Problem

Individuals with sickle cell trait are not receiving adequate follow-up services including, trait counseling and psychosocial support. The purpose of this proposal is to generate and enhance public and medical provider awareness through local community based outreach programs and support services.

Goals and Objectives

Goal 1: Enhance the follow-up used by the Comprehensive Sickle Cell Treatment Centers and Department of Public Health with parents of newborns and extended families at risk to have sickle cell trait.
Objective 1: Revise format of written notification and augment with telephone follow up to parents of affected children.
Objective 2: a) Establish a community-based sickle cell trait follow-up counseling site in each of the state's five regions. b) Link the five community based sickle cell counseling sites to the Comprehensive Sickle Cell Treatment Centers and Connecticut Department of Public Health.
Objective 3: Increase the number of certified, using national criteria, Sickle Cell Trait Counselors from the current total of three, to three or more working withi!) each of the state's five regions (a total of 15+) with an expanded offerings of testing and counseling services.

Goal 2: Increase support services of sickle cell disease/trait to patients, parents, and extended families through coordinated community outreach efforts statewide.
Objective 1: Establish within each of the state's five regions collaborative community based Sickle Cell Support Groups that include psychosocial services through a partnership of Comprehensive Sickle Cell Treatment Centers and Community Advocacy Groups.
Objective 2: Evaluate the relevance and sensitivity of counseling and educational outreach programs to Hispanic populations around the state and, as required, implement modifications in language (written and oral) and practices used therein.

Goal 3: Enhance statewide educational programs utilizing "State of the Art" standards of care, for persons with sickle cell disease or trait.
Objective 1: Organize, provide and evaluate continuing educational programs to Primary Care, Obstetrics/Gynecology, Emergency Medicine, Pediatrics and Hematology specialists, and medical students around the State.
Objective 2: Establish sickle cell disease and trait educational programs directed to "at risk" adolescents regarding counseling, family planning, and decision-making in collaboration with School Based Health Clinics/School Nurses, and Department of Public Health, and university community training programs.
Objective 3: Offer a statewide sickle cell disease and trait consumer educational forum on an annual basis.

Goal 4: To develop a systematic plan of project evaluation utilizing measurable outcomes and for program material dissemination.
Objective 1: Establish a consortium to advise and implement the plan to meet the goals of the project, with the following partners: Project team consultants, State DPH, Sickle Cell Treatment Centers, Advocacy groups, Genetic counseling groups, School Health Clinics, Medical Homes, Community Health Centers
Objective 2: Establish a partnership with National Sickle Cell Disease Association, SCDAA-National Coordination and Evaluation Center (NCEC), and HRSA MCHB through the dissemination of quarterly, annual, and final reports.
Objective 3: Utilize an evaluation consultant with expertise in program evaluation and social policy to provide formative feedback and to plan for sustainability of project activities beyond the federal funding.

Activities/Methodology

The project will address and provide a coordinated system of services that will include additional follow-up notification to parents, public and professional education, and enhance support services (counseling and follow-up effort) to parents and family members of newborns identified with sickle cell disease and trait. The programs are designed to enhance services already provided by existing medical homes, advocacy groups, sickle cell centers and Title V agency. The coordinated services and programs will reduce existing barriers, bring importance and sensitivity to the issue of trait follow up by health professionals, increase carrier identification, increase the number of trained certified trait counselors as well as families and teenagers counseled. In addition, it will increase the understanding of the standards of care for sickle cell disease among health professionals, improve psychosocial services, promote diversity as well as culturally appropriate services, and ultimately increase the knowledge level of families in making informed decisions.

Healthy People 2010 Objectives

(1) Related to Objective 16.23. Increase the proportion of Territories and States that have service systems for Children with Special Health Care Needs to 100 percent.
(2) Related to Objective 16.23: Increase the proportion of States and jurisdictions that have service systems for children with or at risk for chronic and disabling conditions as required by Public Law 101-239.
(3) Related to Objective 23.11 (Developmental) Increase the proportion of State and local public health agencies that meet national performance standards for essential public health services.
(4) Related to Objective 23.15 (Developmental) Increase the proportion of Federal, Tribal, State, and local jurisdictions that review and evaluate the extent to which their statutes, ordinances, and bylaws assure the delivery of essential public health services.

Coordination

Department of Public Health - Advisory Citizens for Quality Sickle Cell Care - Community Outreach Programs Yale Sickle Cell Service - Follow-up program Hemoglobin Disorders Treatment Center at Connecticut Children's Medical Center - Follow-up Program University of Connecticut Health Center - Support Faculty for educational offerings to health care providers

Evaluation

Formative, process and outcome evaluations will be completed throughout the funding period. Each will address the following: Appropriateness (Does the structure and process assure that the desired program of activities is undertaken?); Excellence (Are activities of sufficient quality to produce valid, reproducible findings?); and Impact (Given the effort taken, could meaningfully improvement be anticipated/measured in health care of children, parents and/or families with sickle cell trait?).

Key Words

Outreach, Education, Screening

Annotation

The purpose of the proposal is to increase the awareness of sickle cell disease in Connecticut through trait follow-up and educational offerings to adolescents in the public school system and health care providers. The needs of the community are access to sickle cell counselors, support services, and community awareness. The goal of this proposal is to enhance sickle cell disease and trait awareness in Connecticut. This goal will be accomplished by creating community outreach programs.

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