Emergence of an Online Support Community for Cardiac Arrest Survivors, Co-Survivors, Lay Rescuers, and Advocates
Abstract Body: Background: Cardiac arrest survivors often experience physical, cognitive, emotional, and social challenges that can linger for years. Co-survivors and lay rescuers can also experience distress. In January 2023, the Sudden Cardiac Arrest Foundation (SCAF) launched the Cardiac Arrest Survivor Alliance™ (CASA), an online community to support these individuals. CASA offers evidence-based information about common challenges post survival, easy connection with peers, access to experts, and pathways to further clinical support.
Methods: We built CASA using Mighty Networks (MN) and assembled a leadership team that includes clinicians, researchers, and survivors with expertise in survivorship. We recruited members through SCAF’s existing Survivor Network and outreach via SCAF’s website, newsletters, and social media. Additional recruitment resulted from articles about CASA in multiple national news outlets, Internet searches, conference presentations, partner collaboration, and member invitations. We obtained analytic reports through MN to evaluate CASA’s growth and engagement during the past 12 months.
Results: By early June 2024, there were 1,435 members primarily from the U.S. (92%), plus members from 26 other countries. This compares with 868 members from the U.S. and 21 other countries in June 2023. Approximately 65% of members are survivors. Other members include co-survivors (22%), advocates, lay rescuers, and bereaved. During the 12-month period, there were: 10,058 contributions (sum of actions taken by hosts, moderators, and members including posts, “cheers,” comments, chat messages, direct [private] messages [DMs], and RSVPs); 923 active members (total members who visited); 468 unique members providing contributions.
Members have not only engaged publicly, but also privately; 189 members (21%) have sent 1,448 DMs, exceeding MN’s benchmark of 15%. Attendance at monthly webinars has ranged from 22 to 47 participants. Further, we have established a formal research protocol and are working with several researchers seeking to improve understanding of survivorship and develop resources to support survivorship.
Conclusion: CASA has grown substantially during the past 12 months and there is a high level of engagement. Goals include providing additional evidence-based content, outreach to hospitals and targeted healthcare providers nationwide including in rural areas, and further collaboration with program partners.
Newman, Mary
( Sudden Cardiac Arrest Foundation
, Wexford
, Pennsylvania
, United States
)
Presciutti, Alexander
( Massachusetts General Hospital
, Boston
, Massachusetts
, United States
)
Farrell, Joe
( Sudden Cardiac Arrest Foundation
, Incline Village
, Nevada
, United States
)
Lupton, Joshua
( Oregon Health and Science Univ
, Lake Oswego
, Oregon
, United States
)
Sanko, Stephen
( University of Southern California
, Los Angeles
, California
, United States
)
Perman, Sarah
( Yale School of Medicine
, New Haven
, Connecticut
, United States
)
Author Disclosures:
Mary Newman:DO NOT have relevant financial relationships
| Alexander Presciutti:DO NOT have relevant financial relationships
| Joe Farrell:No Answer
| Joshua Lupton:No Answer
| Stephen Sanko:No Answer
| Sarah Perman:No Answer