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Report Title:	Communication about Cancer Risk with Health Information Seekers: Results of Focus Groups and Key Informant Interviews
*Abstract:*	The National Cancer Institute’s (NCI) Office of Education and Special Initiatives (OESI) is developing educational material to help cancer information seekers accurately interpret numerical expressions of risk and increase their ability to put such information into context. Guided by a review of the risk communication literature and materials, plus input from risk communication experts, OESI drafted a series of cancer risk scenarios, each as a short, one-paragraph story a person might tell another during a conversation. One scenario also had four questions and answers to address the issues raised. To explore information seekers’ reactions to these materials and some visuals and to determine whether the same scenarios can be used with various populations, OESI commissioned eight focus groups (with 67 participants). Most focus group members were between the ages of 40 and 59, were health information seekers, had sufficient literacy and language skills to read and discuss materials written in English, and had graduated from high school or college. Participants were not cancer survivors or employed in a medical setting. Four computer-assisted telephone focus groups were conducted with African Americans and Caucasians; members came from large and small communities across the United States. Four in-person focus groups were conducted with English-speaking Hispanics, two in Bethesda, Maryland and two in Chicago. All focus groups were segregated by gender. To obtain input from other population groups, six key informant interviews were conducted. Three were with health educators or health activists who work with Asian, Native Hawaiian, and Pacific Islander (API) communities; three were with similar professionals who work with American Indian or Alaska Native communities. The following materials were discussed in the focus groups and key informant interviews: > Four sets of vignettes—each introduced particular genetic/family history, behavioral, or environmental cancer risk concerns; three included multiple scenarios; and one contained questions and answers to guide readers through relevant risk concepts > A list of possible topics for a risk publication > Three visual representations of risk likelihood to refer to during the telephone discussions. As with all qualitative research, findings reported here are directional in nature and cannot be considered representative of or generalizable to some known population. General Risk Findings Focus group participants mentioned a range of health risks that concerned them, and said they tended to think about these health risks anywhere from several times a day to weekly. They had taken actions to reduce health risks, such as improving their eating habits, getting more exercise, seeking medical care for chronic conditions, drinking bottled water, and taking vitamins. Participants looked for information about health from a variety of sources, including various sites on the Internet. Focus group participants thought that many things cause cancer, such as environmental, lifestyle, and genetic factors. They generally thought that a person’s risk of developing cancer could be reduced (especially through lifestyle changes), but not eliminated. If they read or heard a news story about a new means of reducing cancer risk, their reaction depended upon the action involved and the source of the information. Some took actions if they seemed safe and were easy to do; others waited until multiple credible sources suggested the same action. Key informants emphasized that attitudes towards cancer risk vary dramatically by education, culture, and region. In some cultures, asking questions about or discussing cancer could be viewed as bad luck. Some perceived that it is more appropriate to seek health information for others than for oneself. The degree to which individuals are concerned about cancer risk may depend on the severity and number of other health challenges they face. Participants and key informants reviewed 1-paragraph anecdotes that used first-person stories to set up three types of common risk situations: those involving a family history of cancer, those involving behavioral risk factors, and those involving potential environmental risk factors. Participants generally found this approach engaging and easy to follow. Focus group participants liked characters who take control of their lives by doing what they could to prevent cancer or detect it early. This desire appeared to hold across cultures. Stories with sentiments like “there’s nothing I can do” tended not to be well-received. Scenarios about topics for which there is uncertainty or confusion (e.g., cancer appearing in young people with no family history of it, neighborhood cancer clusters), were well received—readers both identified with the topics and found them engaging. They seemed to resonate because participants had wondered about such things or knew friends who had similar situations. Key informants cautioned that some details in the scenarios may not be applicable for many members of the populations they serve. Participants did not like stories that presented myths as facts, which are later dispelled. This approach made the storytellers appear ignorant. Since health information seekers are not ignorant, they did not identify with the stories and would not see the publication as relevant. The approach disturbed some participants, who expressed concern that readers might stop before reading the accurate information. Focus group members pointed out the need to pay attention to certain words. They recommended that terms such as “prevention,” “at-risk,” and “clinical trials” be clearly defined. Men recommended avoiding the word “worry,” because men may be concerned, but they do not think of themselves as worrying about cancer. The one scenario that discussed clinical trials interested focus group members, but distracted them from the risk concepts. The scenario generated a lot of discussion and questions, but the questions were equally likely to be about clinical trials and about cancer risk. Participants received a two-page document with an introductory scenario, followed by four questions and answers that presented key risk concepts. In general, this approach to walking participants through risk concepts appeared to work well. Participants suggested reordering the questions and making some editorial changes. Participants were given three graphic representations of risk. They preferred one that depicted human forms (in this case, females) and recommended that the images should look like “real” women rather than stylized figures. Participants thought portrayals of women humanized and personalized risk information. Based on initial research, OESI had proposed developing cancer risk material focused on concepts related to understanding risk. When asked to choose risk topics of interest from a list, however, participants were clearly interested in information related to risk-reducing behaviors. Their top four choices were: what to do to decrease the risk of getting cancer, information to help decide about taking action, types of cancer risk that can and cannot be controlled, and understanding what cancer is. Although most focus group participants said they would be interested in a booklet on cancer risk, some expressed concern that it would be too elementary. They said that many health information seekers think they already know a lot about cancer and the risks for it and would not be satisfied with basic information. Instead, they are looking for information that is somewhat more sophisticated, yet presented in an easy-to-understand format.
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Agency:	NIH:National Cancer Institute
Date of Report:	1/1/2003

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Report Title:	Identification of Variables That Influence Access to Eye Care
*Abstract:*	Objective: To identify factors that influence access to care for those at higher risk for eye disease and vision loss, and to identify effective approaches and methods aimed at increasing access to eye and/or health care services. Method: In-depth interviews were conducted with experts in health care delivery who represented 10 government agencies and non-government organizations. Interviews were conducted in-person and by telephone. Results: Study findings indicate that insurance status is a key factor in the receipt of health care services. Other factors cited were health literacy, patient perceptions, language, transportation, cultural competency, and availability of providers. A number of experts indicated that promoting awareness and educating the public are critical in dealing with barriers to care. Programs that addressed barriers to care by tailoring solutions for individual barriers were more effective than programs that addressed a number of barriers at one time. Programs that were culturally appropriate, provided community-based outreach, and incorporated performance feedback were classified as “exemplary” programs. Conclusions/Implications: Improving access to timely and proper eye care can be facilitated by addressing patient perceptions and deficiencies in health literacy through increased education and awareness about eye health and eye disease.
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Agency:	NIH:National Eye Institute
Date of Report:	7/28/2005

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