Embodying a New Meaning of Being At Risk

Abstract

Arrhythmogenic Right Ventricular Cardiomyopathy/Dysplasia (ARVC/D) is a genetic condition that can cause fatal arrhythmias. The implantable cardioverter defibrillation (ICD) is a primary treatment for ARVC/D. Using a grounded theory approach, this study examines the experiences of 15 individuals living with an ICD. The ability to cope with and adjust to having an ICD is influenced by the acceptance of the ICD as something needed to survive, an understanding of the ICD’s function, existing support networks, and ones’ ability to manage everyday challenges. Coping well requires reshaping ideas about the meaning of being at risk and understanding how the ICD fits into that changing personal risk narrative. A thorough understanding of the unique needs of individuals with ARVC/D and of the specific factors contributing to the psychosocial distress related to having an ICD (vs. having the disease itself) is needed. Nurses must be prepared to provide ongoing support and education to this population.

Understanding arrhythmogenic right ventricular cardiomyopathy

“…These patients also may have family members affected by ARVC or SCD and have anxiety or guilt related to loss or fear about risk to their children 12. Although the psychosocial implications for patients with ARVC have not been studied extensively, other inherited cardiomyopathies or dysrhythmia syndromes such as hypertrophic cardiomyopathy and Brugada syndrome have been more widely researched, particularly with regard to ICD-related concerns, and may be applicable across this inherited disease spectrum 12,13. Recognizing the psychosocial effect of necessary lifestyle adjustment, including living with an ICD, is important in any clinical setting.…”

“…Recognizing the psychosocial effect of necessary lifestyle adjustment, including living with an ICD, is important in any clinical setting. Patients with ARVC have unique and diverse needs that may evolve at different stages of life, and ongoing assessment and sensitivity to these needs is important for clinicians in any specialty who are treating patients with ARVC 13…”