Trust or Mistrust: Sickle Cell Warriors Unraveling Medical Mistrust

Sickle cell disease primarily affects about 100,000 Americans, and greater than 7 million people worldwide.  Sickle cell disease (SCD) is a group of genetic disorders that affect red blood cells, causing them to become shaped like crescents or sickles. The sickle-shaped cells can travel through the bloodstream, getting stuck and cutting off blood flow, leading to intense pain and organ damage. Patients with SCD may experience chronic pain and have learned to manage frequent acute pain crises, leading some providers to mistakenly view them as drug seeking individuals. Thus provider bias often leads to inadequate pain treatment, with healthcare providers sometimes labeling patients as lazy, drug-seeking, or addicts.

This misrepresentation leads to feelings of health-related stigma, the rejection of individuals with certain health conditions based on negative stereotypes, particularly within healthcare settings. Addressing the impacts of stigma and mistrust must be the responsibility of physicians and future healthcare providers.

Trust is built on respect and humility. Effective, culturally relevant communication can improve trust. Patients often face psychosocial pressures compounded by their physiological pain. By effectively communicating with patients, providers can create opportunities to connect and express empathy, gaining insight into patients’ needs and fears, which can mitigate concerns and enhance the overall care experience.

At this year’s International Conference on Stigma, we are addressing the biases and health related stigma that patients face and fostering understanding and empathy in healthcare.  We are hosting a specific panel session on Sickle Cell Disease featuring two sickle cell warriors, a medical student, sickle cell disease researcher, and a hematologist.   This panel aims to be a learning experience for students about cultural humility and how to address the needs of individuals with sickle cell disease.

The conference will be open to all audiences with discussions and learning opportunities (including Social work CEU’s) designed to increase understanding of mistrust and cultural differences in providing targeted care, ultimately working to end disparities. By fostering understanding, trust, vulnerability, and empathy in patient interactions, we can dismantle the power dynamics and mistrust that currently exists in the medical system.

Register or get more information HERE 

Temitope Creppy

Joanne Adelberg, MS

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