National Coordinating and Evaluation Center
Sickle Cell Foundation - Greater Montgomery (Montgomery, AL) Print

Sickle Cell Foundation of
Greater Montgomery, Inc.

Project Title: Education is the Key to Successful Newborn Screening Follow-up, Adolescent Transitioning to Adult Care and Understanding Health Care Literacy
Principal Investigator/Program: Director, Willie Owens, M. S.
Organization: Sickle Cell Foundation of Greater Montgomery, Inc.
Address: 3180 US Highway 80 West, Montgomery, Alabama 36108
Contact Person: Willie T. Owens
Phone: 334.286.9122 Fax: 334.286.4804
E-mail Address: This e-mail address is being protected from spam bots, you need JavaScript enabled to view it
Web Site: http://www.scfgm.org/

Purpose

The primary purpose of the Sickle Cell Foundation of Greater Montgomery (SCFGM) Outreach Education Program is a continuation 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 improve access to appropriate educational materials. This project will also continue to 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 these rural areas 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 continue 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:
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:
Maintain an education program for adolescents and their parents to resolve issues they may face transitioning to adult care (TAC).
Objective II:
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 III:
To maintain 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.
Objective II:
Improve dialogue between patients and the service providers by offering an opportunity to learn about new approaches to care through distance learning via video conferencing/web casting.

Methodology

Goal I:
To improve follow-up rates for newborns with SCD identified in the Central and Southeast Region of Alabama. SCFGM entered 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:
Objective 1:
SCFGM is 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 includes the pediatric hematologist, nurse coordinator, case manager, sociologist and psychologist. The SCFGM 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 was developed. We are providing education and non-directive counseling on medical and scientific information about sickle cell disease that is sensitive and accurate. A process of information transference is 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:
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 patientís 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.
Objective II:
Offer physicians, nurses, allied health providers, patients and the public an opportunity to learn 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 and 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 has monitored the occurrence of SCD through its participation with the ADPH and the newborn screening follow-up program, over the last ten years, out of the 2,012 newborns identified with SCT, SCFGM has provided follow-up education and counseling for 1,837 of those parents or guardians. 2) Out of the 103 newborns identified with abnormal hemoglobins, referrals and follow-up were made for 103 families to the Baby Step Program. This program was created by UAB Children Youth Sickle Network to improve access to care and education for children and mothers in rural counties in our region and 3) cooperating with UAB and USA to complete a summary evaluation on issues relating to transition preparedness for forty-six young adults between to ages of 13 and 18 years of age.

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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