Surviving Sudden Cardiac Arrest: A Pilot Qualitative Survey Study of Survivors

Abstract

Research describing survivors of sudden cardiac arrest (SCA) has centered on quantifying functional ability, perceived quality of life, and neurocognitive assessment. Many gaps remain, however, regarding survivors' psychosocial perceptions of life in the aftermath of cardiac arrest. An important influence upon those perceptions is the presence of support and its role in a survivor's life. An Internet-based pilot survey study was conducted to gather data from SCA survivors and friends and/or family members (FFMs) representing their support system. The survey was distributed to members of the Sudden Cardiac Arrest Foundation (SCAF) via the Internet by SCAF leadership. Questions included both discrete multiple-choice and open-ended formats. Inductive thematic analyses were completed by three independent researchers trained in qualitative research methodology to identify primary themes consistent among study participants until thematic saturation was achieved. No statistical inferences were made. A total of 205 surveys were returned over the 5-month study period (July to November 2013); nine were received blank, leaving 196 surveys available for review. Major themes identified for survivors (N = 157) include the significance of and desire to share experiences with others; subculture identification (unique experience from those suffering a heart attack); and the need to seek a new normal, both personally and inter-personally. Major themes identified for FFMs (N = 39) include recognition of loved one's memory loss; a lack of information at discharge, including expectations after discharge; and concern for the patient experiencing another cardiac arrest. This pilot, qualitative survey study suggests several common themes important to survivors, and FFMs, of cardiac arrest. These themes may serve as a basis for future patient-centered focus groups and the development of patient-centered guidelines for patients and support persons of those surviving cardiac arrest.

European Resuscitation Council and European Society of Intensive Care Medicine 2015 guidelines for post-resuscitation care

“…The active engagement of survivors and their family members to better understand their needs and how they would like to receive such information, is recommended as part of this process [437]. Information should cover not only medical subjects such as cardiac disease, risk factors, medication and ICD, but can also address other topics such as potential physical, cognitive and emotional changes and fatigue, resuming daily activities, driving and work, relationship and sexuality [477,[488][489][490][491].…”

Understanding the lived experiences of short‐ and long‐term consequences on daily life after out‐of‐hospital cardiac arrest. A focus group study

“…These high rate disabilities are reported to negatively affect daily activities, the ability to interact in social life, the return to work (Lilja, 2017;Lilja et al, 2018) as well as quality of life after survival (Moulaert et al, 2010). Studies have investigated resuscitation experiences in a broad population of sudden cardiac arrest survivors (Brännström et al, 2018;Bremer et al, 2019;Forslund et al, 2014Forslund et al, , 2017Ketilsdottir et al, 2014;Sawyer et al, 2016). However, looking solely at OHCA survival, data in these studies have been collected early after the event (Forslund et al, 2014(Forslund et al, , 2017.…”

“…Despite these significant insights, it is not well described, how patients adapt to, are troubled by and manage later effects in daily life after resuscitation. Moreover, most previous studies have taken a non‐theoretical approach in the intertextual interpretations (Brännström et al., 2018; Bremer et al., 2019; Forslund et al., 2014; Ketilsdottir et al., 2014; Sawyer et al., 2016). To our knowledge only one study has used theory to deepen the understanding of surviving OHCA (Forslund et al., 2017).…”

Trapped in a disrupted normality: Survivors’ and partners’ experiences of life after a sudden cardiac arrest

“…Hence, a significant number of 'survivors' are living with the consequence of cardiac arrest. However, we know little about the natural history of such recoveries, or the unmet health and social care needs for this emerging group [5][6][7][8] , many of whom will be coping with the consequences of anoxic brain injury 9 .…”