Purpose

Previous work of this collaborative demonstrated the effectiveness of multi-component interventions, including the media - the modern day “talking drum” - in increasing awareness about sickle cell disease (SCD) and trait in the communities most affected. The proposed project aims to strengthen existing partnerships in implementing these interventions and to establish new ones that tie together the Northern and Southern regions of the state. Present endeavors are to enhance informed decision making by individuals affected with sickle cell trait and to improve overall care for individuals with SCD, with a specific focus on emergency department (ED) care.

Challenges

The project previously highlighted community and provider knowledge deficits about the significance of hemoglobin traits, as well as the disconnect between the knowledge that SCD is a serious condition that is genetically transmitted and the failure on the part of individuals to find out about their own trait status. “Talking Drums” was designed to increase follow up with counseling tied with notification of an infant’s hemoglobin trait status. The project’s goal was achieved through partnering with the Newborn Screening (NBS) Program to provide personalized contact with families of identified infants. Significant changes recently occurred in California’s follow up program for hemoglobin traits, necessitating an immediate focus on developing new strategies for partnering in order to maintain the gains that were made. Expanding the strategies to further increase follow up with trait counseling for high risk populations particularly - African Americans and Latinos - is an important focus for the near future. For individuals with SCD, barriers to optimal care are often encountered, particularly in emergency departments. Provider attitudes, limited provider knowledge and limited support for families in their advocacy efforts for their children are challenges that have been cited as contributing to these barriers.

Goals and Objectives

Goal 1: To maintain and extend the gains made that increased participation in sickle cell trait counseling.

Goal 1 will be accomplished by meeting the following objectives:

• Collaborate in organizing a meeting of consumers, providers, policy makers and the NBS program regarding challenges to and successful strategies for providing trait follow up;
• Partner with the NBS Program in providing trait follow up according to the state’s revised protocol in the East Bay region and to evaluate successful strategies for trait follow up;
• Provide education to community providers about the significance of hemoglobin traits.

Goal 2: To build on successful efforts to increase awareness of information about hemoglobin traits and diseases.

Goal 2 will be accomplished by meeting the following objectives:

• Disseminate copies of an instructional video about the significance of hemoglobin traits to communities and health care professionals along with companion printed materials;
• Expand on radio segments and printed materials that encourage individuals in communities most at risk to get tested for their hemoglobin trait status by targeting the disconnect between knowledge and behavior;
• Encourage taking ownership of trait and disease in the community by partnering with a school program, with the goal of creating a model for implementing innovative strategies that enhance an in depth understanding of the experience of living with sickle cell disease.

Goal 3: Improve emergency department (ED) care for individuals with SCD in Los Angeles County and Alameda County.

Objectives to address Goal 3 include:

• Conduct a needs assessment of health care professionals and affected individuals regarding the issues in sickle cell disease care in the EDs in the two counties;
• Utilize quality improvement strategies within individual hospitals to improve the consistency of ED care for sickle cell disease in the Northern and Southern regions of California;
• Provide education about sickle cell disease to ED staffs;
• Continue to offer classes and workshops for families that teach active coping strategies, with added attention to developing advocacy skills for interfacing with ED staffs.

Methodology

The Talking Drums project will work collaboratively with diverse community agencies, the Comprehensive Sickle Cell Center, and the California NBS Program to implement multi-component interventions. A partnership will be developed with the Sickle Cell Disease Foundation of California in Southern California with the aims of collaborating on a statewide conference that will examine issues, concerns and successful strategies in improving trait follow up services for families and to improve sickle cell disease care provided in emergency departments. The project will function cooperatively with the National Coordinating and Evaluation Center and the other community grantees in information sharing, evaluation activities and development of educational materials.

Evaluation

Quantitative and qualitative strategies will be used to assess outcomes. The effectiveness of the outreach activities to improve the number of individuals who follow up with trait counseling will be tracked. Community surveys and focus groups will provide information regarding the reach and impact of the media campaign. Needs assessments conducted with health providers and individuals directly affected by SCD will establish the foundation for the ED interventions. Provider and family knowledge, provider attitudes, and family advocacy efforts will be assessed following participation in the educational activities.

Experience to Date

In the past year, the Talking Drums Project achieved its goals of establishing productive community and professional partnerships, with resulting increases in follow-up for sickle cell trait counseling; enhancing services for families of children with SCD; and creating new educational materials. In recent years, the Sickle Cell Center Community Advisory Committee hosted workshops and forums about SCD for families, professionals and the community. Its officers participated in national forums sponsored by NIH and MCHB focused on improving quality of care and quality of life in SCD. The Northern California Comprehensive Sickle Cell Center, continuously funded since 1972, was re-funded for a five year cycle in 2003. Another partner, the African American Wellness Project, mounted a successful media campaign in the Bay Area to raise awareness about SCD and trait in 2002-03.

Text of Annotation

The Talking Drums Project will build on existing partnerships and establish new ones to increase awareness of SCD in the community and effectively tie trait notification with follow up for counseling. Emergency care for individuals with sickle cell disease will be improved by piloting an innovative program of provider education and supporting patients and families in self-advocacy. Program strategies include a media campaign and using a quality improvement framework to improve the consistency of SCD emergency care.

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