Purpose

The purpose of this project is to utilize a sustained media campaign as a mechanism to provide state-wide sickle cell and other hemoglobin trait counseling.

Challenges

State funding and state privacy issues create road blocks to providing trait counseling to those who need it. This project is an attempt to get around these blocks.

Goals and Objectives

This project goals and objectives stem directly from the special circumstances of our state and our approach to overcome the barriers of presenting trait counseling in Louisiana. They are:

Goal I

Develop a state-wide public education campaign aimed at creating awareness of sickle cell disease and the need for counseling for sickle cell and other hemoglobin traits.

Objectives

1. Develop and carry out two statewide media events for recent and expectant parents by the end of year one.
2. Develop and distribute one trait counseling informational leaflet for recent and expectant parents by the end of year one.

Goal 2

Develop a standardized trait counseling program for the state of Louisiana

Objectives

1. Increase the number of parents of newborns with hemoglobin trait being counseled by 30%.
2. Develop and distribute Louisiana hemoglobin trait counseling manual by the end of year 1.
3. Standardize trait counseling training for sickle cell programs providing trait counseling by the end of year 1.
4. Standardize trait counseling reporting for all sickle cell programs in Louisiana by the end of year

Methodology

The Sickle Cell Center will work with the State Sickle Cell Foundations to:

1. Create and implement a media campaign to inform the public about the need for sickle cell and other hemoglobin traits counseling and to direct them to their local Sickle Cell Foundations.
2. To work with the State Genetics Program to integrate trait counseling into the already existing newborn screening process.
3. To develop standardized trait counseling training and procedures for Louisiana.
4. Create a standardized reporting system.
5. Develop an easy to read pamphlet on reasons why trait counseling is important.

Evaluation

The project will look at the number of parents counseled during the year before the project and compare it to the first year after the project. Pre and post tests will be used before and after counseling sessions to assess learning. We will also keep records on the number of media events, number of speaking engagements and health fairs attended as well as the number of brochures distributed.

Experience to date

Five of the six social workers in our state were trained for single gene counseling at the Mobile Sickle Cell Center. A public education campaign has been planned and will be carried out in September 2003. This will include cable tv and radio advertisements and a day at the mall throughout the state. The slogan for the campaign is “Check Your Trait”. Three trait brochures were revised to up date them and make them more attractive and easier to read. They are AS, AC and AE. They are also individualized (i.e name, address and phone number) for each region.

Text of Annotation

This project proposes to increase the number of parents receiving hemoglobin trait counseling. The project will make use of a statewide public education to inform parents of infants detected with sickle cell or other hemoglobin trait where they can be counseled and why it is important.

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Copyright © 2003, Sickle Cell Disease Association of America