Purpose

Establish a follow-up component of Arkansas's sickle cell disease screening program, including community-based hemoglobinopathy counseling, education, and support services.

Challenges

Through the newborn screening program, each year hospitals in Arkansas identify approximately 700 children with sickle cell trait. Due to the lack of a follow-up program, many of the families of these children do not understand the implications of the testing. Many of the children who have sickle cell disease have difficulty accessing community-based prevention and intervention programs. Families do not have access to education and support that is needed to cope with this chronic condition.

Goals and Objectives

The project goal is to improve the lives of children and families affected by sickle cell disorders through newborn screening follow-up and referrals, education, and family support. The objectives are to improve the lives of children with sickle cell and their families by: (1) expanding the newborn screening follow-up to include education about sickle cell trait and hemoglobinopathy testing to 500 families of children born with sickle cell trait each year; (2) training 70 health care professionals each year; (3) providing sickle cell disease education to 500 persons annually; and (4) offering family support to 100 families annually.

Methodology

The project will utilize various collaborators to perform the activities of the initiative. Partners for Inclusive Communities (Partners) will coordinate the work of 4 sickle cell counselors and staff from the state Title V program to educate families of newborns with sickle cell trait and the general public. The Arkansas Department of Health will contact families of children who test positive to enlist them in the activities of the project. The sickle cell program at Arkansas Children's Hospital will provide education and consultation to health care providers.

Evaluation

The project will maintain counts of participants in each of the activities. The evaluator will collect evaluations and pre-post tests from trainings. Using focus groups and surveys, the project will conduct participatory action research to assess the quality and effectiveness of the education and support activities. The evaluator will use Chi square analysis to determine its impact on the incidence of sickle cell trait. The project will cooperate with data collection activities of the National Sickle Cell Center.

Experience to Date

Partners has a mission of improving the lives of people with chronic conditions and has conducted sickle cell education and support groups for ten years and has worked with the other project collaborators during that time.

Text of Annotation

"Living Well with Sickle Cell" will establish a follow-up program for newborns in the state of Arkansas who test positive for sickle cell trait or disease. Although approximately 700 children are identified with sickle cell trait each year, there is no program of follow-up. This project will improve the lives of those children and their families by providing family testing, education, and support, as well as education and consultation for providers. The project will evaluate the process used to achieve the goals and the project outcomes.

Key Words

Sickle Cell Disease, Screening, Training, Parent Support Groups

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