Defining “Community” from the perspectives of individuals with sickle cell disease in rural Georgia

Individuals with sickle cell disease (SCD) often struggle to transition from pediatric to adult-centered medical environments. One probable cause is that many transition programs do not focus on what happens when patients leave the medical environment and return to their communities. Little is known about how individuals with SCD define community. Therefore, we worked with health care providers at four rural Georgia SCD outreach clinics to conduct qualitative interviews with 21 individuals who had transitioned to adult SCD care. The biopsychosocial ecological model was the framework for the study. Findings indicated that individuals with SCD describe five aspects of community that span across the family, community, and society-levels of the biopsychosocial ecological model: 1) immediate family, friends, and social circle; 2) relationships with medical providers; 3) geographic community/neighbors; 4) church/spiritual support; and 5) society. Interventions designed to improve SCD in rural communities may be most effective if they include not only support from family but also enhanced neighborhood supports and links between adults with SCD and relevant community organizations.