ABSTRACT
BACKGROUND: The responsibility of caregiving for patients requiring left ventricular assistance device (LVAD) support may be significant. However, little is known about their experience. Data from the Interagency Registry for Mechanically Assisted Circulatory Support (2006-2009) reported that 1722 patients had received LVADs as a bridge to transplantation, recovery, or destination therapy. The use of this advanced technology in the management of endstage heart failure is expected to continue, suggesting increased involvement of family members and significant others. The purpose of this qualitative study was to describe the experiences of caregivers of patients who received LVAD therapy as a bridge to transplantation. METHODS: Semistructured interviews allowed participants to describe their experiences as caregivers. Interviews were audiotape-recorded and transcribed verbatim. An analysis was conducted using Sandelowski's three-step process for the analysis of phenomenological data: data dwelling, open coding, and data reduction. RESULTS: Participants (n=5 women and 1 man; age, 51 years; range=44 to 66 years; duration of caregiving, 183.9 days; range, 26 to 372 days; relationship to patient: spouse=3, parent=1, significant other=1, and friend=1) were designated caregivers of patients discharged home with an LVAD. Two themes emerged: sacrifice and moving beyond. Caregivers sacrificed relationships with friends and family, jobs and livelihood, health, and peace of mind in their roles as caregivers. "Moving beyond" reflected coping and adaptation to the sacrifices of being a caregiver. CONCLUSIONS: Experiences described by caregivers suggest that they successfully incorporated the role of caregiver for patients with a complex therapeutic regimen into their daily lives. The specific findings should guide healthcare professionals in their efforts to support caregivers.
