Purpose

The purpose of the proposed project is to develop and implement a community-based demonstration project that will provide an coordinated system of services to include secondary notification, education, counseling, extended family testing, follow-up and support services for infants and families of infants diagnosed as carriers of sickle cell disease or other abnormal hemoglobins.

Collaboration will take place with the National Coordinating Center, the state sickle cell disease program, comprehensive sickle cell center and a network of community based primary care providers and sub-specialists. In addition, OSCHA plans to increase the genetic literacy of the public and health professionals who service the targeted population, awareness and support in the community through social marketing.

Challenges

The project will address the following issues:

1. Lack of accessible, coordinated and culturally sensitive education, genetic counseling and extended family testing and support for trait carriers. This issue relates to the need to reduce the gap that exists in follow-up for trait carriers who are initially diagnosed in the newborn screening process, but are left to seek their own education, counseling, confirmatory and extended family testing.

2. The need for increased professional education that will improve the effectiveness of Health professionals who service the targeted population. This issue relates to the need to increase the knowledge base of health care professionals which will allow them to perform optimal quality care with sensitivity for persons with Sickle Cell Disease and Trait, resulting in patient and family empowerment actively participating in a provider/consumer collaborative relationship.

Goals and Objectives

Goal I

To expand follow-up to parents and families of newborns diagnosed as carriers of sickle cell trait and other abnormal hemoglobin that are lost-to-follow-up and non-compliant to the existing system, as well as newly identified.

Objective I

To work with existing systems, as a secondary link to notification for the successful follow-up to parents of infants and families identified.

Goal II

To increase access to education, testing, counseling and follow-up to parents of infants diagnosed as carriers of sickle cell disease and the extended family using aggressive outreach efforts.

Objective I

To identify community satellite sites, in the specified catchment areas that will serve as sites for accessible outreach education for families identified.

Objective II

To use technology as a tool for outreach to families identified in the catchment area.

Objective III

To provide or make available pre-testing education to expectant mothers, prior to genetic testing and post testing at the offices of primary care physicians and OB/GYNs’, that will increase the compliance rate of follow-up by parents of infants who may be identified with sickle cell trait.

Objective IV

To work with the National SCD Coordinating Center and other funded community-based organizations to assist in the collection of information, data and standardization of education and counseling.

Objective V

To expedite the continuity of follow-up to parents and extended families of infants diagnosed with the carrier state through extended family testing, counseling and referral.

Goal III

To increase the genetic literacy of the public, health care providers and public health officials through provision of multi-level education.

Objective I

To provide innovative materials and approaches to sickle cell training and education.

Objective II

To develop a needs assessment to determine the best approach to education for the health professional.

Objective III

To refine education to the health professional using the method of web based education.

Goal IV

To develop innovative approaches for education and increased public awareness of Sickle Cell Disease using Social Marketing concepts.

Objective I

To assist the community in understanding the sickle cell phenomena and the need for support for individuals and families.

Goal V

To provide support to the needs of families identified with sickle cell trait through the local self-help groups and other support systems.

Objective I

To increase access to sickle cell services and empowerment through peer education and support methods.

Methodology

The planned approach will focus on Franklin and the contiguous counties as a specified catchment area for expanded and enhanced service delivery. OSCHA will collaborate with existing systems, partners and agencies to identify those individuals who have been lost-to-follow up, non-compliant or newly identified. Upon identification, OSCHA will take an aggressive approach to education, testing and follow-up to persons identified. Education will involve outreach efforts that are comprised of web-based education to the lay and professional communities, workshops and other methods to increase the genetic literacy of the targeted population. OSCHA will also move forward with a continuum of care and follow-up for the family by offering a designed testing site for the extended family. In efforts to bring a greater understanding and awareness to this disease, social marketing efforts will be developed and implemented.

Evaluation

Evaluation will be quantitative, objective and subjective and use a multi-level approach which includes parameters of the target audience, service content, achievement of projected units and consumer response.

Experience to Date

Ohio Sickle Cell and Health Association is a 24 year old community based organization providing culturally relevant and quality services to the population at-risk and affected by Sickle Cell Disease in Columbus, Ohio. OSCHA has been instrumental in the provision of services for Sickle Cell Disease in the following ways:

• Advocated for the development of Newborn Screening in Ohio.
• Developed innovative approaches for art and therapy for sickle cell children.
• Helped to encourage legislation that exists for children with SCD to receive services from the Bureau for Children with Medical Handicaps.
• Coordinated and hosted the 27th Annual Convention of the Sickle Cell Disease Assn. of America.
• Grantee for the SPRANS/Genetic Services Sickle Cell Disease and Newborn Screening Program

Text of Annotation

The purpose of the proposed project is to provide a coordinated service approach for infants and families diagnosed with sickle cell trait. Services to be provided will be quality, culturally relevant, and innovative approaches for multi-level education to the targeted population, the organizations and institutions who serve them. Aggressive follow-up education, testing, counseling and support efforts will involve the collaboration of existing systems, organizations and service providers recognizing the need for a structured organized approach.

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