Challenges and Resilience in the Lives of Adults with Sickle Cell Disease

Abstract

This qualitative study focused on the experiences of adults living with sickle cell disease (SCD) in the New York City area. Twenty-three individuals participated in one of three focus groups. The purpose of this study was to learn if appropriate health care for individuals with sickle cell disease, based on years of research, has been implemented. The findings indicate that best practices in the treatment of SCD are often not followed by medical personnel. Critical race theory provides a framework to understand the 10 emergent themes. The participants' responses illustrate resilience in facing adversity. Implications for social work practice are presented.

Keywords::

• Sickle cell disease
• qualitative
• health care disparities
• critical race theory
• resilience
• African American

Acknowledgments

The authors would like to thank Mark D. Goodwin, LCSW, Coordinator, Bronx Office-Sickle Cell Thalassemia Patient's Network, and Program Coordinator, Bronx-Lebanon Hospital Center Pediatric Sickle Cell Program, for encouraging this research study and for his help in accessing participants for this project.