NEHEP Plans a National Outreach Program

Reaching Latinos/Hispanics With a Sight-Saving Message

The National Eye Health Education Program (NEHEP) has begun planning its national Latino/Hispanic Outreach Program, which will aim to increase awareness of diabetic eye disease, particularly diabetic retinopathy, among Latinos/Hispanics, a group with one of the highest incidences of diabetes in the nation.

"Through the extensive background research we have conducted on the Latinos/Hispanics in the nation, we are well-positioned to create a campaign to help prevent blindness among an important population at high-risk for diabetic eye disease," stated NEHEP director Rosemary Janiszewski.

In planning the program, NEHEP staff found that, although diabetes is a chronic and growing health problem in the Latino community, few Latinos know that diabetic retinopathy is one of the most common complications of the disease. "The awareness of eye disease among the Latino community just is not out there," said Joseph J. Estrada, O.D., who with his wife Carrie, is one of only two Latino optometrists in a three-county area in the region of Salinas, California, a town that is 51 percent Latino. "I'm glad the NEHEP is planning to inform Latinos of the impact this condition has on them. Not only will the program benefit the majority of the people in the town where I live, its impact will be multiplied on a national level."

Pablo Hernández, P.A., who regularly treats people with diabetes in Miami's Little Havana district, stated, "The Latino/Hispanic Outreach Program should empower Latinos with diabetes with the knowledge that a yearly eye examination through dilated pupils can help prevent blindness. These patients are told regularly by physicians how to care for their feet, yet little or nothing about the serious eye complications of diabetes."

Diabetic retinopathy is the leading cause of blindness among working-age adults. One in 10 Latinos between the ages of 19 and 45, or 1.3 million people, has diabetes. Among those ages 45 to 74, the rate is one in four, and these numbers will likely increase.

Latinos make up 9 percent of the U.S. population and are the second largest and fastest growing minority group in the United States. The American Diabetes Association estimates that by the year 2000, one-half of all people with diabetes in the United States will be Latinos.

Regional studies in California, New York, Florida, and other locations suggest that Latinos have more severe diabetic complications than the non-Latino white population, putting them at high risk for diabetic retinopathy. This high-risk profile of the Latino is compounded by social factors. Approximately 25 percent of Latinos live below the poverty level, which may severely limit their access to medical care. Older Latinos, who have a higher incidence of diabetes, are one of the poorest groups in the nation. As a result, many Latinos may lack the resources to have eye examinations regularly. When they do enter the health care system, many have difficulty communicating with English-speaking doctors.

Cultural differences that run deeper than language often prove to be major stumbling blocks. Studies on the knowledge, attitudes, and practices of Latinos regarding health topics show that many Latinos have a strong sense of "fatalismo," or fatalism. They believe that complying with treatment recommendations such as dietary changes will fail because "it is God's will" that they live with this chronic condition. And because diabetes is so prevalent among Latinos, many think the disease is as normal as the common cold.

Another factor is "personalismo" (the personal touch). Latinos need to share their feelings with their doctors. However, because of cultural differences, they may view non-Latino doctors as unresponsive and distant. This perception also may lead to poor compliance with doctor's recommendations such as returning for eye exams regularly.

To obtain an accurate picture of Latino culture as it is represented in the United States and ensure that its outreach program is accessible to all members of the population, NEHEP staff conducted focus group research among a number of Latino population subgroups. These groups included Puerto Ricans in New York, the Latino subgroup with the highest prevalence of diabetes; Mexican Americans in Los Angeles, the group with the second highest incidence; Cuban Americans in Miami, Florida; and the Central American population in Washington, DC. Interviewed were Latinos with diabetes between 45 and 74 years old, who spoke Spanish as their first or only language, and who had an annual household income under $35,000.

Although the focus group research did uncover some differences among these populations, more notable were a number of commonalities. For example, across all of the focus groups, participants lacked awareness about diabetic retinopathy. When asked about the major complications of the disease, the NEHEP found that of the Latinos with diabetes interviewed in the focus groups, none mentioned diabetic retinopathy specifically. However, when the condition was described to them, many interviewees reported being aware of eye complications associated with diabetes but did not know that they should be examined for them.

This lack of awareness indicated to NEHEP staff that a secondary audience for outreach efforts would be the primary care physicians treating these patients because few may be informing their patients with diabetes about the need to have a dilated eye examination to detect diabetic retinopathy or other diabetic eye diseases.

The common areas of need told NEHEP staff members that they could develop outreach efforts with standard themes and messages. But to further refine planning for the program and ensure that preliminary findings were correct, the NEHEP convened an Ad Hoc Working Group on Hispanic/Latino Outreach, composed of experts in the field of Latino health care. This group spanned the fields of health education and health care delivery and included individuals experienced in developing health communication programs for the Latino audience. These experts reviewed the focus group findings and agreed that they reflected their own personal experience in working with Latinos.

Among the recommendations made by the Ad Hoc Working Group to most successfully reach the Latino population was use of the broadcast media. The group noted that the vast majority of Latinos in this country tune in to Spanish-language television and radio programs. In fact, the Latino broadcast industry has grown to include more than 60 local television stations and several hundred local radio stations. Such popularity gives the media credibility in presenting all types of information for this population, including health care information. For example, an increasing number of health and medically oriented programs are available on Latino media outlets, including health segments on Latino television news programs and "Ask the Doctor" call-in shows on the radio.

In addition, the group recommended using other channels for outreach such as community organizations that provide services to Latinos directly. The Working Group commented that strategies to raise these organizations' own level of awareness about diabetic eye disease should be another effective method for reaching at-risk populations.

"The recommendations of the Ad Hoc Working Group as well as the focus group findings will help us better understand Latinos and more closely tailor eye health messages to the needs of this population. We intend to work at the community level with the organizations that are a vital force in the Latino community to ensure that this message gets across," stated Carl Kupfer, M.D., director of the National Eye Institute.

Launch of the Latino/Hispanic Outreach Program is planned for the summer of 1995. For further information, contact the National Eye Health Education Program, 2020 Vision Place, Bethesda, MD 20892-3655.

Outlook is published by the National Eye Health Education Program of the National Eye Institute, National Institutes of Health, to provide updates on eye health education and disease prevention activities. Outlook also informs readers of new materials and community activities of the NEHEP Partnership organizations and others interested in eye health education. Contributions are welcome. Please direct all submissions, questions, and comments to: Outlook National Eye Health Education Program 2020 Vision Place Bethesda, MD 20892-3655 (301) 496-5248

Calendar

Delta Gamma

A Commitment to Doing Good Works in the Field of Sight Conservation

Sponsoring an exhibit of sculptures, paintings, and photographs by artists with visual impairments may seem like an unlikely activity for a women's fraternity; fraternities are usually associated more closely with social activities than public service. However, this is only one of the many ways that the Delta Gamma Foundation, member of the NEHEP Partnership, fulfills its commitment to sight conservation and aid to those who are visually impaired. "The Art of the Eye" exhibit, available for loan to organizations nationwide, provides viewers with a means for understanding how the artists developed their "vision."

Delta Gamma has been an active voice in the women's fraternity movement since its inception in the latter part of the 19th century. Its motto "Do Good" represents the organization's mission as well as its name. "Delta Gamma" is derived from the Greek letters for the "d" and the "g" in the motto.

In 1936, a member who was blind proposed starting a program of philanthropy for aid to persons with visual impairments. This proposal was officially adopted into the Delta Gamma bylaws as the organization's main mission in 1942.

The organization has a membership of 130,000 women with chapters in the United States, Canada, and England. Each year, alumnae and collegiate members raise more than $1 million for philanthropic purposes. In 1993, the membership contributed more than 63,000 hours of volunteer service in community and campus work for vision-related programs.

"Joining Delta Gamma is a lifetime commitment to service," explains Jean Goldsmith, chairperson of the Delta Gamma Foundation Aid to the Blind and Sight Conservation Program. Members typically join the organization by pledging to the Delta Gamma fraternity during college. After graduation, alumnae service continues throughout life. The Delta Gamma Foundation encourages fraternity members to work for charitable, scientific, educational, and cultural programs. Delta Gammas have been involved since the early part of the century in a broad range of activities related to sight conservation and aid to those who are visually impaired.

In November 1994, Delta Gamma collaborated with other NEHEP Partnership members in conducting a nationwide campaign to encourage people with diabetes to have annual dilated eye examinations. Delta Gamma members contributed to the success of National Diabetes Month by distributing through their chapters nationwide the special brochures for the event, adapted from NEHEP's "Don't Lose Sight of Diabetic Eye Disease" brochure.

Delta Gamma also operates nursery schools for children who are visually impaired. Currently, three centers are in service in Denver, St. Louis, and Los Angeles. According to Ms. Goldsmith, the children who attend these schools receive a head start on their education, and many are later mainstreamed into schools with sighted children.

The Denver Center is called the Anchor Center because the anchor (a symbol for hope) is also the Delta Gamma emblem. In operation since 1938, the Los Angeles Blind Childrens Center is one of the nation's oldest facilities for educating young children with visual impairment. This center operates a hotline to connect the parents of children with visual impairments to social workers who can provide information and direction on accessing further resources. Alumnae and collegians also conduct vision screening programs for preschool and elementary school-age children nationwide.

The Delta Gamma Foundation also sponsors and administers scholarships for students pursuing careers to aid people with visual impairments. In addition to these scholarships, the Foundation's Ruth Billow Memorial fund provides personal aid for Delta Gammas who have visual impairments. In 1994, Delta Gamma sponsored its first grant to send a group of students with visual impairments to the National Space Camp in Huntsville, Alabama. These students, all high-school age or younger, will participate in programs to encourage their study of math and science.

Efforts such as these have earned the Foundation many awards. In 1981, for example, it received the Distinguished Public Service Medal from the American Academy of Ophthalmology. More recently, the Foundation was awarded the 1994 Distinguished Service Award from the Ohio Optometric Association, the Sarasota Alumnae Chapter of Delta Gamma won recognition by the Sarasota Florida County School Board for the "The Eyes Have It" puppet show. The puppet show is presented to encourage eye safety for children and is now a part of the county's comprehensive health education program.

"Delta Gamma is very excited to be a NEHEP partner," said Ms. Goldsmith. "It gives us an opportunity to obtain greater visibility for our own programs. It also helps in our recruitment of volunteers. We look forward to participating in more opportunities such as National Diabetes Month to help get important eye health messages to the public and to work with other important organizations with eye-health programs."

For further information on Delta Gamma's activities contact Delta Gamma, 3250 Riverside Drive, P.O. Box 21397, Columbus, OH 43221-0397; (614) 481-8169.

The Glaucoma Research Foundation

Seeking To Eliminate Glaucoma as a Blinding Disease

The Glaucoma Research Foundation, a NEHEP Partnership organization, is committed to helping those already diagnosed with glaucoma through research, support groups, and educational resources. Communications Director Lisa Wagreich spoke with Outlook about the Foundation's goals and services.

?  What is the mission of the Glaucoma Research Foundation?

To protect the sight and independence of people with glaucoma through research and education, with the ultimate goal of finding a cure.

?  So, you represent the three million Americans with glaucoma and millions more who are at risk?

Right. But specifically, we serve the interests of people already diagnosed with glaucoma. That's our unique niche. We are a comprehensive resource for them. Of course, the Glaucoma Research Foundation also is involved in broad-based awareness efforts to detect undiagnosed glaucoma. But historically, our emphasis is to help those already diagnosed with glaucoma.

?  How much emphasis does the Foundation place on health education?

It is extremely important to us. Although most of our budget is dedicated to research, about 25 percent of our budget is dedicated to education efforts. During the next 12 to 18 months, we will evaluate how the Foundation can help increase awareness of glaucoma within the African-American community. Because the Foundation does not have local affiliates, we are now seeking collaborators and partners to help us in this project. We would like to join forces with organizations that have local, community-based affiliates and plenty of ground troops to spread awareness messages in at-risk communities. The Foundation also will focus more of its future education efforts on quality of life issues. Glaucoma is an incredibly complex, sight-threatening disease. Patients face a number of lifestyle issues that directly correlate to their well being, whether it's communicating with their physicians, coping with the functional aspects of the disease, or dealing with a medication's side effects. There have traditionally been two ways to measure treatment outcomes: cost and clinical efficacy. By adding quality of life to the mix, it adds another component to evaluate patient outcomes.

?  What are some of the programs and resources that the Glaucoma Research Foundation offers to the public?

The Foundation offers a free, 36-page guidebook, Understanding and Living With Glaucoma. It is written by a patient with the help of doctors. The guidebook explains all aspects of the diseases, including its diagnosis, terminology, surgeries, treatment options, and therapies. We also have a quarterly newsletter, called Gleams. It is read by about 24,000 glaucoma patients and eye care professionals. Last year, its circulation grew by 27 percent. Our current issue features highlights from about 30 in-depth interviews that we recently conducted with glaucoma patients regarding their quality of life. These interviews were recorded, transcribed, and distributed to a broad-based reading committee to identify quality-of-life issues. We will use these interviews to compare and identify common themes and really bring some issues to the table for discussion that I don't think have been discussed before. I'd like to mention that the Foundation also operates a national telephone support network. It allows glaucoma patients to make contact with others who face similar challenges. For example, someone might call us and say, "I'm a 45-year-old truckdriver, and I've just been diagnosed with glaucoma. How is the disease going to affect my work?" We can put the caller in touch with people in similar situations. The telephone number for the patient support network is 1(800) 826-6693. It's a great resource.

?  How has the Foundation utilized NEHEP in the past?

And, how does it plan to utilize the program in the future? The NEHEP has been a good resource for us. It has helped us develop collaborations and build partnerships. From NEHEP's conference last year in Hershey, Pennsylvania, we established three or four really viable working partnerships that have helped us to get out our education message. It's really important to know what other people are doing so we aren't duplicating efforts. The NEHEP has been very good about that. For more information on the Glaucoma Research Foundation contact Lisa Wagreich, The Glaucoma Research Foundation, 490 Post Street, Suite 830, San Francisco, CA 94102; (415) 986-3162.

NEHEP Announces Outstanding Achievement Award Program

NEHEP Announces Outstanding Achievement Award Program To encourage the development and implementation of model eye health education programs at the local level, the National Eye Health Education Program announces its new achievement award program for community organizations.

Anyone may nominate local organizations for the award, including organizations that are members or affiliates of Partnership organizations. To be considered, nominated programs must meet at least one of the following criteria:

• Involve community leaders, key intermediaries, and other individuals in the development and implementation of the program.
• Use unique strategies designed to reach high-risk populations.
• Include resources for appropriate referral to the community and/or provide the necessary resources to offer examinations and/or treatment.

Interested individuals should submit a program description of 100 words or less to Kimberly Harley, M.P.H., CHES, NEHEP, 2020 Vision Place, Bethesda, MD 20892-3655. Nominations for the awards will be accepted throughout the year. NEHEP staff will review nominations as they are received and select potential winners; the NEHEP Planning Committee will make the final selections. Winners will be announced in future issues of Outlook and receive a certificate of appreciation.

For more information on NEHEP's achievement award program, contact Ms. Harley at (301) 496-5248.

Screening Without Tonometry . . .

For many community organizations, vision screening at health fairs provides an excellent opportunity to reach people at risk for glaucoma.

But questions arise about the best way to test for glaucoma at these events. Is checking a person's eye pressure with tonometry appropriate? Or, given that high pressure is just one symptom of the disease, does tonometry fail to identify those who have other signs of glaucoma?

When the National Eye Health Education Program (NEHEP) was launched in 1991, its Glaucoma Task Force issued a statement on vision screening.

The task force, consisting of leaders in the field of glaucoma research, recommended visual acuity testing, rather than tonometry, as "the simplest and most practical vision screening program." Visual acuity testing measures how well a person sees at various distances using a standard eye chart.

According to Eve Higginbotham, M.D., a member of the Glaucoma Task Force and its current chairperson, visual acuity testing is preferable to tonometry because it offers a better opportunity to talk to people and educate them about glaucoma.

"The task force issued the statement because it wanted to reaffirm and remind our partners that tonometry is not a reliable tool because intraocular pressure is so variable in people with glaucoma," said Dr. Higginbotham, professor and chair of the Department of Ophthalmology at the University of Maryland at Baltimore.

"The limitations of pressure testing have been in the ophthalmic literature for the last eight or nine years," she added. "But sometimes it takes a while to convince people who have been using something for a very long time that it is not the most effective approach."

The Glaucoma Task Force stressed that people at risk for glaucoma who attend a vision screening should be referred to an eye care professional for a dilated eye examination. Risk groups include Blacks older than age 40 and all people older than age 60.

The recommendation also states that anyone whose visual acuity with corrective lenses is 20/40 or worse should be referred to an eye care professional for further examination.

The task force emphasized that "one-on-one" health education, offering verbal and written information, is the most effective approach to alert people about glaucoma.

To read the complete statement, see the sidebar below.

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In the last issue of Outlook, the caption in a photo accompanying The Links article was incorrect. The corrected caption appears left.

NEHEP Partnership Members