id	author	title	date	pages	extension	mime	words	sentence	flesch	summary	cache	txt
ijcre-2805	Spruill, Ida J.; Leite, Renata Serricchio; Fernandes, Jyotika K.; Kamen, Diane L.; Ford, Marvella E.; Jenkins, Carolyn; Hunt, Kelly J.; Andrews, Jeannette O.	Successes, challenges and lessons learned: Community-engaged research with South Carolina's Gullah population	2013	19	.pdf	application/pdf	8815	276	33	Decrease lupus morbidity and mortality among Gullah through new genetic discoveries, to improve prevention and treatment modalities Sought input from pre- established SIFP to better inform protocol design and define recruitment strategies Organised a smaller steering committee for the project Provided educational seminars on lupus for the community Performed autoimmune disease screenings within the community Invited community members for autoimmune disease testing and counselling Partnered with patient advocacy and support groups Hired a community liaison, who is also an SIFP member Smaller steering committee formed in addition to quarterly meeting with the SIFP Multiple approaches and strategies based on community input and requests Community members have initiated studies to address research questions utilising the SLEIGH cohort and have become approved study personnel Continue to provide community services and feedback to the community on study findings and implications Maintaining up-to-date contact information for study participants is a priority REACH Decrease disparities for AA Gullah with diabetes Employed members of the community to work collaboratively with researchers to identify goals and objectives, and design activities and evaluation methods for identifying and reducing disparities Organised a coalition of community members and academic researchers to work together to identify and establish relationships with community leaders and members of the community Researchers and public health leaders shared the science of diabetes with the community, while the community leaders and members decided when, where and how to apply the ‘science of diabetes’ within their communities Memoranda of agreement with FQHCs, community organisations and libraries within the community Multiple approaches and strategies based on community input and requests The community organisations and agencies were invited to identify a member of their community to lead community activities and serve as resources Community organisations were invited to become Coalition partners and receive funding for implementing activities Identified members of the Coalition and employees from the community were involved in decision- making related to ongoing activities of REACH Community members determined when, where, what and how to engage community in activities, while REACH employees and Coalition members assisted with implementing and evaluating community progress in addressing disparities related to diabetes management and control Hollings Cancer Center Improve cancer disparities Identify effective cancer awareness, prevention and treatment in Sea Islands communities Research team members participated in training sessions on Sea Island/ Gullah culture Research team members talked with local historians and read literature Research team attended cultural events in the community Conducted cancer education training programs with Gullah community members Advisory committee comprised of Sea Island community members Provided cancer screening, patient navigation and cancer education services in the Sea Island communities ‘Train the Trainer’ approach with lay community facilitators HCC recently conducted a cultural competence training led by the internationally renowned National Coalition Building Institute group Participated in Sea Island Community Celebration; as a result, one of the community leaders will play a major role in organising the research team to conduct a cancer education/ training program with members of her community Presented initial research to SIFP to obtain approval and input before moving forward with the studies Continue to provide tangible services to community members and will expect community members to highlight areas of cancer research in which they would like to collaborate with members of the research team Table 2: Case studies and principles for community engagement 164 | Gateways | Spruill, Leite, Fernandes, Kamen, Ford, Jenkins, Hunt & Andrews CHALLENGES, LESSONS LEARNED, RECOMMENDATIONS Challenges experienced by our research teams have been organised into three major areas: 1) structural inequality; 2) organisational and cultural issues; and 3) resources for sustainable infrastructure. Jenkins, C, Myers, P, Heidari, K, Kelechi, T & Buckner-Brown, J 2011, ‘Efforts to decrease diabetes-related amputations in African Americans by the racial and ethnic approaches to community health by Charleston and Georgetown diabetes coalition’, Family & Community Health, vol. 34, suppl.	cache/ijcre-2805.pdf	txt/ijcre-2805.txt