A Scoping Review of Qualitative Studies on Inpatient Care for Individuals with Sickle Cell Disease

Background: Individuals with sickle cell disease (SCD) frequently require care in the inpatient setting. Yet, there is no consensus on what comprises quality inpatient SCD care. Understanding patient, caregiver, and healthcare professional perspectives is a foundational step to defining inpatient SCD care quality. Objectives: Establish a patient, caregiver, and healthcare professional-informed foundation for quality inpatient SCD care by synthesizing qualitative literature related to the inpatient SCD care experience. Method: We searched Embase.com, Global Index Medicus, MEDLINE, APA PsycINFO via Ovid, Scopus, CINAHL, and Web of Science for peer-reviewed articles reporting on qualitative experiences on inpatient SCD care from inception to June 15, 2023. We dually screened studies, extracting key information from included articles before conducting thematic analysis using meta-aggregation. Results: We included 42 studies that explored perspectives of patients (n = 32, 7%), caregivers (n = 12, 29%), and healthcare team members (n = 9, 21%). We synthesized six meta-themes: (1) established inpatient clinical infrastructure is necessary for patient-centered inpatient SCD care, (2) comprehensive SCD care needs to wrap around all healthcare contexts, (3) enabling shared decision-making in pain management, (4) mitigating the impact of bias and stigma, (5) individualized care, (6) mental health and traumatic experiences, and (7) SCD-specific advocacy and education. Themes aligned with the Donabedian model of quality care including structural barriers (e.g., inadequate hospital staffing, limited electronic medical record access), process-related gaps (e.g., ineffective pain management, poor provider-patient communication), and outcome-driven priorities (e.g., timely pain relief, improved continuity of care). Conclusion: Individuals with SCD are forced to experience and navigate the intersectional impacts of having a chronic condition from birth, a higher risk of socioeconomic disadvantage, and healthcare delivery prone to racial bias and opioid-related stigma. This review highlights key areas of quality inpatient SCD care, emphasizing the need for system-wide changes in clinical infrastructure, provider education, and patient-centered policies.