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

Introduction

Surviving sudden cardiac arrest (SCA) is a variable phenomenon and often depends on the geographical or temporal circumstances surrounding the event (Nichol et al., 2008). Efforts to improve survival after cardiac arrest have motivated significant research efforts focused on optimizing links in the Chain of Survival (Cummins et al., 1991), including early recognition of cardiac arrest; reducing barriers to bystander chest compressions; increasing access to automated external defibrillators (Berg et al., 2010); and comprehensive postarrest critical care, including targeted temperature management (Peberdy et al., 2010). There are, however, relatively few guidelines available to assist the healthcare system to provide these survivors of cardiac arrest and their support system, namely friends and/or family members (FFMs), thorough discharge-planning, rehabilitation services, and resources for adjusting to life following the index event.

Contemporary research describing survivors of cardiac arrest concentrates on quantifying functional ability and perceived quality of life. More recently, outcome studies have focused on complex cognitive or neuropsychiatric measures beyond discharge (Raina et al., 2008; Beesems et al., 2014; Balouris et al., 2015). These studies have utilized varying questionnaires or tests to report often conflicting results, although all suffer from relatively small samples and dissimilar methodologies (Rittenberger et al., 2011; Nichol et al., 2015; Smith et al., 2015).

Frequently following cardiac arrest, a procedure to place an implantable cardioverter defibrillator (ICD) is indicated. A significant body of literature describing the emotional and psychological challenges for patients with ICDs exists. Patients with ICDs commonly report anxiety and risk for maladjustment, necessitating multidisciplinary attention to psychosocial needs and proactive referrals to support groups (Sears et al., 2011; Dunbar et al., 2012; Hazelton et al., 2013; Rosman et al., 2015).

A recent systematic review identified high occurrence of reported psychological distress in patients surviving cardiac arrest (Wilder Schaaf et al., 2013). However, little attention has been directed to addressing the gaps in knowledge of how survivors experience life after cardiac arrest. An experiential understanding of this phenomenon is the first step to organizing recommendations to meet the needs of survivors, their caregivers (Brown, 2008), and the larger support system. We therefore conducted a pilot, Internet-based needs assessment survey study to identify themes unique and important to cardiac arrest survivors and their FFMs.

Materials and Methods

An Internet-based survey was sent via email to registered members of the Sudden Cardiac Arrest Foundation (SCAF) by SCAF membership coordinators. Membership to the organization is voluntary, free, and open to anyone, regardless of country of residence. Rarely, survey participation was extended to others, by direct inquiry only. Internet access was required for participation or any communication regarding the study.

Surveys were administered using an Internet-based survey tool (SurveyMonkey, Inc., Palo Alto, CA). Survey questions were developed by study authors using both discrete multiple-choice and open-ended formats. The investigators agreed on face validity by consensus and limited pilot testing on professional colleagues. Questions were organized into two sections, intended for either (1) SCA survivors or (2) FFMs of survivors. Study participation consent was assumed by voluntary participation and survey completion. This study was approved by the Institutional Review Board under expedited review.

To increase the likelihood of participation, no identifying information was collected; therefore, missing or incomplete information could not be obtained after the survey was submitted. Data were downloaded from the Internet survey instrument into an Excel (Microsoft 2010) format. The software JMP 12.1.0 (SAS, Cary, NC) was used to calculate descriptive statistics; no statistical inferences were made.

Inductive thematic analyses were completed according to accepted qualitative research methods discussed by Reissman (2008) and Burnard et al. (2008). Three independent researchers trained in qualitative research methodology conducted the thematic analyses to understand the lived experience of study participants. One researcher analyzed the open-ended responses provided by 39 FFMs, utilizing a process of constant comparison to identify patterns. These patterns were initially isolated, categorized, and condensed into themes. The lead researcher (F.B.) reviewed the major themes to ensure accurate representation of the data.

A similar process was followed by two additional researchers (R.C., C.D.), who reviewed the responses provided by SCAF survivors. This data set was split into two equal halves to promote inter-rater reliability. Each SCAF survivor's response was read through as a whole; major phrases or pivotal details were noted, including frequently occurring words, phrases, and experiences. Each researcher organized these notations and key story elements from the respective split sets into themes; quotes that supported thematic relevance were noted.

Finally, the researchers came together to compare the themes each identified among SCAF survivors. Results that were not common among both data sets were set aside and revisited to determine whether they should be discarded or collapsed into more encompassing themes. Themes that occurred in both data sets over multiple instances were organized as global themes; discarded themes generated discussion for future research. Given the study design, participants were not asked to provide feedback on the validity of the themes identified or the interpretation of their responses. Table 1 presents the open-ended questions given in the survey. The complete survey can be found in the Appendix.

Results

SCAF membership at the time of this study included 1060 people. Three email invitations were sent over the study period of July 2013 to November 2013, with roughly 30% of recipients opening the email and ∼15% of recipients clicking on the survey link. A total of 205 study surveys were attempted but 9 were blank entries. Thus 196 surveys were available for review.

Of those who answered as an SCA survivor (n = 157), 24 had suffered cardiac arrest within the last year and 40 had survived cardiac arrest for >5 years (range 5–33 years). Only two indicated they had assistance with survey completion, suggesting this study population is highly technologically functional. General characteristics of this group are presented in Table 2. Of those who answered as an FFM (n = 39), eight had FFMs who suffered a cardiac arrest within the last year and six had FFMs who survived cardiac arrest for >5 years (range 6–30 years).

Global and major themes identified from the data are listed in Table 3.

Discussion

Our investigation identified a number of major themes for survivors and their support systems. Survivors often have an innate need to share feelings with others and talk about his/her “event.” Many articulated a desire to locate and share with others who may have had a similar experience—identifying themselves as part of a subculture that had experienced something unique. Given the low survival rate in any one city, it appears this need may be best met by referral to support organizations specific to cardiac arrest. However, it is important to note that in the absence of such referrals, an organic evolution of social media groups, crossing demographics and time zones, has occurred to fill the same supportive void.

In contrast, another major theme emphasized the desire for others to understand the difference between a cardiac arrest and heart attack. This is an important distinction that the Institute of Medicine (IOM) emphasized in its recent report on cardiac arrest (IOM, 2015). Not all patients who suffer cardiac arrest have a coronary artery occlusion or require an ICD; some have a congenital anomaly or a heritable cardiac arrhythmia. Thus, each of these subsets may, in turn, have unique emotional concerns for themselves or their families and have difficulty identifying with each other.

The presence of mental health concerns, including anxiety and depression, was a major theme for survivors and has been previously described (Wilder Schaaf et al., 2013; Rosman et al., 2015). Respondents stated that these issues were typically not well addressed by medical providers, “…that anxiety just doesn't go away, that depression doesn't go away just because you're happy you survived.” Finally, the need to seek a new normal was evident from survivors. While many did return to work or school in some capacity, they felt ill-prepared for emotional changes and relationship strains. Perhaps never being sick before, respondents admitted to stress over, “People treat[ing] me as if I would die at any moment…act[ing] as if they knew what was best for me.” Summary characteristics in Table 2 highlight that even though 95.1% of survivors were discharged directly to home, many of them do not remember the hospital stay or discharge process and many admit to trouble with short-term memory on a daily basis. Thus, developing a system for discharge counseling that includes close follow-up and expert reevaluation may be necessary to reiterate instructions, expectations, and resources for survivorship.

Our qualitative survey study takes a necessary next step in assessing how patients experience life after survival of cardiac arrest. To a smaller degree, our study also provides insight into how FFMs of survivors experience living through such an event. Several recent quantitative studies suggest more patients are surviving cardiac arrest and the majority do so with “good” outcomes.⁸ Unlike other disease processes, however, such as cancer, stroke, and diabetes, there are few patient-level data available for what resources cardiac arrest survivors and their FFMs need to improve and be successful with survival after discharge from the hospital. The development of support networks and social media groups for those touched by cardiac arrest has been slow and primarily spearheaded by survivors themselves, who are experts in the experience of the event but not necessarily trained in the supportive care of others.

For FFMs, some of whom were at bedside during recovery or even first to respond to their loved one, emotional and psychological themes surfaced. Respondents emphasized a worry over whether “it,” referring to the cardiac arrest, would happen again. They agreed that there was a lack of information about what to expect after discharge. Many stated mental health resources would have been helpful for them, “…especially from someone who has gone through it, not just doctor, nurse, or social worker….” Although grief counseling is often routinely offered for FFMs of someone who does not survive cardiac arrest, these results resound the need for caregiver support, even when their loved one is able to return to work or school like “normal.”

Limitations

Our study design inherently limits the subject population to a subset of survivors with the means to have Internet access and the functional capacity to complete the survey, even with assistance. While this limited subset may not be representative of the population at large, this cohort is of significant interest. Those deemed highly functioning after cardiac arrest are more likely to deceive providers and acquaintances because they “look and act” neurologically intact before discharge from the hospital. This subset may be most neglected with regard to resources provided at discharge.

This study was meant to identify themes for further qualitative study and thus no statistical inferences can be made from the results. Survey response was relatively low (18.5%) despite attempts to encourage participation by collecting nonidentifiable data and sending the survey out multiple times. We expected a higher response rate due to the nature of the questions and the population targeted; however, the lack of nonresponder information prevents further insight. The delivery method may have contributed to this low rate since email is impersonal and easy to delete in bulk.

Larger studies with multiple survey methods (focus groups, long form interview, traditional mail, etc.) are needed to assess generalizability of these results to other survivors of cardiac arrest, including less-functional survivors. Furthermore, thematic analysis is inherently limited by the assumption that “…everyone in a thematic cluster means the same thing by what they say (or write), obscuring particularities of meaning-in-context” (Reissman, 2008). In this study this limitation was mitigated by the researchers' purposeful noninterpretation of the data provided by the participants, instead focusing exclusively on what the participants wrote in their open-ended responses as the basis of identified themes.

Conclusion

The results of our pilot study serve to inform clinicians and researchers on the complexity of cardiac arrest survival, and the themes important to both survivors of cardiac arrest and FFMs of survivors. Unlike recent studies, aimed at quantifying neurologic outcome or quality of life based on scales, the use of open-ended questions and thematic analysis provide room for honesty to describe the breadth and depth of important thoughts and feelings of having survived a cardiac arrest. The themes identified in this study should be used to explore survivors' perceptions and needs following the index cardiac arrest event and spur development of resources for survivors and FFMs.