National Coordinating and Evaluation Center
Children's Hospital Medical Center of Northern California (Oakland, CA) Print

Children’s Hospital and Research Center
at Oakland

Project Title: Talking Drums II: Using the Power of Communication to Improve Care Provided to Individuals Affected by Sickle Cell Disease and Trait
Principal Investigator/Program Director: Marsha J. Treadwell, Ph.D.
Organization: Children’s Hospital and Research Center at Oakland
Address: 747 52nd Street, Oakland, CA 94609
Contact Person: Eileen Murray or Poppy Dere
Phone: 510.428.3452 or 510.428.3691
Fax: 510.597.7166
E-mail Address: This e-mail address is being protected from spam bots, you need JavaScript enabled to view it or This e-mail address is being protected from spam bots, you need JavaScript enabled to view it

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.

 

Welcome to the website of the National Coordinating and Evaluation Center- SCDAA for the Sickle Cell Disease Newborn Screening Program. Please take a moment to read the following statement regarding policy, confidentiality, and disclaimers. Once you click your acceptance below, you will be free to navigate throughout the site. Thank you for your cooperation, and enjoy your visit!

TERMS AND CONDITIONS OF USE OF SICKLECELLDISEASE.NET

AGREEMENT

BY ENTERING THE NCEC-SCDAA SITE, YOU ACKNOWLEDGE AND AGREE THAT YOU HAVE READ AND UNDERSTAND THESE TERMS AND CONDITIONS OF USE OF SICKLECELLDISEASE.NET, THAT THE PROVISIONS, DISCLOSURES AND DISCLAIMERS SET FORTH BELOW ARE FAIR AND REASONABLE, AND THAT YOUR AGREEMENT TO FOLLOW AND BE BOUND BY THEM IS VOLUNTARY AND IS NOT THE RESULT OF FRAUD, DURESS OR UNDUE INFLUENCE EXERCISED UPON YOU BY ANY PERSON OR ENTITY. YOU ALSO AGREE TO HOLD NCEC AND ITS GRANTEES, AND EACH OF THEIR OFFICERS, DIRECTORS, MEMBERS, AND AGENTS HARMLESS FROM ANY CLAIM, COMPLAINT OR DAMAGE ARISING OUT OF OR IN CONNECTION WITH YOUR USE OF THE SITE.

SUMMARY OF IMPORTANT LEGAL INFORMATION

The sicklecelldisease.net website (the "Site") is produced for the National Coordinating and Evaluation Center (NCEC) -SCDAA, the grantees participating in the Sickle Cell Disease Newborn Screening Program and their partners. All use of the Site is subject to the Terms and Conditions set forth below. By entering and using the Site, you acknowledge that you have read and understood such Terms and Conditions and that you agree to abide by them. The Site is designed for informational and educational purposes only. NCEC does not endorse, guarantee, warrant, or recommend any products or services discussed or advertised on the Site or linked from the Site. The NCEC-SCDAA retains all copyrights and other proprietary rights in or relating to any content, including any software or educational materials, provided on the Site. You may download and print a small number of copies of the content for scientific or educational uses. You may not sell, transfer, reproduce, transmit, distribute, perform or display such content for any commercial purpose without the express consent of the NCEC-SCDAA.

PRIVACY POLICY NCEC-SCDAA provides the following privacy policy (the "Privacy Policy") in order to demonstrate our firm commitment to privacy. The Privacy Policy may be amended from time to time. The NCEC home page will indicate the date that the Privacy Policy was most recently updated.

a. Collection of Personal Information. NCEC -SCDAA may ask for information about our users at the point of downloading educational materials. This information tells us about the types of people (e.g., providers vs. patients, grantees vs. nongrantees) who use the Site and helps us in the development of materials for our grantees and their clients.

b. Use of Personally Identifiable Information. NCEC-SCDAA will not sell or otherwise transfer or disclose personally identifiable information to third parties without the user's prior consent except as may be required by federal, state or local law, or by exigent circumstances. NCEC-SCDAA also may use your profile information on an aggregate basis -- without personal identifiers -- to develop and display new features and content for the Site, and to provide others with aggregate information about our users and the usage patterns of the Site. NCEC-SCDAA also may perform statistical analyses of user behavior (on a de-identified aggregate basis) in order to measure interest in and use of the various areas of the Site.

c. Retention of User Information. It is not possible for a user to delete his or her profile from our database, nor is it feasible to delete all traces of a user's activity in the system. Messages posted to a forum are examples of user activities that are not feasible to delete.

d. Voluntary Disclosure of Personally Identifiable Information on Forum Boards. Users should be aware that when they voluntarily disclose personally identifiable information (for example user name, email address) on an Interactive Area of the Site, that information, along with any substantive information disclosed in the user's communication, can be collected and correlated and used by third parties and may result in unsolicited messages from third parties. Such activities are beyond the control of the NCEC and the NCEC is not responsible for the discoverability of any user's identify by methods beyond our control.

e. Cookie Technology. NCEC collects non-personal identification information through the use of "cookie" technology and/or Internet Protocol ("IP") address tracking. Cookies are small text files a website can use to recognize repeat users and facilitate the user's ongoing access to and use of the site. Non-personal identification information might include the browser used by the user, the type of computer, the operating systems, the Internet service providers and other similar information. The NCEC system also automatically gathers information about the areas the user visits on the Site and about the links the user may select from within the Site to other sites. NCEC cannot control the use of cookies by advertisers or third parties displaying data on the Site or whose sites a user visits or links to from the Site. Most browsers are set to accept cookies. You can set yours to refuse cookies, or to alert you when cookies are being sent.

f. Links to other sites. The Site contains links to third party websites. These links are provided solely as a convenience to users and not as a guarantee, warranty, or recommendation by NCEC of the content on such third-party websites or as an indication of any affiliation, sponsorship or endorsement of such third party websites. NCEC is not responsible for the content of linked third-party sites and does not make any representations regarding the privacy practices of, or the content or accuracy of materials on, such third-party websites. If you decide to access linked third-party websites, you do so at your own risk. Your use of third-party websites is subject to the terms of use for such sites.

g. Security of Information. NCEC is committed to keeping user information secure, and uses industry standard technology in an attempt to achieve that goal.

h. Parental Permission. NCEC does not intend that children will use the Site. Some of the information available on the Site may not be appropriate for children. USERS UNDER 18 YEARS OF AGE MUST OBTAIN PARENTAL PERMISSION TO USE THE SITE. Adults should not assist unauthorized children to access the Site. NCEC will not knowingly collect, use or disclose personally identifiable information about visitors under 18 years of age.

     

For security reasons,
you must accept the Term and Conditions of SICKLECELLDISEASE.NET
in order to be able to navigate throughout the site.
Thank you.
Disclaimer
Home