Insights from a Sickle Cell Disease Community-Based Organization Stigma Intervention
Authors: Brown Tartania , Brown Sarah , Deler Candice , Rivlin Kenneth 
Published: June 2024

Presentation Date: 6/9/2024

Presentation Start Time: 4:00:00 PM

Background

Individuals living with sickle cell disease (SCD) face significant stigma and barriers when seeking emergency care for pain. Too often, they are viewed as drug seekers and hear derogatory and depersonalizing terms such as “sickler” or “frequent flyer.” The negative staff attitudes cause many individuals to delay going to the emergency department (ED)until their pain overwhelms their “dignity.” This results in increased suffering, hospitalizations, complications, and costs. It is well documented that simple, evidence-based interventions, when implemented, improve staff attitudes towards individuals living with SCD. We also know the ED staff wants to do what is right. The crucial question is how we can help the ED meet the SCD community’s needs. In response, we utilized an educational intervention, “Sickling is not seeking,” to open reflective and educational dialogues. The intervention was based on effective interventions and included a short video of the patient’s perspective, sample notes highlighting stigmatizing language, and an overview of the NHLBI SCD pain guidelines.

Our objective is to report on the progress, outcomes, and lessons learned from a community-based organization (CBO) utilizing “Sickling is Not Seeking” to improve clinician attitudes towards individuals living with sickle cell disease.

Methods

Supported by a hospital SCD “champion,” the CBO presented “Sickling is Not Seeking” at both ED and Internal Medicine Grand Rounds in a large public hospital. The presentation was done by a community advocate and palliative care physician living with SCD. Notes from discussions and chats were collected to improve the quality of future presentations.

Results

Over 60 physicians, residents, and medical students attended the presentations. Key to opening a dialog was the recognition by the presenters that SCD patients can be frustrating to care for. Feedback on the intervention suggested improvement in clinicians' perspectives of SCD patients and management. Comments could be divided into recognition of provider improvements and needed system changes.

At the provider level, most felt the video –“They don't believe me” was powerful. One commented that she was “unaware that patient thought about their clothing choices before going to the hospital. Another resident noted on self-reflection that she now felt guilty for being happy a patient with sickle cell signed out of the ED AMA so “I didn't have to deal with him.” She acknowledged that she used his past hospitalizations as evidence not to believe him.

Another resident appreciated seeing how words in the medical record matter; she reflected on how she may have used stigmatizing language in writing her notes.

Many highlighted the need for readily available SCD pain management guidelines at the system level. The residents were also frustrated that there was “no one to send the patients to after they left their care.”

Conclusions

This effort reinforces the importance of ongoing collaboration between healthcare providers and community organizations in developing practical, compassionate care strategies for SCD patients. The intervention’s success underscores the necessity of acknowledging provider frustrations while highlighting the power of patient narratives to foster empathy, self-reflection, and recognition of system improvement.