Purpose

The primary purpose of the Sickle Cell Foundation of Greater Montgomery (SCFGM) Outreach Education Program is to improve the system of reaching parents of infants identified at birth as carriers of sickle cell trait (SCT), to provide follow-up counseling and improved access to appropriate educational materials. This project will also partner with local health departments, comprehensive care centers, private hospitals and federally qualified primary health centers to expand outreach case management and education activities to individuals with sickle cell disease (SCD) and those of childbearing age with sickle cell trait (SCT) in rural counties of Central and Southeast Alabama.

Challenges

The challenge has been the lack of adequate staff to reach families in the rural parts of the counties in this region. Many patients with SCD in the Central and Southeast Region of Alabama are poorly educated and socio-economically disadvantaged. Their education becomes a challenge for us because many of these patients are unaware of the serious nature of their condition. This is especially true for young mothers with infants identified with SCD that should be on the prophylactic penicillin treatment. Many of the rural counties in Alabama are considered under served by health care providers who offer sub-specialty care. Many patients have to drive long distance to Montgomery, Birmingham or Mobile for treatment.

Goals and Objectives

Goal I:

To improve follow-up rates for newborns with SCD identified in Central and Southeast Region of Alabama by the Alabama Department of Public Health (ADPH) through the newborn screening program.

Objective I:

To maintain an organized method of follow-up for newborns identified with abnormal hemoglobin screen in Central and Southeast Region of Alabama by the ADPH.

Goal II:

To expand preventative care for adolescents with SCD through outreach and education.

Objective I:

Develop an education program for adolescents and their parents to resolve issues they may face transitioning to adult care (TAC).

Objective II:

Develop an education program to increase awareness of the implications of SCT for teens of childbearing ages in the rural counties of Central and Southeast Alabama.

Goal III:

To establish a training and education program to focus on health literacy as a tool to improve compliance with treatment regimens.

Objective I:

Identify health literacy issues that may prohibit individuals with SCD from understanding health information that may limit their ability to be compliant with medical regimens and recognize the complications of their disease.

Methodology

Goal I:

To improve follow-up rates for newborns with SCD identified in the Central and Southeast Region of Alabama. SCFGM and Southeast Alabama Sickle Cell Association (SEASCA) will enter into a partnership agreement with the Alabama Department of Public Health (ADPH) and the University of Alabama Birmingham Comprehensive Sickle Center (UABCSCC) to provide a systematic approach to educate, counsel parents and provide long term follow-up for newborns diagnosed with an abnormal hemoglobin.

Goal II:

We will expand preventative care for adolescents with SCD through education and outreach by achieving the following:

Objective 1:

SCFGM and SEASCA will be a part of a collaborative study between the UABCSCC and University of South Alabama Comprehensive Sickle Cell Center (USACSCC) to focus on Transition to Adult Care (TAC) issues. The TAC team at USACSCC will consist of the pediatric hematologist, nurse coordinator, case manager, sociologist and psychologist. The SCFGM and SEASCA youth support groups will give input as a focus advisory group.

Objective 2:

An education program on the implications of SCT for teens of childbearing ages in the rural counties of Central and Southeast Alabama will be develop. We will provide education and non-directive counseling on medical and scientific information about sickle cell disease that is sensitive and accurate. A process of information transference will be age appropriate and will enable these teens to understand their own hemoglobinopathy and make informed decisions about reproduction choices and their general health care needs.

Goal III:

We will establish a training and education program to focus on health literacy as a tool to improve compliance with treatment regimens.

Objective I:

Identify health care literacy issues that hinder individuals with SCD from understanding health information that may limit their ability to care for their medical problems by the following methods:

1. a health education needs assessment to determine our patient’s health care literacy needs.
2. While imparting information to patients and families, the staff will elicit feedback to ensure that the information is understood, appropriate, and useful.

Literacy appropriate materials will be developed for patients identified as being at-risk for literacy problems. We will adopt standards to monitor the efficacy patient’s education through an interactive education process.

Objective II:

Offer physicians, nurses, allied health care provider, patients and the public an opportunity to take part in learning about new approaches to improve overall health care literacy and clinical care through long distance video conferencing and web casting.

Evaluation

The project will be evaluated both for quantifiable and qualitative outcomes. Quantifiable outcome indicators will include the number of participants to sign-up and attend each seminar. The provider participation will be monitored, as well as, the improvement in their knowledge level. The increase attendance of parents and young adults support group meetings will also be used as an indicator. Qualitative outcomes will include the health care literacy assessment, post evaluation surveys given at the end of each seminar. Seventy-five percent will be the benchmark for post education evaluations. Participants of all the education programs will complete both a speaker and a course evaluation to measure the effectiveness of the education.

Experience to Date

SCFGM as the lead organization has dedicated it efforts to providing education, screening and counseling to individuals with SCD and other abnormal hemoglobins. The Foundation has a deep-rooted commitment to 1) monitoring the occurrence of sickle cell disease through its participation with the Alabama State Health Department and the newborn screening follow-up program, 2) helping to improve the quality of life for those identified with sickle cell disease by supporting UAB Children Youth Sickle Network which creates access to care for many children in rural counties in our region, 3) cooperating with UAB and USA Comprehensive Sickle Cell Centers by identifying individuals willing to participate in clinical trials and 4) over the last ten years, out of the 3,794 newborns identified with SCT, SCFGM and SEASCA combined have provided follow-up education and counseling for 3,600 of those parents or guardians. Out of the 178 newborns identified with abnormal hemoglobin, referrals and follow-up was made for 124 families.

Text of Annotation

Our project will address issues relating to three areas of concerns for individuals with SCD and SCT in rural counties in Central and Southeast Alabama. These issues will be addressed by accomplishing: 1) Improve follow-up rates for newborns with SCD identified in Central and Southeast Region of Alabama through the newborn screening program, 2) Expand preventative care for adolescents with SCD through outreach and education and 3) Establish a training and education program to focus on health literacy as a tool to improve compliance with treatment regimens.

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