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Report Title:	Focus Groups with Caucasian, African American, and Latino Target Audiences to Freshen the 5 A Day for Better Health Program Message
*Abstract:*	The purpose of this research was to gain insight into new concepts for future communications materials about the 5 A Day program. Research objectives included identifying new ways to "freshen" 5 A Day program messages, exploring the appeal of new concepts, and updating NCI’s awareness of audience attitudes and behaviors about nutrition and chronic disease prevention.
	Details...
Agency:	NIH:National Cancer Institute
Date of Report:	7/1/2001

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Report Title:	Focus Groups - Diabetes and Oral Complications
*Abstract:*	Diabetes is one of the most burdensome and costly chronic diseases of our time. In the United States, an estimated seventeen million people have diabetes and more than three quarters of a million people are newly diagnosed with diabetes each year.1 It is a condition in which the body is unable to either produce or use the hormone insulin, leading to elevated blood sugar levels and potentially serious complications. These complications are a significant cause of morbidity and mortality and are associated with the damage or failure of various organs such as the eyes, kidneys, and nerves. Poor glycemic control can lead to heart disease, stroke, blindness, kidney disease, amputations, and oral disease. The Centers for Disease Control and Prevention (CDC) is dedicated to eliminating the preventable burden of diabetes in the United States. The Division of Diabetes Translation (DDT) works to achieve this mission by combining support for public health-oriented diabetes prevention and control programs (DCPs) with efforts to translate diabetes research findings into widespread clinical and public health practice. Under contract to CDC, ORC Macro conducted a literature review and an environmental scan regarding oral complications of diabetes. Information collected from the literature review and environmental scan suggested specific audience segments on which to focus in further formative research. For more information on the literature review and the environmental scan, see reports entitled Literature Review of Oral, Eye and Foot Complications of Diabetes (April, 2001) and Environmental Scan for Oral Complications of Diabetes (April, 2001). As a result of these activities, CDC determined that focus groups and in-depth interviews should be conducted with an emphasis on African Americans with diabetes and the health professionals caring for these individuals. In this effort, it was critical to solicit information from health professionals who not only have a stake in disseminating the potential materials developed by CDC, but also play a significant role in preventing and treating oral complications of diabetes in African Americans. With this in mind, 4 focus groups were conducted with certified diabetes educators (CDEs), registered dental hygienists, and 8 in-depth interviews were conducted with other important stakeholders addressing oral complications of diabetes, such as practicing dentists (with over 50% of their practice being with African American patients), a representative from a diabetes program of a state health department, and a representative from CDC’s National Diabetes Education Program. Key Findings Relevant to Program and/or Intervention Planning Several important findings have emerged as a result of this formative research. This information will assist CDC in developing communication concepts and materials addressing oral complication of diabetes with the African American population. A selection of these findings follows. Role of CDC Participants envision CDC as a strong organization with which to collaborate in the effort to educate African Americans about oral complications of diabetes. Nevertheless, participants believed that CDC should take a more active approach in addressing oral complications of diabetes; that efforts were needed in increasing access to dental care and developing education in this area. Specifically, participants believed that CDC should become a more visible stakeholder within the dental community; CDC should be more aggressive in disseminating data regarding the link between diabetes and oral health. Specifically, it was suggested that CDC develop a campaign focusing on “the three D’s” – diet, diabetes, and dental care. Finally, participants felt that CDC should take more of a leadership role in disseminating, if not creating and developing, no-cost educational information about diabetes and oral complications for both African American patients with diabetes and for the diabetes care professionals that treat them. Importance of Partnerships and Collaboration Participants believed that every stakeholder trying to eliminate the complications of diabetes (members of the diabetes care team) has a role in improving and promoting the oral health of patients with diabetes. Participants felt that many stakeholders can participate in a continuous quality-improvement cycle; a series of steps designed to enhance processes leading to improved patient and program outcomes at the state level and practice level. Specifically, participants spoke of the merit of programs that involve partnerships between minority faith- and community-based organizations and health care facilities in a collaborative effort that specifically addresses the cultural needs of the African American population. Churches, health fairs, and community centers were repeatedly mentioned as places/opportunities to effectively reach this population in the effort to reduce the effects of diabetes complications. In addition to CDC, participants recognized and recommended the American Dental Association and the American Diabetes Association as key organizations to partner with in any collaborative effort. Content-Specific Knowledge, Attitudes, Beliefs, and Behaviors Knowledge Participants stated that they are knowledgeable about the importance of nutrition/diet and exercise in prevention of diabetes and the delay of complications. They also stated that they regularly emphasize several self-management strategies with their patients including blood glucose control, brushing and flossing of the teeth, and routine dental exams for prevention of oral complications. Attitudes Participants noted that it is essential to develop a rapport, or trusting relationship, with African Americans with diabetes in order for these patients to be receptive to any educational messages provided. Certified diabetes educators believed that it is easier for them to address eye and foot complications than oral complications of diabetes with their patients because patients are more concerned about their eyes and feet and more receptive to messages of preventing blindness and amputation. Similarly, registered dental hygienists believed that patients viewed eye and foot complications of diabetes as being a more serious threat to health compared with oral complications. Overall, participants felt that patients perceive of losing their teeth as a natural part of the aging process. They believed that patients may not be motivated to prevent oral complications of diabetes and that patients believe they will lose their teeth regardless of their actions. Beliefs Participants believed that every member of the diabetes care team, from medical to dental professionals, has a role in improving and promoting healthy behaviors and in supporting the patient’s diabetes care management. Indeed, participants felt very strongly that it is their duty and moral obligation to address issues of concern with African Americans with diabetes. Many mentioned that the disease has affected them or their parents, relatives, or close friends in different ways. Also, participants felt that it is easier for patients to prevent oral complications of diabetes than to prevent eye or foot complications. They believed that patients are less likely to seek dental care when experiencing oral complications than they are to seek medical care when they are experiencing other complications of diabetes. It was noted that patients view dental care as a luxury item and a service that they would not typically seek out. Finally, participants expressed very strong convictions regarding what they perceive as barriers or challenges facing their patients in relation to diabetes care: lack of adequate access to services and information about diabetes, competing demands within a household, low socioeconomic status, and external locus of control and fatalism surrounding diabetes. Behaviors Participants felt that, with oral complications, they are able to provide specific instructions for prevention that can be easily implemented by patients such as brushing and flossing the teeth. A few participants spoke of their current efforts in providing information to patients about oral complications of diabetes; many participants expressed their willingness to gather more information on complications of diabetes via several avenues (Internet searches, calling information 800-numbers, requesting materials, participating in seminars or CME-credit activities, etc.). Need for Specific Materials Participants believed that there was a great need for culturally appropriate materials addressing oral complications of diabetes in the African American population, as well as for all populations with diabetes. Specifically, it was stated there is a great need for hands-on, graphical, educational materials that they could use with their clients. Participants stated that handouts with visual images and photos of a mouth impacted by oral complications of diabetes would be particularly helpful to them when attempting to educate their clients. These culturally-appropriate resources to educate African Americans with diabetes about oral complications can also include tools such as booklets and videos. These resources should be very visual and include many graphical depictions showing how diabetes can affect the mouth. Resources should also include minimal text and be written at an appropriate reading level. Moreover, it was indicated that political support for these resources and the availability of trained staff to develop them were essential to the dissemination of materials. It was also recommended that the American Dental Hygienists’ Association be involved in the development of materials, seminars and other programs focused on this issue. Participants felt that it would be very beneficial to include information about oral complications in newsletters or professional journals received by dental hygienists Obstacles in Working with Various Health Care Providers Overall, participants expressed frustration with their professional relationships with various health care providers, in particular with the diabetes care team. Participants most often referred to primary care physicians’ failure to reinforce the health messages about oral complications of diabetes. In particular, registered dental hygienists expressed frustration with their relationship with dentists. They referred to dentists’ lack of reinforcement of the health messages about oral complications of diabetes. In sum, participants expressed concern about the lack of cohesiveness and collaboration among the medical and dental communities. They believed that a more comprehensive approach to care is needed in which dental care is considered part of overall health care. Emphasis on Prevention, Self-management, and Patient Empowerment A consistent prevention theme can be identified throughout the data collection in this formative research across audiences, campaigns, programs, and materials developed for people with diabetes. More and more, emphasis is placed on prevention of diabetes and its related complications, in particular as a result of the newly published, substantial evidence that type 2 diabetes can be prevented or delayed. As such, Diabetes Self-Management Education is the cornerstone of care for all individuals with diabetes who want to achieve successful health-related outcomes. Self-management implies “taking charge” of diabetes by following nutrition guidelines, engaging in regular exercise, taking medication, undertaking regular check ups and examinations, and aiming for regular communication with the diabetes care team. Central to the concept of self-management is the concept of patient empowerment. In working with the health care provider as a partner or collaborator, patients are afforded the best possible results given the resources available to them. However, education is necessary for patients to take on this role. Recommendations for Program and/or Intervention Planning Stemming from the findings of the focus groups and in-depth interviews, recommendations listed in this report are intended to guide future activities toward message development and dissemination of information regarding oral complications of diabetes. A selection of these recommendations follows. CDC should: · Take a more active approach in addressing oral complications of diabetes, as it has shown in addressing the foot and eye complications (currently, oral health is not one of the National Objectives for the DDT and their agreements with DPCPs). · Become a more visible stakeholder within the dental care community. · Prepare to manage the perceived lack of cohesiveness and collaboration among the medical and dental care communities, in other to make future efforts actionable. Participants believed that these medical organizations understand the need to address oral health as part of overall health. · Create or support programs that involve partnerships between minority faith- and community-based organizations and health care facilities in a collaborative effort that specifically addresses the cultural needs of the African American population. · Continue to direct efforts to support activities targeting prevention of diabetes and its related complications, in particular as a result of the newly published, substantial evidence that type 2 diabetes can be prevented or delayed. · Take more of a leadership role in creating, developing or at a minimum, in disseminating no cost educational information about diabetes and oral complications. · Target the need for culturally appropriate materials addressing oral complications of diabetes in the African American population. Materials should be hands-on, with visual depictions of instructed self-management behaviors so that oral health professionals can use them with their clients.
	Details...
Agency:	Centers for Disease Control and Prevention
Date of Report:	4/1/2003

3

Report Title:	Oral, Eye and Foot Complications of Diabetes: Eye Complications Report
*Abstract:*	Diabetes is one of the most burdensome and costly chronic diseases of our time. In the United States, an estimated seventeen million people have diabetes and more than three quarters of a million people are newly diagnosed with diabetes each year. It is a condition in which the body is unable to either produce or use the hormone insulin, leading to elevated blood sugar levels and potentially serious complications. These complications are a significant cause of morbidity and mortality and are associated with the damage or failure of various organs such as the eyes, kidneys, and nerves. Poor glycemic control can lead to heart disease, stroke, blindness, kidney disease, amputations, and dental disease. The Centers for Disease Control and Prevention (CDC) is dedicated to eliminating the preventable burden of diabetes in the United States. The Division of Diabetes Translation (DDT) works to achieve this mission by combining support for public health-oriented diabetes control programs (DCPs) with efforts to translate diabetes research findings into widespread clinical and public health practice. DCPs in all 50 States and in nine other jurisdictions are funded by DDT as a cornerstone of this strategy. Collectively, these DCPs compose the National Diabetes Control Program. Under contract to CDC, ORC Macro conducted a literature review, an environmental scan, and formative research in eye complications of diabetes. Data collected from the literature review and environmental scan suggested specific audience segments on which to focus in the formative research. A theoretical framework was developed to assist in delineating the parameters of the research, formulating the informal interview questions, and interpreting findings. Studies show health disparities between racial and ethnic groups in the United States in the rate of diabetes and its associated complications. Certain racial and ethnic communities, including African Americans, suffer disproportionately compared with White populations. An emphasis on African Americans with diabetes and health professionals was selected by CDC for the formative research. For more information on the literature review and the environmental scan, see reports entitled Literature Review of Oral, Eye and Foot Complications of Diabetes (April, 2002) and Environmental Scan for Eye Complications of Diabetes (May, 2002). In this effort, it was critical to solicit information from health professionals who not only have a stake in disseminating the potential materials developed by CDC, but also play a significant role in preventing and treating eye complications of diabetes in African Americans. With this in mind, data collection activities were conducted with certified diabetes educators (CDEs), eye care providers (ophthalmologists and optometrists), and other important stakeholders from key organizations addressing eye complications of diabetes. Key Findings Relevant for Program/Intervention Planning Content-Specific Participant’s Knowledge, Attitudes, Beliefs and Behaviors · Diabetes educators indicated familiarity with eye complications of diabetes, its asymptomatic nature and the perceived confusion among patients regarding blurry vision, changes in prescription and diabetic eye disease. · In-depth interviewees noted the complexity of the combination of social, economic and lifestyle factors in listing the challenges faced by that African Americans with diabetes. · Participants indicated their knowledge of the importance of nutrition/diet and exercise in prevention of diabetes and the delay of complications, with special attention at institutionalized populations (prisons for example). They also indicated that they regularly emphasize to their patients several self-management strategies with glucose control and annual dilated eye exams for prevention of diabetic eye disease (diabetic retinopathy, cataracts and glaucoma). · Participants expressed very strong convictions regarding what they perceive are barriers/challenges that their patients face in relation to diabetes care: lack of adequate access to services and information about diabetes, competing demands within a household, low economic financial status, external locus of control and fatalism surrounding diabetes. · Participants believed that every member of the diabetes care team has a role in improving and promoting healthy behaviors and in supporting the patient’s diabetes care management. “One of the things that I think is important with respect to that is to talk to African Americans. I remember when I was involved with the National Eye Health Education Program, I strongly emphasized to them you need to talk to the people who are involved, who you are trying to implement the program to. People want to know that they have input of optometrists, of ophthalmologists, primary care physician. Everybody involved should have input and the patients. Because they will tell you how they want to get the information so that it’s understandable to them.” Eye Care Professional · Participants felt very strongly that it was their duty and moral obligation to address issues of concern of African Americans with diabetes. Many mentioned that they themselves, their parents, relatives or close friends were affected by the disease in many ways. · Diabetes educators expressed their frustration with what they perceive is a limited role with regards to addressing eye complications: they can only conduct educational sessions and check in a follow up visit whether the recommended visit to the eye care practitioner took place. · Diabetes educators also indicated that is easier for them to address the oral or foot complications with their patients than is with eye complications, mainly because they can give specific instructions for prevention that can be easily implemented once patients leave the office (brush and floss their teeth; check their feet and wear protective socks or shoes respectively). Still, some diabetes educators still incorporate “doable” actions, such as taking nutritional supplements in preventing eye complications. · Eye care professionals perceive that speaking about eye complications of diabetes induces more fear than oral or even foot complications, due to the stigma associated with blindness. “There is one little difference. When you emphasize the fact [that] they’ll go blind, it’s amazing the way it will get their attention. They would rather have their arm cut off than go blind.” Eye Care Professional · Eye care professionals indicated that some times they are the first to recommend to the patient to check for diabetes, given the nature of their vision problems. · A few participants across groups indicated their current efforts, and many more expressed their willingness to gather more information on complications of diabetes via several venues (Internet searches, calling information 1-800 numbers, requesting materials, participating in seminars or CME-credit activities, etc.). Need for Materials · Participants believed that there was a great need for culturally-appropriate materials addressing eye complications of diabetes in the African American population, as well as for all populations with diabetes. For African Americans specifically, participants also believed that the links between diabetes and high blood pressure and cardiovascular disease are to be heavily emphasized. “In my practice one of the big factors is just the difference in the education about diabetes between the African-American and the White populations. A lot of my Caucasian diabetics have looked up stuff on the Internet. They’ve been reading books. They know what their blood sugar should be and they know exactly how they should be managing things and it just seems that a lot of the African-American population that do seem to have diabetes have no idea about what’s going on. No one has taken the time before to go over things with them.” Eye Care Professional · Participants also expressed great need for hands-on, visual educational materials that they could use with their clients. Participants stated that photos, short quizzes, or even better, a tool such as a visual model of a healthy eye and an eye with diabetic eye disease would be particularly helpful to them when attempting to educate their clients. “I can definitely use more handouts. One handout that I have that I use has got a lot of words on it, way too many words on it for eye care. Whereas I have another one for foot care that has a lot more pictures, a lot more white space and less words.” Eye Care Professional Partnerships § Participants believed that every stakeholder has a role in improving and promoting eye health of patients with diabetes. Participants felt that many stakeholders can participate in a continuous quality-improvement cycle; a series of steps designed to enhance processes leading to improved patient and program outcomes. “And even more grassroots, I know some of the hospitals, when I was at Baptist, I had an ophthalmologist that did an awful lot of eye, diabetic eye problems. He was an African American and he was wonderful teacher. He would sit down with all of his colored pencils for all the stuff on his paper whatever he saw in the eye he would doodle. He would sit down there and talk with anybody. He would let me go in there and he would show me some, I used to work in the operating room and they have dual magnifiers when they do eye surgery so a second person can look through and see what the surgeon is looking at.” Certified Diabetes Educator · Participants stated that they used materials from CDC and the U.S. Department of Health and Human Services to educate African Americans about eye complications of diabetes. The American Diabetes Association, Eli Lilly & Co., Pritchard and Hall, and the Lions Club were also mentioned as authoring agencies of resources used. Respondents mentioned that they referred to print materials, Web sites, and visual models in their educational efforts. · Certified diabetes educators stated that they would collaborate with some specific national organizations including CDC, NIH (particularly NIDDK), the American Diabetes Association, the American Academy of Ophthalmology, and the National Federation of the Blind. · A few specific resources were mentioned by stakeholders. Diabetes-Sight.org, a patient- and provider-focused website sponsored by Prevent Blindness America providing information for the prevention of vision loss from diabetes, was cited. The Eye Care America Diabetes Project, a public service project sponsored by the Foundation of the American Academy of Ophthalmology providing educational materials and referral services for persons with diabetes, was noted. Materials such as posters and brochures from the National Eye Institute’s National Eye Health Education Program were also mentioned. · Participants indicated the merit of programs that involve partnerships between minority faith and community-based organizations and health care facilities in a collaborative effort to address cultural needs of the African American population. Churches, health fairs, barbershops, community centers, adult day centers, were repeatedly mentioned as places/opportunities to effectively reach this population. “Well, organizations, I mean, I still think of local churches. I just think that there’s not anybody in the African-American community that can have more influence than a trusted minister in a church to reach his parishioners. There are so many of the churches that my patients tell me about now that have health committees and health fairs and all of these kinds of things. If a church had a knowledgeable nurse or dietician in it, then oftentimes that’s an in-road for the message to start getting out there about taking care and preventing complications.” Certified Diabetes Educator Role of CDC · Participants envision CDC as a strong organization with which to collaborate in the effort to educate African Americans about eye complications of diabetes. · Nevertheless, participants were not familiar with many of CDC’s existing public education resources for diabetes (although the National Diabetes Education Program and the Flu Campaign were identified as examples to follow). · Participants believed that CDC should take a more active role in disseminating/distributing no-cost educational information about diabetes and eye complications. · Several eye care professionals noted that CDC will need to build trust within the African American population for this type of campaign to be successful, and referred to the Tuskegee study and the distrust of African Americans associated with health-related studies. Recommendations for Program/Intervention Planning Several important findings have emerged as a result of this formative research, as discussed above. Stemming from that groundwork, the recommendations listed in the report are intended to guide future activities towards message development and dissemination of information about eye complications of diabetes among African Americans. A selection of these recommendations follow: · Eye care providers stated that CDC should solicit the mass media and disseminate public service announcements regarding eye complications of diabetes through multiple channels including radio, television and print sources. The use of a celebrity spokesperson was strongly suggested in this approach. Participants mentioned Jackie Robinson, Gladys Knight, and Halle Berry as well-recognized African Americans with diabetes that could serve in the role of spokesperson. “I was glad, in fact almost euphoric, at the onset of this discussion when you mentioned CDCP, Centers for Disease Control and Prevention. This is what care is all about, not only control but prevention also. As far as the preventive aspect is concerned, I think it’s important to get the diabetic population educated and empowered and one of the ways that it can be done efficiently is through the mass media. We don’t want to have these things just on the health channel. You want them on channel 2. You want to get charismatic people involved. We don’t have Magic Johnson for diabetes. We need someone like that.” · Participants recommended incorporating information about proper nutrition habits in a culturally-appropriate way with cultural sensitivity with regards to body image, food preferences, meal preparation, and ethnic beliefs (supplements, herbal medicines, complementary medicine). · Diabetes educators recommended to CDC to develop a community tool kit with posters, videos, written materials, screening tools, etc. for distribution to diabetes care professionals. · Participants indicated that patient education materials should be written for lower literacy levels and should be highly visual, graphically depicted, with medium- to large-size font. Photos should be appropriate to the African-American population. · Participants recommended the use of multiple outlets to deliver information to patients and diabetes care professionals (eye care providers and diabetes educators). Hands-on materials, videos, models, color pictures, flipcharts and other visual educational materials were mentioned as very helpful for diabetes care professionals to use with their patients. Seminars at professional conferences, CME courses, CD-ROMs, interactive modules and guides, and handouts are more suitable for the professional development of eye care providers and diabetes educators.
	Details...
Agency:	Centers for Disease Control and Prevention
Date of Report:	11/1/2002

4

Report Title:	National Eye Health Education Program: African American Glaucoma Message Testing Focus Groups Final Report
*Abstract:*	This research was conducted to test radio public service announcements (PSAs) in development for African Americans aged 50 and older. The PSAs are being developed for the Glaucoma Public Education Program: Medicare Benefit initiative. Six focus groups were held in March 2003 where African American participants were presented with five radio PSAs. The NEI was interested in their reactions to the message content, audience appeal and relevancy, cultural appropriateness, and clarity. Participants were also asked about their general vision, knowledge of glaucoma, and radio-listening habits.
	Details...
Agency:	NIH:National Eye Institute
Date of Report:	4/28/2003

5

Report Title:	National Eye Health Education Program: Hispanic/Latino TV PSA Message Testing for Diabetic Eye Disease Focus Groups Report
*Abstract:*	The National Eye Institute (NEI) is developing television public service announcements to raise the awareness of diabetic eye disease among Hispanics/Latinos with diabetes. Eight focus groups were held at the three test sites (Los Angeles, CA; Miami, FL; and Orlando, FL) with three different populations: 1) Family and friends of Hispanics/Latinos with diabetes, 2) Hispanics/Latinos with diabetes, and 3) Hispanic/Latino migrant farm workers with diabetes. All participants had to be native Spanish speakers and able to read Spanish fluently. A trained Spanish-speaking moderator facilitated discussions about the following topics: o General vision o Eye care o General health o Knowledge of diabetes o Knowledge of diabetic eye disease o Television viewing o Health information sources o The two proposed Spanish television public service announcements (PSAs) o Use of Internet or telephone for health information
	Details...
Agency:	NIH:National Eye Institute
Date of Report:	9/17/2003

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