PROBLEM
A major challenge of this project is to determine the efficacy of information being disseminated throughout the service population. Preliminary findings suggest that many parents of newborns diagnosed with sickle cell trait have received adequate counseling. However, other studies reflect that these parents did not convey this information to their child. Consequently, the adolescent trait population has little or no knowledge regarding their sickle cell trait status. The community based newborn screening project has been very successful in its efforts to allow parents of adolescents to identify other family members or individuals who may require sickle cell screening. Information retrieved from counseling sessions will be utilized in various ways. This data will provide detailed information regarding trait clients as well as assist in assessing the long term effectiveness of newborn screening. The data extracted will be thoroughly analyzed by a statistician from the University of South Alabama Department of Mathematics and Statistics.
GOALS & OBJECTIVES
The major goal of this project is to identify individuals who would benefit from genetic counseling. Adolescents and young adults are the targeted population. Testing for abnormal hemoglobin is best coordinated with comprehensive health screening and counseling programs.
In an effort to meet the ever changing demands of this rapidly increasing population, the following objectives have been developed. Objective 1: To enhance and expand the counseling, education, and screening programs utilizing systematic methods of evaluation. Objective 2: To expand the existing newborn counseling program by increasing the rate of attendance. Objective 3: To maintain a tracking system which focuses on the adolescent population who yield positive results but have not received any subsequent counseling. Objective 4: Needs assessment data retrieved from individuals diagnosed with sickle cell disease will be referred to case management for appropriate follow-up. Objective 5: To provide quality sickle cell testing conducted by two laboratories directly linked for the purpose of establishing an accurate diagnosis of hemoglobinopathies. Objective 6: To provide early detection of significant delays in development for infants with sickle cell disease.
METHODOLOGY
The Sickle Cell Disease Association of America – Mobile Chapter (SCDAA-MC) community based newborn screening project continues to focus on efforts that will enhance the establishment of a comprehensive system for sickle cell trait counseling. Innovative programs are being developed and implemented in an effort to expand the existing program.
Psychological studies will be conducted to assess the impact of parenting stress associated with mothers and their diseased infants. The study will also address the developmental milestones achieved by the child. SCDAA-MC will partner with the University of South Alabama Department of Psychiatry to accomplish this objective. The SCDAA-MC will continue to intensify efforts that will improve upon the overall quality of counseling services.
COORDINATION
Counseling is provided for all parents of newborns identified with positive test results. Many of these referrals are obtained through the Alabama Newborn Screening Program. Approximately 110 parents of newborns have received counseling during the current grant cycle. A pre and post-test was administered in an effort to access the level of SCD knowledge for care takers before and after a counseling session.
EVALUATION
ANNOTATION
The collaborative relationship formed with the University of South Alabama Comprehensive Sickle Cell Center will allow for a continued focus on efforts that will enhance the knowledge of other health care providers administering services to the sickle cell disease population.
KEYWORDS
Sickle Cell Disease, Counseling, Newborn Screening, Education, Mental Health
|
