Promoting Birth Defects Awareness Across the Lifespan Through Storytelling

Background:

Birth defects impact people across the lifespan. To raise awareness about birth defects and improve the health of people living with these conditions, the National Center on Birth Defects and Developmental Disabilities (NCBDDD) developed communication materials that showcased authentic voices of people with birth defects, infant disorders, and related conditions and their families. Attendees will learn about the process used to engage with people with lived experiences to tell their stories. This panel will highlight recommendations and lessons learned for collecting stories and strategies to maximize their impact and relevance for health messaging.

More specifically, NCBDDD staff identified people living with birth defects and related conditions via promotion on social media and engagement with partner organizations. After individuals or families volunteered and gave permission to share their story, NCBDDD staff provided prompts for volunteers to complete. Quotes were selected to highlight key themes NCBDDD wanted to amplify. These testimonials were then used in the creation of engaging graphics for placement on social media and partner channels.

Program background:

NCBDDD's Division of Birth Defects and Infant Disorders (DBDID) aims to identify and address preventable causes of birth defects, infant disorders, and related conditions; promote and improve the health of people living with birth defects, infant disorders, and related conditions; and rapidly respond to emerging health threats to understand and reduce their effects on pregnant people and their infants. Together with state, territorial, and local health departments; academic centers; healthcare providers; and other partners, DBDID is working toward a day when all babies are born with the best health possible and every child thrives.

Evaluation Methods and Results:

Evaluation for this activation centered primarily on collecting and analyzing several key social media metrics, including exposure (total impressions across social media platforms), engagement (likes, shares, saves), and actions (link clicks, videos views, webpage visits, and downloads). Social media posts that featured real stories from people with lived experiences garnered high engagement and reach through organic and paid advertising.

Conclusions:

The use of real stories can help health communicators and programs expand the reach and engagement of their products and materials. These stories, including photos of real people and families, helped demonstrate the human impact of these conditions beyond the data.

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.