Beliefs Regarding Patient Experience in the Emergency Department Among Individuals With Sickle Cell Disease

Elizabeth A. Ibiloye, Health Outcomes Division, College of Pharmacy, The University of Texas at Austin, Austin, TX, USFollow
Gloria N. Odonkor, Health Outcomes Division, College of Pharmacy, The University of Texas at Austin, Austin, TX, USFollow
Ayobami A. Aiyeolemi, Health Outcomes Division, College of Pharmacy, The University of Texas at Austin, Austin, TX, USFollow
Jamie C. Barner, Health Outcomes Division, College of Pharmacy, The University of Texas at Austin, Austin, TX, USFollow
Carolyn M. Brown, Health Outcomes Division, College of Pharmacy, The University of Texas at Austin, Austin, TX, USFollow
Hyeun Ah Kang, Health Outcomes Division, College of Pharmacy, The University of Texas at Austin, Austin, TX, USFollow
Benita A. Bamgbade, Department of Pharmacy and Health Systems Sciences, School of Pharmacy and Pharmaceutical Sciences, Bouvé College of Health Sciences, Northeastern University, Boston, MA, USFollow

ORCID

Ayobami A. Aiyeolemi: https://orcid.org/0000-0003-4742-2158

Abstract

Individuals with sickle cell disease (SCD) frequently experience intense, unanticipated pain episodes known as vaso-occlusive events (VOEs), which often require emergency department (ED) treatment. However, they often report suboptimal experiences in the ED. Using the Theory of Planned Behavior (TPB), this study aimed to elicit salient beliefs regarding SCD patient experience in the ED. Three virtual focus group sessions were conducted with individuals with SCD recruited through a Texas SCD Association and Rare Patient Voice. Nine open-ended questions were used to elicit participants' behavioral, normative, and control beliefs regarding ED use when experiencing VOEs. Qualitative analysis was performed using a thematic inductive approach. A total of 21 individuals with SCD, aged 18 to 48 years (mean± SD: 35.3± 7.2), participated in the study. The majority were female (85.7%) and Black (95.2%), with over one-half having HbSS genotype (57.1%). A total of 22 beliefs were identified as salient, including 11 behavioral, 4 normative, and 7 control beliefs. Disadvantages of using the ED, including provider bias and stereotypes, were the most cited behavioral beliefs. Family, friends, spouses/partners, and hematologists were considered individuals who would influence the decision to use the ED. Control beliefs included ED-related factors, such as the presence of SCD treatment protocols; disease-related factors, such as the inability to manage pain at home; and support-related factors, such as reliable transportation. Findings provide insights into the ED experiences of individuals with SCD and could inform future intervention strategies to enhance patient experiences and health outcomes.

Recommended Citation

Ibiloye E, Odonkor G, Aiyeolemi A, Barner J, Brown C, Kang H, Bamgbade B. Beliefs Regarding Patient Experience in the Emergency Department Among Individuals With Sickle Cell Disease. Patient Experience Journal. 2026; 13(1):21-32. doi: 10.35680/2372-0247.2074.