Sickle Cell Disease and Care in the Emergency Department: Raising Awareness Through Authentic Voices

Background:

Sickle Cell Disease (SCD) is a genetic blood disorder passed from parents to children. People with SCD have abnormal red blood cells that prevent blood from getting to the body’s tissues and organs, causing severe pain, infection, and in some cases, stroke and other serious health problems.

People with SCD frequently visit the emergency department to seek care and manage symptoms related to their disease. Many people with SCD have reported barriers and challenges, such as long wait times and lack of provider knowledge related to SCD, when seeking treatment in emergency care settings.

To raise awareness of the experiences of people with SCD seeking care in the emergency department, the National Center on Birth Defects and Developmental Disabilities (NCBDDD) in the Centers for Disease Control and Prevention (CDC) created a digital activation aimed at providing critical information to emergency care providers on how best to support people with SCD and their caregivers. To leverage the power of storytelling, NCBDDD partnered with the American College of Emergency Physicians and people with SCD and their family members to host a 1-hour webinar titled Breaking Down Barriers to ED Care for People with SCD and to create materials for social media designed to educate, engage, and inspire change.

Program background:

CDC is dedicated to reducing the public health burden resulting from SCD and other blood disorders by contributing to a better understanding of blood disorder prevalence, symptoms, and complications. SCD is estimated to affect more than 100,000 people in the United States, but the exact number of people with SCD is unknown.

Evaluation Methods and Results:

Evaluation for this activation included collecting and analyzing key digital media metrics: exposure (total impressions across social media platforms), actions (link clicks, video views, webpage visits), and engagement (likes, shares, saves). This activation obtained more than 360,000 social media impressions, 332 link clicks on social media, and almost 2,000 social media engagements through organic and paid media.

In addition to the social media metrics, emergency care providers were asked to complete a brief survey following the webinar. Results indicated positive responses in several areas including providers’ intention to engage in more compassionate emergency care for people with SCD and increased knowledge about SCD complications and healthcare needs. Additionally, providers described information and resources that would help them better deliver emergency care to people with SCD in the future.

Conclusions:

The use of real stories can help health communicators and programs expand the reach and engagement of their products and materials.

Implications for research and/or practice:

Results from this activation will help health communicators, content creators, and program administrators develop engaging communication materials and tactics that integrate a storytelling approach to promote health messages.