Psychosocial care and cardiac genetic counseling following sudden cardiac death in the young

Jodie Ingles, Cynthia Anne James

Research output: Contribution to journalArticlepeer-review

Abstract

Sudden cardiac death is a devastating event and in up to 40% of cases in the young (<. 35. years) a cause of death will remain elusive. Dealing with grief over the loss of a loved one in uncertain and unexpected circumstances poses significant psychosocial burden. It is not surprising then that poor psychological sequelae including anxiety, prolonged grief and posttraumatic stress symptoms will occur in at least 1 in 2 family members. Furthermore, ongoing worry around the suspected familial nature of the disease, risk to surviving children, need to understand and act on complex genetic information and a lack of closure relating to the cause of death make the psychosocial and clinical needs of this population unique. Cardiac genetic counselors have evolved to play a key role in the care of families following a sudden cardiac death, possessing the skills, resources and time to develop a strong rapport. While the challenges this population face are vast, there are many commonalities that exist. Here we present a case that represents many of the difficulties experienced by sudden cardiac death families, providing a review of the literature and more practical recommendations based on clinical expertise. While a family will never get over the loss of a loved one, learning to find new meaning in life and minimizing psychological difficulties should be a key consideration for any clinicians involved in the care of these families.

Original languageEnglish (US)
JournalProgress in Pediatric Cardiology
DOIs
StateAccepted/In press - Dec 15 2016

Keywords

  • Cardiac genetic counseling
  • Genetic testing
  • Psychological wellbeing
  • Sudden cardiac death in the young

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Cardiology and Cardiovascular Medicine

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