Purpose

The project proposes multi-component interventions that utilize television and radio pieces aimed at encouraging individuals in communities at risk for hemoglobin traits to get tested for their trait status. The communication strategies will encourage individuals to go beyond learning about their own trait status to take ownership of the seriousness of the impact of sickle cell disease on the entire community. Personalized strategies for encouraging trait follow up and providing direct support to those living with sickle cell disease will be used. The project aims to build and strengthen partnerships among diverse community agencies, and sickle cell treatment and counseling centers.

Challenges

California has a very diverse population with one of the largest at risk African American and Latino populations for sickle cell or another hemoglobin trait. However, overall knowledge about sickle cell disease and the other hemoglobinopathies remains limited. Only 7 percent of families of infants diagnosed with sickle cell trait patterns in the East Bay region and 18 percent identified in the Central Valley region followed up to request trait counseling in 2001. Identified barriers to follow up include constraints on making personal contact with families of infants diagnosed with hemoglobin traits; language and cultural barriers; lack of transportation; low income and literacy; and lack of community and provider knowledge about the significance and diverse population representation of hemoglobin traits. Of children born with sickle cell disease, a subset of families are very challenged in providing their children with optimal medical care by their chaotic lifestyles and concrete needs. All families of children diagnosed with sickle cell disease benefit from additional support that helps them to develop the skills to assist their children in optimal disease adjustment.

Goals and Objectives

The project has four goals:

1. to improve the effectiveness of efforts to increase awareness of information about hemoglobin traits and diseases;
2. to broaden community support for sickle cell disease programs in the general population;
3. to increase participation in counseling for families with hemoglobin traits; and
4. to enhance the provision of support, education and counseling for individuals with sickle cell disease and their families with strategies that foster a sense of empowerment, improve their quality of life and collaborative disease management.

Objectives include: creating television and radio pieces that encourage individuals in communities most at risk to get tested for their hemoglobin trait status and establishing close working relationships with community agencies in order increase understanding about the seriousness of sickle cell disease. Objectives related to trait counseling include: raising the percentage of families of infants identified with hemoglobin traits that follow up with counseling and standardizing the outreach strategies in two regions in Northern California. Objectives related to families of children diagnosed with sickle cell disease include: identifying and providing concrete support for the hardest to reach families and offering classes and workshops for families that focus on teaching active coping strategies, parenting skills and advocacy. Finally the project has the objectives of providing education to community health care providers about sickle cell disease and trait.

Methodology

The project will conduct focus groups and needs assessments in order to obtain input of families regarding the content of radio and television pieces designed to increase awareness and knowledge. Community surveys will be conducted regarding general knowledge about sickle cell disease and trait. The project will implement telephoning families of infants identified through newborn screening with sickle cell trait to encourage follow up with trait counseling. The project will provide more intensive services for families of infants already diagnosed with sickle cell disease who have demonstrated a pattern of non or partial adherence. Classes and support groups will be offered to families of infants and young children with sickle cell disease aimed at improving quality of life and coping with parenting a child with a chronic illness.

Evaluation

Monthly calls to the state counseling centers will be tracked in order to monitor the impact of the personalized contact on follow up for trait counseling for infants identified through newborn screening, and of the media campaign on increasing requests for trait testing. The community surveys will provide information regarding the reach and impact of the media campaign. Quality of life and treatment adherence will be measured for families of infants with sickle cell disease. Needs assessments will be conducted with families served by the Sickle Cell Centers and counseling centers.

Experience to Date

The Community Advisory Committee spearheaded a meeting of prominent local African American business leaders and politicians in the beginning steps of enhancing community support for sickle cell disease in the East Bay region. The Northern California Comprehensive Sickle Cell Center took a leadership role in the implementation of the California Genetic Disease Branch’s Hemoglobinopathy Newborn Screening Program and instituted the Sickle Cell Educator/Counselor Training Program. The Center has also developed widely used professional, parent and pediatric educational materials. The Ethnic Health Network is the only network of its type in the country and has campaigned successfully to raise awareness about hypertension, asthma and cancer in the African American community.

Text of Annotation

The purpose of this project is to build community partnerships among organizations with an already demonstrated commitment to improving outcomes in sickle cell disease. The project will use mass media and personalized contacts with the goal of increasing trait counseling and testing in the targeted communities. The project will also implement classes and intensive support strategies for families of infants and young children diagnosed with sickle cell disease. The components of the interventions are culturally sensitive and strive to foster a sense of individual and community empowerment.

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