IBE Chapter Association, Guatemala
Project: Production of CDs in a range of minority languages to educate those with epilepsy, and who are unable to read, about the condition

Guatemala covers 110,000 square kilometers and includes a great diversity of ethnic groups and languages. The official language is Spanish but half the population do not speak it, and the general income per capita is one of the lowest in Latin America.

As you might guess, the segment of the population that does not speak Spanish is also illiterate. Information leaflets provided for the general public are in Spanish and are therefore not suitable. This is true for all educational areas and not just the neurological field.

The project drafted by the association proposes that the education materials offered will be in the community languages of specific ethnic groups target by our project. The material informing them about epilepsy will be offered in their language either through cassettes or CDs. What is important is that in spite of low income most the families and communities own a radio or radio cassette, or a CD player. Our organization has the capacity top provide most of the practically isolated communities of Guatemala with the proper information about epilepsy.

Problems to be addressed.
The population targeted is approximately half of the total population of Guatemala; that is approximately 6 million persons who will be in contact with our programs, either by direct contact or through local and national broadcasting and information radio stations.

Potential challenges are the remoteness of some areas that do not receive radio signals, and the difficulty in translating the educational material into the 22 different languages and ethnic groups that we have in Guatemala.

The way to overcome these challenges is to produce audio cassettes and audio CD that could be played on mass transmission radios, or individually owned cassettes and CD players. Cassette or CD players could also be used by community leaders who could program meetings with groups of people who together could listen to the materials and learn the correct information about epilepsy.

Objectives of the program:

• Translate into audio material lessons of Epilepsy in 12 Mayan languages and the Garifuna language.
• Work together with leaders of the main ethnic communities for simultaneous translation.
• We will measure the effect of our efforts through follow up visits to the communities targeted, to detect whether there has been a change in attitudes toward people with epilepsy and their families.
• It will be important to monitor evidence of stigma, incorrect concepts about the origin of epilepsy, and also to monitor the antiepileptic drugs used and their availability.
• Another very important issue to follow is prevention methods and the modification of risk factors.

All those involved in the project work on a voluntary basis. It is important to identify community leaders and explain to them the purpose of the program, and the responsibility in sharing and spreading information about the project.

It is important that the local community leaders and the communities are committed to the project and realise the value it has for bettering the health of people with epilepsy, which affects 2.5% of the population of Guatemala.

To some extent this is an international program because in the northern part of Guatemala and south of the republic of Belize there are dense communities of forest dwelling people who are related to the same ethnic groups in Guatemala and they are called Garifuna people. Their language is a mixture of Spanish, French, English and other African roots. The material has been translated into their language but difficulty has been experienced in circulating the material due to economic factors. We hope to overcome this difficulty through the funds made available by the Promising Strategies Program.