Pathways to Trust
In August 2023, HFNJ provided a Special One-time Grant of $8,000 to Pathways to Trust to develop and deliver a one-time series of educational events for medical and nursing students in our area to help them provide better care for patients with Sickle Cell Disease (SCD).
SCD is an inherited, genetic disorder of the red blood cells primarily affecting people of African descent – with one in every 13 African Americans carrying a genetic trait for SCD and 1 in every 365 born with the disease. Problems typically begin around five to six months of age and include a number of health problems including attacks of joint pain (known as a sickle cell crisis), anemia, swelling in the hands and feet, bacterial infections, dizziness and stroke. The average lifespan for individuals born with SCD is 49.3 for men and 55 for women.
Pathways to Trust’s program – Time to Listen to Sickle Cell Disease – was provided thanks to The Healthcare of New Jersey’s funding for 160 nursing students at RWJBarnabas/Trinitas School of Nursing in Newark and Elizabeth, and at Muhlenberg School of Nursing in Plainfield. It was also provided to 105 medical students from St. George University who are currently in clinical rotations at Overlook Medical Center.
Each session, developed from real patient experiences, began with an overview of the clinical aspects of SCD presented by an expert healthcare provider, followed by personal testimony of a patient focusing on the psychological/emotional effects of living with SCD and its impact on navigating school, career, finances, social and romantic relationships.
Professional actors portrayed a typical experience of a patient with SCD attempting to access care in the US healthcare system and encountering bias, suspicion and an overall lack of provider knowledge. Participants broke into small groups to review the scenario and present suggestions to the group about different choices the provider and patient could have made to bring about a positive medical outcome through a respectful and empathetic patient encounter. The live vignette is repeated, but this time incorporating the participants’ insights so they can see the impact a knowledgeable and caring practitioner can have on a patient.
Post-program surveys indicate that participants found the program extremely helpful in understanding the challenges faced by patients. As one medical student reflected, “I will always remember to approach patients with curiosity and empathy, remembering that though I am supposed to be the expert in science, they are the expert in experience…More than any classroom learning I have had so far in my medical school career this provided me with context and insight for patients with Sickle Cell disease.”