From Insiders' Perspectives: Adjusting to Caregiving for Patients with Left Ventricular Assist Devices

Abstract

Context Caregivers for patients with a long-term implantable left ventricular assist device have a very important role in helping patients maintain their health and well-being and attain an improved quality of life. Although the caregiving tasks, burdens, and challenges of family caregivers have been described in the literature, we know little about how caregivers adjust to or accommodate the new role in their lives. Objective To explore and describe the lifestyle adjustments of caregivers for adults living with a left ventricular assist device as a bridge to heart transplant or destination therapy. Design A hermeneutic phenomenology was used as a guide for interviews and analysis of the data. Participants A purposive convenience sample of 5 women, aged 39 to 71 years, who had served as caregivers of a left ventricular assist device patient for at least 3 months. Setting Recruitment and data collection (interviews) were conducted in an outpatient clinic for the mechanical circulatory support program of a large academic medical center in the Midwest. Results Three main themes (caregiving: a “24/7” responsibility, coping strategies, and satisfaction) and 13 subthemes emerged from the data. Conclusions Lifestyle adjustments with caregiving may become easier over time, and with effective use of coping strategies, caregivers accept their new caregiving role as part of life.