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

The major goal of this project is to increase the number of parents of newborns with sickle cell or other hemoglobin traits obtaining factual, confidential and sensitive counseling. To this end the following objective are established:

1. To develop a state-wide public relations campaign to increase the public knowledge and awareness of sickle cell disease and the need for counseling for sickle cell and other hemoglobin traits.
2. To standardized the training of staff who provide sickle cell trait counseling and to standardize counseling procedures for Louisiana and the trait counseling reporting system.
3. To revise and update at least three trait brochures to reflect current knowledge and to make them easier to read for people with low literacy skills.

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. Revise at least three of the sickle cell and other hemoglobin traits brochures to reflect the latest information and to make them appealing and easy to read.

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 sued 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.

Text of Annotation

This project proposed to increase the number of parents receiving hemoglobin trait counseling. The project will make use of a statewide media campaign 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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