Genetic Conditions

Project Title:  A Qualitative Examination of the Transition Experiences of Rural Sickle Cell Disease Patients


Principal Investigator:  Dr. Raymona H. Lawrence (College of Public Health)
Co-Investigators:  Dr. April Schueths (Sociology & Anthropology) and Dr. Bettye Apenteng (Public Health)



Sickle Cell Disease (SCD) is a genetic disorder that primarily affects African Americans in the United States. Medical advances have increased the life expectancy of individuals with SCD. Therefore, there is a need for patients to transition from the comfort of highly supported, comprehensive, family-based pediatric care to more independent, self-reliant, individualized adult care. Many SCD patients living in rural areas do not have regular access to necessary resources such as sickle cell centers or patient centered medical homes (PCMH) to ensure continuity of their care because of the distance and travel time required to reach these facilities. Current transition programs have focused on what happens during the short time the patient is at the sickle cell center or PCMH. Unfortunately, SCD patient mortality rates still increase significantly during the 10 years post transition (~ages 18-30). This may be because most of the life of a SCD patient is spent outside the clinic. Therefore, current clinic-based transition programs ignore or discount the many other aspects of the patient’s life that can positively or negatively affect transition (e.g. family support, community resources, etc). There is a need to broaden the focus of these programs to develop community based approaches to transition, especially in medically-underserved, rural areas. There is little research focusing on the transition experiences of individuals who live in rural areas and how community level factors can facilitate transition success. Also, there are no SCD patient-generated, ecologically focused definitions of “transition success” or “community” in the literature. Defining these concepts from the perspective of a SCD patient is essential to the development of effective community-based approaches to SCD transition that can be used to complement existing clinic-based approaches.

To address this gap, we propose to qualitatively examine the following aim and corresponding objectives: Specific Aim: To describe the transition experiences of rural adults with SCD; Objective 1) To identify factors across the ecological model that contribute to transition success from the perspectives of rural adults with SCD (e.g. psychological and physical person, family, community factors); and Objective 2) To develop patient generated, ecologically focused definitions of the terms “transition success” and “community.”


This pilot project will use semi structured in-depth interviews to explore the life experiences of adults, with SCD, who have transitioned from pediatric to adult-centered care. Interviews will be supplemented by the use of ecological maps, a visual tool collaboratively developed and constructed by the researcher and the participant to illustrate and locate the participant’s main community systems. Understanding the transition experiences and perceptions of rural SCD patients as they relate to “transition success” and “community” is an essential foundation for our future research that will ask broader questions concerning the utility of community based approaches to SCD and other chronic disease transition.

Last updated: 9/26/2014

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