Organisations supporting cardiac arrest survivors: An exploratory survey of organisational structures and activities.

Background: Cardiac arrest survivors have diverse needs beyond healthcare, including spirituality, social networks, practical, legal, and economic matters, highlighting the need for community-based support. While some non-governmental organisations support various patient groups, little is known about those dedicated to cardiac arrest survivors. The European Resuscitation Council (ERC) conducted a survey to identify and understand these organisations' structures and activities. Methods: An internet survey developed by the ERC was disseminated through media channels, national resuscitation councils, and social networks. Responses were verified against publicly available information to confirm declared activities and sustained support efforts. Organisations were classified based on whether their primary focus was on cardiac arrest survivors or if support was a secondary activity. Results: Of fifty-six responses, eight organisations were identified as providing structured, continuous support. Six primarily focused on cardiac arrest survivors, while two had a broader scope. Most were established after 2000, with six in Europe and two in the United States. Membership ranged from 520 to 3000 survivors. Common activities included peer support and distributing information materials. Connections with healthcare systems varied, with three reporting none. Only two were represented in their national resuscitation councils (NRCs). Conclusions: Organisations supporting cardiac arrest survivors are scarce but address important unmet needs. However, public presence is limited, and ties with institutions remain weak. Strengthening collaborations with healthcare providers, NRCs, and stakeholders could enhance support networks and improve long-term post-resuscitation care.