Problem

58,000 people in our region have a hemoglobin trait - 16% surveyed knew their trait status. Only 1/3 of families identified through Newborn Screening (NBS) have easy access to face-to-face trait counseling. Patients with sickle cell disease and their providers voiced concerns about emergency care.

Goals and Objectives

Goal 1: Build on the already established exchange between partners and other local, state and national agencies to increase awareness of hemoglobin traits and diseases in the community.

Objectives:
1. Collaborate in organizing annual meetings of consumers; providers; policymakers; and the NBS program regarding needs, challenges and successful strategies for supporting individuals and families affected by SCD and hemoglobin traits;
2. Contribute to community organization .capacity building, with full board functioning and
501 c3 status of a sickle cell group attained by FY2;
3. Create a broad marketing strategy to encourage community testing for hemoglobin trait status, with annual increases in percent of the community tested.

Goal 2: Increase access to sickle cell trait testing and counseling resulting in an overall focus on improved health
Objectives:
1. Partner with the NBS program to deliver education to community providers and face-to-face trait counseling to families identified with hemoglobin traits according to the NBS protocol in the San Francisco Bay Area region, with an annual increase in geographic regions served.
2. Provide community outreach that targets increasing awareness of and participation in hemoglobin trait testing and counseling within the context of overall improved health, with annual increases in the number of community members reached.

Goal 3: Establish best practices that improve emergency department care for individuals with SCD in the state of California
Objectives:
1. Improve access to standards for SCD care provided in emergency departments (ED) in the Northern and Southern regions of California with annual increases in EDs that incorporate SCD care in continuous quality management programs.
2. Provide education about SCD to emergency department staffs, beginning with establishment of telehealth systems for education in FYI and following with annual workshops;
3. Offer annual workshops for families and patients that teach active coping strategies for disease management and advocacy skills for interfacing with emergency staffs.

Methodology

The California sickle cell statewide conference is the first of its kind. We will again bring together the NBS program and the Northern and Southern regions of the state to collaboratively create the yearly conference themes, objectives and content. We will expand the provision of face-to-face sickle cell trait counseling to a larger geographic region in this diverse state. Our partners with SCD will "put a face" on the issue of SCD in the community and will mentor youth with SCD in their advocacy for their own health and in career and academic planning. Our student partners will channel their creative energies into crafting videos, radio spots and photo exhibits that raise awareness about SCD and trait. The TD Project will sponsor special community events coinciding with local and national initiatives that place awareness of SCD and hemoglobin traits in the context of improving overall health. The Project will use telehealth strategies to educate emergency care providers and will disseminate findings at national conferences and in peer-reviewed journals. We will contribute to building the capacity of the CAC and provide for the sustainability of the collaborative by working cooperatively to pursue additional funding for our patient advocacy and education. We also aim to institutionalize improved SCD patient care by improving consistency with the use of clinical care protocols as part of the continuous quality improvement programs of the participating EDs. COORDINATION: The TD Project partners include four community organizations focused on ethnic minority health and on SCD, a hospital, a Sickle Cell Center, the state NBS Program, and a high school. Each partner provides in-kind salary or concrete support to further the goals of the project. The TD Project functions cooperatively with these partners, other community grantees and the Project Coordinating Center in information sharing, evaluation activities and developing educational materials.

Healthy People 2010 Goals

Enhances service systems for children with special health care needs; enhances capacity for essential public health services in community organizations.

Evaluation

Conference attendees rate understanding of trait and SCD, and quality of presentations. Number of individuals outreached to are tracked. Improvements in targeted awareness, support, and knowledge about SCD and trait are assessed against baselines from surveys and focus groups. Improvements in provider knowledge, attitudes and consistency in care; enhanced family self-advocacy; and decreased family concerns with ED care are evaluated post interventions in surveys and chart audits.

Key Words

Access to Health Care, African Americans, Community Based Health Education, Genetic Disorders, Newborn Screening, Sickle Cell Disease, Health Promotion, Professional Education in Chronic Illnesses and Disabilities

Text of Annotation

The Talking Drums Project builds on existing community, Title V, research, and medical partnerships to increase awareness of sickle cell disease (SCD) and hemoglobin traits; and access to trait testing and counseling, within the context of overall improved health. Emergency care for SCD is improved by implementing an innovative program of provider education and support for patients and family self-advocacy. Program strategies include follow up on our survey about community knowledge of SCD, the largest conducted to date, and follow up on the only survey of knowledge and attitudes about emergency care for SCD that assesses providers and patients concurrently. The project features a broad marketing strategy and community capacity building.

^ TOP ^
Back to Project Grantees.

Copyright © 2003, Sickle Cell Disease Association of America