Co-Designing a mobile health intervention for cardiac arrest survivors and co-survivors: Mapping experiences and unmet needs to digital design features

Abstract

Background As survival rates for sudden cardiac arrest (SCA) have increased, so has the imperative for advancing survivorship support. Previous work suggests a massive gap in understanding of post-acute care needs and how best to support survivors and families (co-survivors) after hospital discharge. Although clinical models for post-SCA care exist, there have been few studies that seek to understand cardiac arrest survivor and importantly co-survivor experiences. Applying qualitative methods can be valuable to identify opportunities for developing tailored support that is grounded in the needs and experiences of survivors and co-survivors. Aims This study aimed to specifically understand out-of-hospital cardiac arrest (OHCA) survivor and co-survivor perspectives, experiences and support needs during the first year of their survivorship journey and to identify pain points where digital interventions could play a role in enhancing survivorship experiences. Methods We used an interpretive descriptive approach to qualitative inquiry within an overarching co-design process. As an additional means of triangulation, focus groups and individual interviews with clinicians and rehabilitation specialists were also conducted. Results Survivors (n = 9) and spouses (n = 5) of survivors, averaging 7.71 years since SCA, participated in four focus groups. One focus group and two individual interviews were conducted among six clinicians. Two major themes reflect OHCA (co-)survivorship experiences and support needs: (1) navigating new territory without a map, and (2) the impact of time and evolution of needs. Within each theme, several sub-themes indicate pain points for OHCA survivors and co-survivors, highlighting specific opportunities to design support that enhances recovery experiences for both. Conclusions By first understanding survivor and co-survivor experiences of recovery along with where they felt supports were missing, we identified key pain points that represent opportunities for enhancing recovery experiences through digital health. The results of this work contribute significantly to the broader cardiac arrest survivorship agenda by not only confirming key challenge areas, support needs and “turning points” of cardiac arrest survivors and co-survivors but highlighting the novel concept of the evolution of survivorship needs over time, a key consideration for intervention development.