title: Attitudes among healthcare providers and patients diagnosed with sickle cell disease
abstract: Sickle 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.
authors.affiliation: Self-Employed Certified Case Manager, Columbus, OH.
authors.forename: Stefani
authors.initials: S
authors.lastname: O'Connor
authors.affiliation: Ohio State University Comprehensive Cancer Center, Columbus.
authors.forename: Deborah
authors.initials: D
authors.lastname: Hanes
authors.affiliation: Ohio State University Comprehensive Cancer Center, Columbus.
authors.forename: Amy
authors.initials: A
authors.lastname: Lindsey
authors.affiliation: Ohio State University Comprehensive Cancer Center, Columbus.
authors.forename: Mary
authors.initials: M
authors.lastname: Weiss
authors.affiliation: Ohio State University Comprehensive Cancer Center, Columbus.
authors.forename: Lorie
authors.initials: L
authors.lastname: Petty
authors.affiliation: Ohio State University Comprehensive Cancer Center, Columbus.
authors.forename: Janine
authors.identifier: 0000-0002-0717-5263
authors.initials: J
authors.lastname: Overcash
mesh_terms: D000328:Adult; D000755:Anemia, Sickle Cell / Q000523:psychology* / Q000628:therapy*; D001291:Attitude of Health Personnel; D001294:Attitude to Health; D005260:Female; D006760:Hospitalization; D006801:Humans; D008297:Male; D008875:Middle Aged; D010344:Patient Advocacy; D013315:Stress, Psychological; D055815:Young Adult
keywords: attitudes; diversity; health care; pain; perceptions; sickle cell disease; stressors