UROP Project

Unpacking the Burden: A Concept Analysis of Stigma in Sickle Cell Disease Care

Sickle cell disease, stigma, health equity, literature review, concept analysis

Research Mentor: Dr. Brittany Taylor, she/her
Department, College, Affiliation: N/A, Nursing
Contact Email: bt26i@fsu.edu
Research Assistant Supervisor (if different from mentor):
Research Assistant Supervisor Email:
Faculty Collaborators:
Faculty Collaborators Email:

Looking for Research Assistants: Yes
Number of Research Assistants: 2
Relevant Majors: Nursing
Project Location: University of Sao Paulo
Research Assistant Transportation Required: No, the project is remote
Remote or In-person: Fully Remote
Approximate Weekly Hours: 10, During business hours
Roundtable Times and Zoom Link:

• Day: Tuesday, September 1
  Start Time: 2:00
  End Time: 5:00
  Zoom Link: https://fsu.zoom.us/j/92866103602
• Day: Wednesday, September 2
  Start Time: 12:00
  End Time: 2:00
  Zoom Link: https://fsu.zoom.us/j/94184668281

Project Description

Sickle cell disease (SCD) is a global health challenge characterized by phenotypic variability and significant morbidity. However, the patient experience is not only dictated by the β-globin mutation but is heavily influenced by structural injustices, institutionalized racism, and sociocultural factors. Stigma in SCD often manifests in the healthcare setting as provider mistrust and implicit or explicit bias, where patients are frequently labeled as "drug-seeking" or "over-users" of opioids during vaso-occlusive crises. Furthermore, emerging research into "genetic essentialism" shows that AI and medical literature often reduce SCD to an ethnic or national identity, which can lead to racist and stigmatizing conceptions.
This project aims to perform a formal concept analysis of "stigma" within the context of SCD care. Using an established framework (such as Walker and Avant), we will synthesize existing literature to define the attributes (e.g., shame, worthlessness), antecedents (e.g., socioeconomic deprivation, historical framework of slavery), and consequences (e.g., undertreatment of pain, social isolation, and reduced quality of life) of stigma. This research is critical for developing a biological and social basis for the phenotypic differences observed across geographic populations and for supporting health equity.

Research Tasks: Literature Review: Conduct a systematic search for peer-reviewed articles addressing perceived racial bias, health-related stigma, and "prejudice" in SCD populations. Data Categorization: Identify and categorize "attributes" of stigma, such as the feelings of shame and worthlessness reported by patients with complications like leg ulcers. Framework Mapping: Map social determinants of health (SDOH), including income and education levels, as potential modifiers or amplifiers of the stigma experience. Dissemination: Draft a poster presentation for the FSU Undergraduate Research Symposium summarizing the findings.

Skills that research assistant(s) may need: Required: Strong reading comprehension and ability to synthesize complex information.
Required: High level of organization and attention to detail.
Recommended: Interest in bioethics, medical sociology, or health disparities.
Recommended: Familiarity with basic literature review software (e.g. Covidence/Scite_) and bibliographic managers (e.g., Zotero/EndNote).