Publication Date

2019-07-31

Availability

Embargoed

Embargo Period

2021-07-30

Degree Type

Dissertation

Degree Name

Doctor of Philosophy (PHD)

Department

Educational and Psychological Studies (Education)

Date of Defense

2019-05-02

First Committee Member

Lydia P. Buki

Second Committee Member

Guerda Nicolas

Third Committee Member

Lissette Perez-Lima

Fourth Committee Member

Shawn Bediako

Abstract

Sickle cell disease (SCD) is the most commonly diagnosed genetic blood disorder in the United States. Although SCD can occur in other ethnic groups, in the U.S. it primarily affects individuals who are Black, and, as such, has come to be conceptualized as a “racialized” disease. This inherited disease causes chronic and acute pain episodes, resulting in frequent hospitalizations. Alarmingly, SCD patients are at disproportionate risk for early mortality during the transition period between pediatric and adult care. Hypotheses exist to explain this occurrence, but the contextual and individual-level factors underlying it are not well understood. Therefore, in this grounded theory study, I sought to develop a data-driven theoretical framework that deepens our understanding of the psychosocial factors implicated during the transitional care period. A sample of 8 SCD patients and 7 health care professionals participated in in-depth individual interviews. Findings revealed the following core idea: the transitional care period is complex and characterized by a set of five concurrent transitional processes that are influenced by biopsychosocial factors. The core idea is based on three major themes that emerged from the data: characterization of the processes, structural factors influencing the processes, and individual-level factors influencing the processes. Taken together, the results offer valuable information to improve transition processes and prevent premature deaths among Black young adult SCD patients.

Keywords

sickle cell disease; health disparities; transitional care; grounded theory

Available for download on Friday, July 30, 2021

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