Breaking The SSickle Cell Cycle Foundation, Inc.
Programs
Budget
$150,000.00
Description
The program will address the significant educational deficit that exists in the community regarding the blood disorder, SCD. Public education and awareness serve to demystify a health condition, this is especially needed for SCD/SCT. There are not enough health care providers with the comprehensive knowledge and expertise to care for people with SCD. General public awareness and understanding of SCD is limited, which places the burden on patients and community based organizations to educate those in their milieu (e.g., health care, schools, universities, clinics). By offering SCD specific educational materials, training programs, and sickle cell trait testing the occurrence and public health burden of SCD/SCT might be reduced. As a result of the targeted educational outreach, the program will provide a foundational understanding for both professionals and impacted families that will enable them to each perform their roles in supporting SCD patients in a more effective manner.
Program Successes
The foundation previously conducted a community engagement studio on "Raising Community Awareness about the Importance of Sickle Cell Disease" among college students, to assess the current knowledge of sickle cell disease amongst target populations and to gain insight into how to incorporate sickle cell disease education into the curriculum. Based on participants feed-back, the educational information presented is needed and it should be required as a part of university orientation and offered as a 4-week session. The participants would be more inclined to information presented in a more interactive fashion that takes advantage of technology. In addition to learning about the information in a lecture setting, the participants also suggested that sickle cell trait testing also be made available thru the college campus health centers.
This is an example of how raising SCD awareness can motivate community members to seek information that can be used to decrease the prevalence of SCD.
Beneficiaries
General Public
People with Other Health Conditions
Minorities
Long-term Success
The ultimate changes that would result from this program are multi-faceted and impact many sectors of the community. As a result of the educational trainings offered, there would be:
1) An increase in health organizations and institutions that prioritize evidence based treatment for SCD patients and also support SCD professional development training for healthcare professionals
2) An increase in the number school systems that have dedicated resources to support educational development of students, educators and staff that will enable students to thrive and excel in the face of battling a painfully chronic condition
3) An increase in the number of community members that seek SCD trait testing
4) Improvements in patient/caregiver understanding of SCD and self management techniques that result in improved over-all health, reduced healthcare resource utilization
5) Reductions in state-wide SCD prevalence and improved morbidity and mortality rates due to SCD
Short-term Success
At the conclusion of an SCD educational training program individuals will have a more informed sense of sickle cell disease awareness and understand how it impacts the community as whole. Participants will have factual information that debunks misinformation that "sickle cell is a black disease". Individuals will have skills and knowledge necessary to provide a more comprehensive approach to providing support to sickle cell patients, families, caregivers.
100% of participants will receive information that can be readily used to implement changes within their respective organizations.
A 100% increase in colleges/universities (HBCU's) that highlight SCD awareness during campus health fairs provide SCD education and information in the campus student health centers.
Families reporting confidence and ability to implement changes learned by participating in an educational session.
An increase in the number of participants that consent to receive sickle cell trait testing
Program Success Monitored By
Program success is monitored by conducting focus groups and community engagement studios consisting of representatives from the targeted educational population, to gain insights into where exactly on the SCD knowledge gap spectrum more emphasis needs to be placed to yield more positive outcomes for all participants and ultimately SCD patients . Is the deficit in the area of general awareness, treatment/management options, or educational support?
Initiative success will be measured by pre/post surveys administered at each session. Follow-up sessions/round tables will be conducted to obtain feedback into what works best for the target population. Patient/families will be contacted to gain one-on-one insight into their perspectives regarding the usefulness of the information presented.
used to impact the prevalence of SCD
Program Areas Served
Education and Awareness
$150,000.00
Description
The program will address the significant educational deficit that exists in the community regarding the blood disorder, SCD. Public education and awareness serve to demystify a health condition, this is especially needed for SCD/SCT. There are not enough health care providers with the comprehensive knowledge and expertise to care for people with SCD. General public awareness and understanding of SCD is limited, which places the burden on patients and community based organizations to educate those in their milieu (e.g., health care, schools, universities, clinics). By offering SCD specific educational materials, training programs, and sickle cell trait testing the occurrence and public health burden of SCD/SCT might be reduced. As a result of the targeted educational outreach, the program will provide a foundational understanding for both professionals and impacted families that will enable them to each perform their roles in supporting SCD patients in a more effective manner.
Program Successes
The foundation previously conducted a community engagement studio on "Raising Community Awareness about the Importance of Sickle Cell Disease" among college students, to assess the current knowledge of sickle cell disease amongst target populations and to gain insight into how to incorporate sickle cell disease education into the curriculum. Based on participants feed-back, the educational information presented is needed and it should be required as a part of university orientation and offered as a 4-week session. The participants would be more inclined to information presented in a more interactive fashion that takes advantage of technology. In addition to learning about the information in a lecture setting, the participants also suggested that sickle cell trait testing also be made available thru the college campus health centers.
This is an example of how raising SCD awareness can motivate community members to seek information that can be used to decrease the prevalence of SCD.
Beneficiaries
General Public
People with Other Health Conditions
Minorities
Long-term Success
The ultimate changes that would result from this program are multi-faceted and impact many sectors of the community. As a result of the educational trainings offered, there would be:
1) An increase in health organizations and institutions that prioritize evidence based treatment for SCD patients and also support SCD professional development training for healthcare professionals
2) An increase in the number school systems that have dedicated resources to support educational development of students, educators and staff that will enable students to thrive and excel in the face of battling a painfully chronic condition
3) An increase in the number of community members that seek SCD trait testing
4) Improvements in patient/caregiver understanding of SCD and self management techniques that result in improved over-all health, reduced healthcare resource utilization
5) Reductions in state-wide SCD prevalence and improved morbidity and mortality rates due to SCD
Short-term Success
At the conclusion of an SCD educational training program individuals will have a more informed sense of sickle cell disease awareness and understand how it impacts the community as whole. Participants will have factual information that debunks misinformation that "sickle cell is a black disease". Individuals will have skills and knowledge necessary to provide a more comprehensive approach to providing support to sickle cell patients, families, caregivers.
100% of participants will receive information that can be readily used to implement changes within their respective organizations.
A 100% increase in colleges/universities (HBCU's) that highlight SCD awareness during campus health fairs provide SCD education and information in the campus student health centers.
Families reporting confidence and ability to implement changes learned by participating in an educational session.
An increase in the number of participants that consent to receive sickle cell trait testing
Program Success Monitored By
Program success is monitored by conducting focus groups and community engagement studios consisting of representatives from the targeted educational population, to gain insights into where exactly on the SCD knowledge gap spectrum more emphasis needs to be placed to yield more positive outcomes for all participants and ultimately SCD patients . Is the deficit in the area of general awareness, treatment/management options, or educational support?
Initiative success will be measured by pre/post surveys administered at each session. Follow-up sessions/round tables will be conducted to obtain feedback into what works best for the target population. Patient/families will be contacted to gain one-on-one insight into their perspectives regarding the usefulness of the information presented.
used to impact the prevalence of SCD
Program Areas Served
Education and Awareness
CEO/Executive Director/Board Comments
| Challenge: Not having sufficient working capital to expand program offerings and provide more comprehensive services Opportunity: join/engage with grantors and donors that support the mission/discipline of the non-profit organization Mitigation strategy: refine scope of services offered to reflect the most urgent need of the target population to fit within budgetary limits Challenge: locating/connecting with SCD Population that is not connected to care Opportunity: this challenge presents an opportunity to build partnerships with more community organizations (i.e. churches, school systems, etc.) to increase SCD awareness and encourage people to join the foundation to get connected to resources that may be of benefit Mitigation Strategy: Focusing on those SCD families that we are already working with to ensure sufficient support is offered to them Challenge: implementing program within healthcare and school systems Opportunity: establish and build relationships with community partners to help make connections in areas where the foundation is not actively performing advocacy outreach that will facilitate partnerships within target organizations Mitigation Strategy: Utilize free resources that provide general overview of SCD available from the CDC or other SCD specific organization to share with educators and health systems |
