Research Projects

Sickle Cell Disease (SCD)

Complexity of Inpatient Sickle Cell Care

• Qualitative study exploring how individuals with SCD and their healthcare team conceptualize ideal inpatient SCD care

Inpatient SCD Care: The Patient Journey

• Qualitative patient journey mapping study to explore the patient experience of inpatient SCD care

FIRES: Formative Implementation Research on Translating Evidence to Inpatient Sickle Cell Care

• A multi-phase mixed methods study exploring how individualized care plans are implemented in inpatient SCD care using surveys, qualitative interviews, and deductive qualitative analysis

I-PIC: Individualized Care Plans for Inpatient Sickle Cell Care

• Uses human-centered design to prototype individualized care plans for inpatient SCD management

Quality Measures for Inpatient Sickle Cell Disease Care: A Scoping Review

• Identifies and synthesizes potential quality indicators for inpatient sickle cell care that can inform future interventions using a scoping review methodology. Measures of quality reported in studies.

Interventions to Improve the Quality of Inpatient Sickle Cell Care: A Scoping Review

• Develops a taxonomy of interventions used to enhance inpatient SCD care through deductive qualitative analysis using a scoping review methodology.

Using an Implementation Science Lens to Evaluate a Pediatric to Adult Sickle Cell Healthcare Transition Program

• A mixed-methods evaluation of the University of Rochester SCD transition program, with qualitative and quantitative components.

Pervasiveness of Moral Distress in Inpatient Sickle Cell Care Delivery

• Secondary analysis using qualitative data on moral distress among inpatient SCD providers.

Impact of Inpatient SCD Care Changes

• Examines the effects of implemented care changes through a mixed-methods design and perspective paper.

Intellectual and Developmental Disabilities (IDD)

Exploring the Impact of Legal Protections on the Advance Care Planning Process for Individuals with Intellectual and Developmental Disabilities (IDD) in New York State

• Uses a mixed methods approach to understand the current state of advance care planning for hospitalized individuals with IDD in NY
• Design or adapt interventions to improve the timeliness and quality of advance care planning during acute illness for individuals with IDD

PATCH and System Redesign

Healthcare Delivery Models Supporting Inpatient Care for Individuals with Childhood-Onset Conditions

• Scoping review using an implementation science lens to identify care delivery models supporting the care of individuals with childhood-onset conditions in both pediatric and adult care settings.