Many thought that if they were having babies and being checked by their Amish midwife, they were in good health. They assumed Pap tests were performed during these check-ups. In reality, this might not happen, since many Amish midwives receive no formal medical training. As one woman explained, "When I was having babies about one a year I got [Pap tests] regularly, but not now" (Indiana/Jefferson County, Wave 2).

Desire for information

Participants in all groups expressed a strong desire for accurate information about risks and screening. However, health care providers often do not offer such information or do not offer it in acceptable or understandable ways.
Participants in all groups wanted tailored health education. They favored first-person narratives from women they knew and/or who lived in their communities. However, the desired format varied. African American participants wanted printed materials, written in plain language and supplemented with pictures. They also preferred oral presentations, followed by television, radio, and billboards. They recommended churches and shopping centers as venues for dissemination. They identified cash and gift certificates as reasonable incentives for both educational programs and screening services.
Appalachian participants wanted information and early screening. They recommended teaching women at a young age and sending messages home with schoolchildren to reach parents, as exemplified by this quotation: "I think if my child comes home and told me, 'Mommy, would you please go to the doctor. I don't want you to get sick and die,' I would go to the doctor" (Greene County, Wave 1). They suggested distributing information through local papers, popular magazines, phone chains, and radio, and at the unemployment office, stores, fire halls, and churches. They did not mention incentives for screening.
Latina participants placed a high value on health education. They wanted plain-language pamphlets with English and Spanish text side-by-side and pictures.
Well, because in Spanish, at least only those who do not know English very well it is perfect, but the majority of people get information in English. [Bueno porque en español solamente por lo menos los que no dominamos bien el inglés es perfecto, pero en inglés se informaría la mayoría de las personas.
And also because, obviously, if you speak Spanish and you don't know the words or the technical terms, they put them there. You then know what to tell the person that is speaking to you. [Y también porque obviamente si tú hablas español y no conoces las palabras o los términos técnicos allí te lo ponen. Tú ya sabes que decirle a la persona que te está hablando en inglés y quiero hablar con la persona bilingüe, pero sobre todo me interesa " x" cosa.
(Allegheny County, Wave 2)
Latina participants favored narratives, which they said should include signatures and the name of a reputable source (e.g., hospital, cancer center) for credibility. Any materials should include details about where to go and if "papers" (immigration documents) are required. They recommended information be disseminated on Spanish-language television, as well as at churches, stores, and restaurants.
Amish participants were receptive to information distributed by state health nurses, who have formed close relationships in their communities, and midwives, who were felt to be trustworthy and knowledgeable. Amish participants said they would not contradict their husbands if cancer screening were opposed; however, they did not seem to have this problem. Rather, their husbands tended to defer to the midwives about women's health. Other methods of dissemination Amish participants suggested include mailings, talking to women's groups or women at church, advertising in the newspapers, and posting flyers in public places (e.g., herb store, cheese house). Amish participants did not express a need for incentives to attend screening. For educational sessions, they did not require, but appreciated, light snacks

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