Emotional experiences of caregivers of patients with a ventricular assist device.

CONTEXT: Little is known about the stresses experienced by caregivers of patients discharged home with a ventricular assist device. OBJECTIVE: To describe the lived experience of caregivers of patients who were discharged home with a ventricular assist device. DESIGN: The study used a phenomenological framework to conduct semistructured interviews guided by 2 psychologists using a focus group setting. PARTICIPANTS: Interviews of 13 caregivers of 9 patients discharged to home with a ventricular assist device between March 2004 and June 2007 were recorded, transcribed, and analyzed. RESULTS: Four themes emerged during the interviews: anxiety, initially exhibited as profound shock; loss of a loved one, of their lives, of freedom and independence; burden, both the physical burden and the burden of responsibility; and finally coping through faith, acceptance, empathy, and social support. CONCLUSION: Caregivers of patients discharged home with a ventricular assist device experienced significant pressures that changed over the duration of support with the ventricular assist device. Caregivers described their coping mechanisms in dealing with shock, loss, and burden. Understanding the fluctuating needs of caregivers will enable teams to provide interventions based on the situation. Future care guidelines should address the significant stresses placed on caregivers of recipients of a ventricular assist device.