• Stefani O'Connor, Deborah Hanes, Amy Lindsey, Mary Weiss, Lorie Petty, and Janine Overcash.
• Self-Employed Certified Case Manager, Columbus, OH.
• Clin J Oncol Nurs. 2014 Dec 1; 18 (6): 675-80.

AbstractSickle cell disease (SCD) is a chronic condition that affects thousands of people worldwide. The purpose of this study is to illustrate some of the challenges and perceptions of people diagnosed with SCD. The aims were to describe stressors, problematic symptoms, sources of support, and interactions with healthcare providers. This descriptive study, using mostly open-ended questions and conceptual analysis, included a sample of patients with SCD who were older than 18 years in ambulatory (57%) and inpatient (43%) clinics. Participants completed a 20-minute interview. Pain or SCD crisis were the chief reasons for hospitalization, and a wellness checkup was the chief reason people returned to an ambulatory clinic. Most (74%) were able to perform chores. Family was reported to cause the most stress in the home and also provide the most help. Pain is a pervasive aspect of life, limiting activities of daily living. Negative interactions with healthcare providers are common; therefore, advocacy is necessary for patients with SCD.

23 keywords...

hide…