Purpose

The Sickle Cell Disease Foundation of California (SCDFC) proposes a model disease education and psychosocial case management program aimed at providing additional support to the families of infants and young children ages 0 to 3 in Los Angeles County, California. Specifically, the SCDFC proposes to improve the continuity of care for infants and young children with sickle cell disease and to improve the ability of parents, guardians and other family members to care for and nurture infants and young children with sickle cell disease.

Challenges

The program will decrease barriers to care for infants and young children with sickle cell disease, address issues related to limited family knowledge of sickle cell disease, and thereby improve long-term health outcomes for these children. It will also improve relationships among patient families, community-based resources, primary care physicians in the community, California Children’s Services Sickle Cell Disease Centers, and California’s Newborn Screening Program.

Goals and Objectives

Goal #1: Enhance the continuity of care for infants and young children with sickle cell disease ages 0 to 3 in Los Angeles County, California.

• Objective 1.1: Increase the knowledge of health care providers in the community regarding the special needs of young patients with sickle cell disease, particularly psychosocial challenges in addition to the treatment of sickle cell disease, the importance of hemoglobin trait counseling, and where to refer young patients with sickle cell disease and their families for medical and psychosocial services.
• Objective 1.2: Increase the knowledge of community healthcare providers regarding the programs and services available at the SCDFC and other community agencies, and how to access these resources.
• Objective 1.3: Improve patient access to well child care and specialty care services, including immunizations and prophylactic penicillin treatment.

Goal #2: Enhance the ability of parents, guardians and other family members to care for and nurture infants and young children with sickle cell disease ages 0 to 3 in Los Angeles County, California.

• Objective 2.1: Increase parent/guardian/family knowledge of basic pathophysiology of sickle cell disease, warning signs of disease complications, and appropriate home health maintenance and preventive care.
• Objective 2.2: Broaden parent/guardian/family knowledge of other resources in the community and how to access these resources.
• Objective 2.3: Improve patient compliance with well child care and specialty care services, including immunizations and prophylactic penicillin treatment.

Methodology

Outreach: The SCDFC will work collaboratively with the California Newborn Screening Program and the local California Children’s Services Sickle Cell Disease Centers to reach approximately 160 families.

Strategies: The SCDFC will provide psychosocial and disease knowledge assessments to each participant family, and each family will be invited to participate in a series of workshops and one symposium. Each family will receive case management services as needed. The SCDFC will also offer three workshops for primary care physicians who care for children sickle cell disease.

The SCDFC maintains strict confidentiality policies and procedures that ensure the privacy of all our client information.

Evaluation

Evaluation for the proposed program will be conducted by an outside evaluator, Nunn Consulting, Inc. It will be a multi-part data collection and analysis effort that will provide feedback to program staff, funders and administrators regarding various component and aspects of the program. The evaluation will include both process and outcome evaluation data.

Experience to Date

The SCDFC has 45 years of successful experience providing services to individuals with sickle cell disease and their families. The SCDFC has been a California State Approved Sickle Cell Education and Counseling Center since 1976. It was also awarded the California State Contract for Hemoglobin Trait Follow-Up from 1991 to 2000, providing service to over 40% of the State’s newborns identified with a hemoglobin trait. In the Spring of 2002 the SCDFC successfully partnered with Centinela Hospital Medical Center to create the Comprehensive Adult Sickle Cell Disease Institute.

Text of Annotation

The Sickle Cell Disease Follow-Up Program will provide a model disease education and psychosocial case management program aimed at providing additional support to the families of infants and young children ages 0 to 3 in Los Angeles County, California. The SCDFC proposes to improve the continuity of care for infants and young children with sickle cell disease and to improve the ability of parents, guardians and other family members to care for and nurture infants and young children with sickle cell disease. The program strategies include family psychosocial and disease knowledge assessment, disease education workshop and a symposium, psychosocial case management services and provider education.

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