Healthography of sickle cell disease (SCD) transition: Exploring community-level indicators of SCD transition success from rural, Georgia patients' perspectives
Sickle Cell Disease (SCD), primarily affecting African Americans, is a genetic disorder detected at birth. Eventually, individuals with SCD transition from pediatric to adult care. Some patients experience geographical disparities in access to clinics. Therefore, they rely on the resources within their communities for support during the transition process. There is a need to develop community-based approaches to transition in rural, medically-underserved areas. The purpose of this study is to describe community-level indicators of transition success from rural, Georgia SCD patients’ perspectives.
Thirty rural, Georgia SCD patients are being recruited from six SCD outreach clinics. Qualitative interviews are used to explore transition experiences across the biopsychosocial ecological model (e.g. individual, family, and community-level factors). Ecological maps are used to illustrate participants’ community systems. Data are transcribed verbatim, coded, and analyzed thematically. Data collection and analysis are ongoing and will be complete by May 2014.
Themes from current transition literature include individual and interpersonal-level indicators of transition success (e.g. “feelings about transition”, “sickle cell self-efficacy”, and “social support”). Through our use of the biopsychosocial ecological model, these themes will be confirmed and we will describe patient perspectives of community-level indicators; particularly, how living in a rural community affects communication, interaction, and coordination of services.
This study fills a critical gap in the literature by exploring community-level indicators of transition success. Individuals in rural, medically-underserved communities face geographically-related challenges with SCD transition. Therefore, it is imperative that we explore community-based approaches to increase the likelihood of transition success.
Learning Areas:Chronic disease management and prevention
Social and behavioral sciences
Describe community-level indicators of transition success for rural, Georgia SCD patients.
Keyword(s): Rural Health, African American
Qualified on the content I am responsible for because: I am the principle investigator on a grant that qualitatively explores the sickle cell disease(SCD) transition experiences of rural, Georgia SCD patients. I am an Assistant Professor of Community Health Behavior and Education; and my research agenda focuses on the application of community based approaches to chronic disease management-especially as it relates to SCD.
Any relevant financial relationships? No
I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.