Lawrence Raymona H, Apenteng Bettye A, Schueths April M, Pattanaik Swaha, Gibson Robert W
J Health Care Poor Underserved. 2018;29(4):1438-1454. doi: 10.1353/hpu.2018.0105.
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.
患有镰状细胞病（SCD）的个体往往难以从以儿科为主的医疗环境过渡到以成人为主的医疗环境。一个可能的原因是，许多过渡项目没有关注患者离开医疗环境回到社区后会发生什么。对于患有SCD的个体如何定义社区，我们知之甚少。因此，我们与佐治亚州四个农村SCD外展诊所的医疗服务提供者合作，对21名已过渡到成人SCD护理的个体进行了定性访谈。生物心理社会生态模型是该研究的框架。研究结果表明，患有SCD的个体描述了社区的五个方面，这些方面跨越了生物心理社会生态模型的家庭、社区和社会层面：1）直系亲属、朋友和社交圈；2）与医疗服务提供者的关系；3）地理社区/邻居；4）教会/精神支持；5）社会。如果旨在改善农村社区SCD的干预措施不仅包括家庭支持，还包括加强邻里支持以及患有SCD的成年人与相关社区组织之间的联系，那么这些干预措施可能会最有效。
