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 abo...
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| Format: | Article |
| Language: | English |
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Elsevier
2025-07-01
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| Series: | Resuscitation Plus |
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| Online Access: | http://www.sciencedirect.com/science/article/pii/S2666520425001237 |
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| author | Lorenzo Gamberini Kirstie L. Haywood Sebastian Schnaubelt Mazarine Thyssens Federico Semeraro Koenraad G. Monsieurs Sachin Agarwal Mari Blek-Vehkaluoto Erga Cerchiari Johan Israelsson Mary Newman Paul Swindell Jellis Vaes Philipp Tinguely Elena G. Bignami Bernd W. Böttiger Nino Fijačko Carolina Malta Hansen Andrew Lockey Bibiana Metelmann Camilla Metelmann Theresa M. Olasveengen Giuseppe Ristagno Hans van Schuppen Kaushila Thilakasiri |
| author_facet | Lorenzo Gamberini Kirstie L. Haywood Sebastian Schnaubelt Mazarine Thyssens Federico Semeraro Koenraad G. Monsieurs Sachin Agarwal Mari Blek-Vehkaluoto Erga Cerchiari Johan Israelsson Mary Newman Paul Swindell Jellis Vaes Philipp Tinguely Elena G. Bignami Bernd W. Böttiger Nino Fijačko Carolina Malta Hansen Andrew Lockey Bibiana Metelmann Camilla Metelmann Theresa M. Olasveengen Giuseppe Ristagno Hans van Schuppen Kaushila Thilakasiri |
| author_sort | Lorenzo Gamberini |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-27d595b4beb84a0dbb2dbbf2a53a3bc1 |
| institution | OA Journals |
| issn | 2666-5204 |
| language | English |
| publishDate | 2025-07-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Resuscitation Plus |
| spelling | doaj-art-27d595b4beb84a0dbb2dbbf2a53a3bc12025-08-20T02:17:28ZengElsevierResuscitation Plus2666-52042025-07-012410098610.1016/j.resplu.2025.100986Organisations supporting cardiac arrest survivors: An exploratory survey of organisational structures and activitiesLorenzo Gamberini0Kirstie L. Haywood1Sebastian Schnaubelt2Mazarine Thyssens3Federico Semeraro4Koenraad G. Monsieurs5Sachin AgarwalMari Blek-VehkaluotoErga CerchiariJohan IsraelssonMary NewmanPaul SwindellJellis VaesPhilipp TinguelyElena G. BignamiBernd W. BöttigerNino FijačkoCarolina Malta HansenAndrew LockeyBibiana MetelmannCamilla MetelmannTheresa M. OlasveengenGiuseppe RistagnoHans van SchuppenKaushila ThilakasiriDepartment of Anesthesia, Intensive Care and Prehospital Emergency, Maggiore Hospital Carlo Alberto Pizzardi, Bologna, ItalyWarwick Medical School, University of Warwick, England, United KingdomPULS – Austrian Cardiac Arrest Awareness Association, Vienna, Austria; Emergency Medical Service, Vienna, Austria; Department of Emergency Medicine, Medical University of Vienna, AustriaEuropean Resuscitation Council, Niel, BelgiumDepartment of Anesthesia, Intensive Care and Prehospital Emergency, Maggiore Hospital Carlo Alberto Pizzardi, Bologna, Italy; European Resuscitation Council, Niel, Belgium; Corresponding author at: European Resuscitation Council, Niel, Belgium. Department of Anesthesia, Intensive Care and Prehospital Emergency, Maggiore Hospital Carlo Alberto Pizzardi, Bologna, Italy.Department of Emergency Medicine, Antwerp University Hospital and University of Antwerp, BelgiumBackground: 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.http://www.sciencedirect.com/science/article/pii/S2666520425001237Cardiac arrestSurvivorsSurvivorshipFamilySelf-Help GroupsResuscitation |
| spellingShingle | Lorenzo Gamberini Kirstie L. Haywood Sebastian Schnaubelt Mazarine Thyssens Federico Semeraro Koenraad G. Monsieurs Sachin Agarwal Mari Blek-Vehkaluoto Erga Cerchiari Johan Israelsson Mary Newman Paul Swindell Jellis Vaes Philipp Tinguely Elena G. Bignami Bernd W. Böttiger Nino Fijačko Carolina Malta Hansen Andrew Lockey Bibiana Metelmann Camilla Metelmann Theresa M. Olasveengen Giuseppe Ristagno Hans van Schuppen Kaushila Thilakasiri Organisations supporting cardiac arrest survivors: An exploratory survey of organisational structures and activities Resuscitation Plus Cardiac arrest Survivors Survivorship Family Self-Help Groups Resuscitation |
| title | Organisations supporting cardiac arrest survivors: An exploratory survey of organisational structures and activities |
| title_full | Organisations supporting cardiac arrest survivors: An exploratory survey of organisational structures and activities |
| title_fullStr | Organisations supporting cardiac arrest survivors: An exploratory survey of organisational structures and activities |
| title_full_unstemmed | Organisations supporting cardiac arrest survivors: An exploratory survey of organisational structures and activities |
| title_short | Organisations supporting cardiac arrest survivors: An exploratory survey of organisational structures and activities |
| title_sort | organisations supporting cardiac arrest survivors an exploratory survey of organisational structures and activities |
| topic | Cardiac arrest Survivors Survivorship Family Self-Help Groups Resuscitation |
| url | http://www.sciencedirect.com/science/article/pii/S2666520425001237 |
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