JMIR Publications

ABSTRACT

Background:

Survivors of cardiac arrest often face multifaceted challenges – cognitive, emotional, physical, and existential – that extends beyond clinical recovery. Despite these long-term consequences, follow-up care is often insufficient, and access to reliable information and support remains limited. Broader initiatives to address post-cardiac arrest care are still lacking. This qualitative study is part of a larger effort to co-create and evaluate a digital support program intended as a complement to existing healthcare services and assist survivors in managing life after cardiac arrest.

Objective:

The primary aim was to explore survivors’ perspectives on digital support and identify relevant content and delivery formats for a web-based support and learning platform.

Methods:

Eight women and 12 men (aged 44-80) were recruited via a moderated peer network for cardiac arrest survivors. Time since cardiac arrest ranged from 3 months to 19 years. Data were collected between November 2024 and February 2025 through three individual and four focus group interviews, analysed with qualitative content analysis.

Results:

Overall, surviving a cardiac arrest was described as a life-altering event with lasting emotional, cognitive, and practical consequences. Participants highlighted major gaps in post-cardiac arrest care – marked by regional disparities, fragmented information, and limited psychosocial support – which left many feeling disoriented, isolated, and underinformed during recovery. These unmet needs were reflected in participants’ responses to the idea of a national digital support programme, which they considered a potentially valuable complement to standard care – offering accessible, reliable guidance and support throughout recovery. Three main categories and six sub-categories were identified as key elements, reflecting survivors’ needs and preferences for digital support. Clear and tailored digital communication was considered essential to improve understanding and usability. Survivors requested content that offered Guided support throughout the recovery process, including information on prehospital and hospital care, discharge, and follow-up. Managing life post-cardiac arrest captured preferences for guidance on medications, treatment options, lifestyle changes, and rehabilitation. Participants emphasized the need to Address emotional and physical aftermath, such as pain, fear of movement, sleep disturbances, cognitive challenges, fatigue, and psychological distress. In Social connection and intimacy – beyond survival, survivors highlighted the importance of addressing relationship dynamics, intimacy and personality changes. Lastly, Family members are essential for support, yet often vulnerable and forgotten captured the wish for a dedicated section for family members and bystanders.

Conclusions:

Findings underscore the need for a tailored digital support programme that addresses long-term cognitive, physical, and emotional recovery needs to promote quality-of-life of cardiac arrest survivors. Such a programme should be accessible, holistic and personalized, bridging existing gaps in care, and extend support beyond clinical settings.