Improving the Quality of Whole-Person Healthcare Delivery: Critical Components of a Sickle Cell Disease Nurse Navigator Role.

Purpose/objectives: Sickle cell disease (SCD) is a complex genetic hemoglobinopathy which is associated with a severely shortened lifespan; the median age of death remains in the low 50's. Individuals living with SCD have complex medical, psychological, and social needs. The complexity results in difficulty navigating the healthcare system, and often being unaware of existing resources that may assist with addressing unmet social needs. Navigating fragmented healthcare and other support systems, as well as ensuring access to care, is challenging for persons with complex chronic diseases such as those living with SCD. Most healthcare institutions do not use SCD-specific nurse navigation models. The purpose is to describe an evidence-based SCD practice model for nurse navigation to improve the quality of whole-person healthcare delivery.

Primary practice settings: Care for individuals with SCD.

Findings/conclusions: This disease-focused, nurse navigation model was adapted from effective models and theories. The authors identify and describe nurse navigator competencies, including care coordination, patient education and support, communication, and expertise in SCD care delivery. Each of these competencies is operationalized into core and adaptable intervention components in this model to improve the quality of life and longevity of individuals living with SCD.

Implications for case management practice: Nurse navigators are required to understand and manage the care of individuals with complex healthcare needs. The authors identified a comprehensive model that clearly delineates the most effective components of nurse navigation for SCD that can be adopted to a variety of healthcare and community settings to achieve the highest likelihood of meeting whole person healthcare delivery needs. Partnering with community-based organizations, healthcare systems, and government resources is critical.