Purpose

The Sickle Cell Disease Association of America of Philadelphia Delaware Valley Chapter (SCDAA/PDVC), a community-based social service organization, proposes a comprehensive, team-based program in collaboration and per agreement with the Comprehensive Sickle Cell Centers in Philadelphia (Comprehensive Centers) at The Children’s Hospital of Philadelphia (CHOP) and St. Christopher’s Hospital for Children (St. Christopher’s).Through this agreement and collaboration, parents of newborns with sickle cell disease (SCD) and sickle cell trait (SCT), community primary care providers (PCPs) and the diverse populations affected by SCD/SCT will be educated and counseled about SCD/SCT. SCDAA/PDVC will also coordinate medical care for newborns with SCD with the above-mentioned centers, provide ongoing support and serve as a resource for parents of newborns with SCD from birth to adulthood, PCPs and the community at large.

Challenges

The racially, economically and culturally diverse population of the Philadelphia/Delaware Valley includes individuals with African, Mediterranean, Middle Eastern, Indian, Caribbean, and South and Central American ancestry, ethnic groups with a high prevalence of SCD/SCT. This program must have elements that will reach each of these groups.

Increasing knowledge of SCD/SCT among PCPs in the Philadelphia/Delaware Valley is challenging as these health professionals are scattered throughout the region and many provide care for only a few SCD patients. The major challenge in reaching this group is to create an atmosphere whereby they will understand the advantage of coordinating their patients’ care in association with the Comprehensive Centers.

Goals and Objectives

The SCDAA/PDVC will:

• Offer genetic counseling, education, case management, outreach and additional testing referrals to families and extended families of newborns with SCD.
• Offer genetic counseling, education, case management services, as needed, outreach and additional testing referrals to families and extended families of newborns with SCT.
• Locate and track families of newborns with SCD lost to follow-up at the Comprehensive Centers.
• Develop culturally competent educational materials and uniform counseling protocols to provide genetic counseling and education.
• Provide education about SCD/SCT to PCPs.
• Raise awareness and provide education within the diverse populations affected by SCD/SCT through multicultural media outlets.
• Maintain a comprehensive database of individuals with SCD/SCT diagnosed through the Commonwealth of Pennsylvania, Department of Health Title V and Newborn Screening Program.

Methodology

The SCDAA/PDVC will utilize a comprehensive team-based collaborative program in conjunction with the Comprehensive Sickle Cell Centers to develop strategies, educate and follow-up with families of children born with SCD/SCT. A strong emphasis will be placed on culturally competent education and counseling. SCDAA/PDVC will educate PCPs by collaborating with the Comprehensive Centers to provide education and training about SCD/SCT and developing and providing PCPs with both currently available and newly developed printed information.

Evaluation

Goals and objectives will be assessed utilizing quantitative and qualitative indicators and outcomes. Assessment tools will include: a Management By Objectives form to document, measure and track all SCD/SCT educational, counseling, referral and outreach activities for parents, extended families, PCPs and the community as they relate to program goals and objectives; records of attendance at community/outreach events and educational seminars; and tracking of difficult to locate affected families that are located and counseled.

Experience to Date

SCDAA/PDVC is a comprehensive social service agency that, for over 20 years, has offered services that enable persons with SCD to become productive members of society. Some accomplishments to date have been:

• Collaboration with the Comprehensive Centers to locate, counsel and educate 75-100 families of newborns annually with SCD.
• Implementing support groups, such s The Parents Network, which provides social and emotional support to parents and guardians caring for children with SCD.
• Providing seminars to raise awareness and educate the community, clinicians and families about SCD/SCT.
• Collaboration with the Penn-Jersey Chapter of the American Red Cross, CHOP and St. Christopher’s to implement a blood donor program initiative for children with SCD.

Text of Annotation

The SCDAA/PDVC proposes a collaborative program to educate and counsel parents of newborns with SCD/SCT, PCPs and the community about SCD/SCT through culturally competent counseling, materials and trainings to facilitate the educational process and enhance knowledge of SCD/SCT.

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