Problem

Sickle cell disease and sickle cell trait affect mostly African Americans, Hispanics and Southeast Asians in N.C. To prevent morbidity/mortality, newborn screening, parent education, medical care, and penicillin are required. Genetic counseling and education are important for parents and providers

Goals and Objectives

Goal 1: Reduce morbidity and mortality of 50 newborns through identification, confirmatory testing, comprehensive case management, plans of care with follow-up and coordination with providers by 3/31/2008.
Objective 1: Provide comprehensive case management, develop care plans, and conduct follow-up of 90% of (50) newborns with SCD through 3/31/2008. (20 by 5/30/2006; 20 by 5/30/2007; 10 by 12/31/2007).

Goal 2: Provide home teaching for parents of 50 newborns with SCD on disease management, care of infants and importance of compliance with medical care by infant's age of 12 months.
Objective 1: Conduct home teaching to increase parents' knowledge of disease management, health maintenance skills, prevention, safety and medical compliance for 60% (50) parents of newborns with SCD by age 12 mos.
Goal 3: Translate education and counseling materials on SCD for South East Asian and Hispanic parents of newborns.
Objective 1: Provide 8 translated educational materials for Southeast Asians and Hispanics families by 10/31/2007. (4 by 10/31/2005; 2 by 4/30/2006; 2 by 10/31/2007).
Objective 2: Produce video on "The Best Defense" in Spanish by 10/31/2007.

Activities / Methodology

Newborns in N.C. are screened at birth for SCD. Sickle Cell Disease Association of the Piedmont provides follow-up services to reduce morbidity/mortality of these newborns. An estimated 50 newborns will be referred to SCDAP over 3 years. After confirming a diagnosis, SCDAP nurses conduct: genetic counseling of parents, case management, medical care referrals, home teaching and support groups for parents. 200 of the 600 parents of newborns referred with trait will receive face to face genetic counseling; another 400 will be notified of results and asked to access a web-based interactive learning tool for education. Education of parents and providers will be enhanced by developing a parents' newsletter that can be accessed by website or mail; developing an e newsletter with links to SCD updates for providers; and producing translated educational materials & a video for Hispanic and South East-Asian parents.

Healthy People 2010 objectives:
(1) Related to Objective 16.23. Increase the proportion of Territories and States that have service systems for Children with Special Health Care Needs to 100 percent. I
(2) Related to Objective 16.23: Increase the proportion of States and jurisdictions that have service systems for children with or at risk for chronic and disabling conditions as required by Public Law 101-239.
(3). Related to Objective 23.11 (Developmental) Increase the proportion of State and local public health agencies that meet national performance standards for essential public health services.
(4). Related to Objective 23.15 (Developmental) Increase the proportion of Federal, Tribal, State, and local jurisdictions that review and evaluate the extent to which their statutes; ordinances, and bylaws assure the delivery of essential public health services.

Coordination

SCDAP coordinates data and reports to the State Program and NCEC. Newborn care is coordinated with local providers and comprehensive centers with penicillin follow-up.

Evaluation

EVALUATION involves assessing the impact of immediate retesting, case management, care coordination and parents' management skills on newborn morbidity. Pre and post tests will be used to assess knowledge gain by trait parents. Teaching evaluation and knowledge tools will indicate parents' competencies in newborn management. The project will show that community-based centers can effectively coordinate the care of newborns with SCD.

Key Words

Access to health care, Case management, Infant morbidity, Counseling, Sickle cell disease

Annotation

Sickle Cell Disease Association of the Piedmont coordinates services for newborns with SCD through retesting, genetic counseling, case management and medical care at local and tertiary centers. Home teaching for parents and support groups are key to reducing morbidity. Translation services and educational materials for Hispanic and South East Asians parents of newborns will be provided.

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