Survivor Support

Patient Support and Reintegration

Impact of SCA

When a loved one experiences sudden cardiac arrest, family members are devastated and shocked by the swiftness and cruelty of the event, much the same as families of other victims of tragedies such as motor vehicle collisions. The ability to understand an SCA event is quite different from other tragedies, however, because few people understand what SCA is, or how their loved one came to be a victim. Whether or not their loved one has survived, all families need to leave the hospital with an informed understanding of sudden cardiac arrest and the ability to access resources they may need as they take back their lives.

For survivors and their families, leaving the hospital after experiencing a sudden cardiac arrest can be a terrifying experience. Many survivors have received an implantable cardioverter defibrillator (ICD) to prevent future fatal arrhythmias and may have multiple concerns related to the device.1-5

Up to 40% of survivors may experience mild to moderate cognitive impairments following arrest. The most common cognitive issue is thought to be memory loss or delayed recall.6

An Understanding Boss“At the office, my husband’s boss and co-workers let him concentrate fully on me and my recovery. There was no one counting sick-time hours or danger of a reduced paycheck. He was told to take the time he needed. What’s more, the boss even told him that he couldn’t return full-time until the three of us had lunch together”.

“He was true to his word and my husband was able to do what needed to be done at home for his wife and two young children without being concerned about the impact on his work life.”

Basic Needs Upon Hospital Discharge

  • At discharge, survivors and families should receive referrals to resources for any additional physical rehabilitation programs to help them cope with existing brain injury.
  • Honest and specific answers to questions are highly appreciated by survivors and families.
  • Survivors welcome resources they can access for accurate information about their condition. Resources given at hospital discharge are most helpful if they have been screened for accuracy and relevance to the patient’s specific diagnosis. For example, information about SCA caused by an inherited disorder may not be relevant for someone who experienced arrest due to a myocardial infarction. (Sources of patient information are included in the Appendix.)
  • Knowledge of what to expect and how to react when symptoms are experienced after hospital discharge can be very helpful to the patient. For example, what types of symptoms should prompt a call to 911; when is it appropriate to call my doctor?
  • Although the implantation of an internal cardioverter defibrillator (ICD) can provide some reassurance that sudden death will not occur again, individuals cannot help but worry and wonder each time there is a twinge of pain or feeling of discomfort. Up to 35% of patients develop anxiety disorders following ICD placement10 and need to learn coping skills as well as what to do if they receive a shock from a new ICD.
  • Information should be available that both advocates the use of counseling and support groups, and gives appropriate referrals to individuals and groups experienced with survivor concerns. Often survivors have very real and potentially paralyzing concerns about how to resume their lives. Do I plan for the future or not? Referral to counselors who are experienced with these issues, specifically for this population, can help survivors begin to deal with and resolve their concerns.

Support Groups

Within a support group, members provide each other with various types of help. Generally support groups provide peer-to-peer or patient-to-patient support for a particular shared, and generally burdensome, characteristic. Help may take the form of providing and evaluating relevant information, relating personal experiences, listening to and accepting others’ experiences, providing sympathetic understanding, and establishing social networks. A support group may also work to inform the public or engage in advocacy.

Insights from a Survivor“Planning for your own imminent death when you have just survived SCA may sound like a contradiction, but is very real.”

“I was 33 years old when I experienced a sudden cardiac arrest. I had been saving for retirement, but had always wanted to travel more. Trying to balance the need to plan for a future with the likelihood of there not being one made it very difficult for me to continue to save money for things in the distant future.”

“During my first post-arrest follow up appointment with my cardiologist, I asked if I should continue saving for retirement or if I should spend the money on a trip around the world. He told me to keep saving. This was very good advice. However, I really did want to know if I was going to die quickly so that I could do some very cool stuff with the money I wouldn’t be using in retirement!”

What Makes a Good Support Group?

Although the needs and potential benefits may be different for each person, there are some basic components that make a particular support group effective for an individual. These include:

  • Provision of current and reliable information
  • The ability to respond in a timely manner to individuals and their questions
  • Regularly scheduled meetings and or correspondence such as newsletters
  • Access to appropriate professional support, if needed
  • Strong leadership and a clear confidentiality policy
  • Content relative to the members specific needs: common interests and experiences and other members that can relate to what is happening to you

Starting a Support Group

Establishing a new support group is time consuming and requires dedication. Often help can be enlisted from a local hospital or religious organization to get the group started. Studying existing support groups can be helpful as it may provide information about a group structure that works well, or can help identify educational materials that have already been developed. Once a group is started, it may be of benefit to make sure local organizations or hospitals are aware of its existence so that they can offer support and refer individuals to the group.

SCA Survivor Groups and Advocacy

Survivor groups can provide a focal point for members to inform the public about sudden cardiac arrest. There are a number of advocacy activities that can help to improve survival from SCA within a community.

Some activities that survivor groups can support include:

  • Sharing survivor stories. This can have powerful influence on the public and be leveraged to challenge the public to learn CPR and place AEDs in their neighborhoods.
  • Increasing awareness of SCA using media campaigns and fund raisers such as sports competitions. Funds raised can be used to purchase AEDs for local businesses or churches.
  • Taking an active role in providing CPR training and in encouraging citizens to provide bystander CPR.