Learning to Live With a Ventricular Assist Device: Patient, Caregiver, and Clinician Concerns Following Implantation and Hospital Discharge

Patients undergoing ventricular assist device (VAD) implantation and their caregivers must attain knowledge and skills to perform VAD self-care safely. Little is known about the similarities and differences among patients, caregivers, and VAD clinicians related to VAD self-care training and management. This study explored the perspectives of 15 VAD patients, 12 VAD caregivers, and 18 VAD clinicians through individual semi-structured interviews focused on understanding barriers related to VAD self-care training and concerns about VAD self-care post-discharge. We identified four major themes (training related, care transitions, fear and uncertainty, clinical consequences). All participant groups discussed concerns related to daily VAD self-care and the transition home after implantation. Caregivers and clinicians discussed the steep VAD self-care learning curve. Caregivers and patients discussed fears in general (eg, constant fear) and specific terms (eg, VAD malfunction), whereas clinicians who discussed fear/uncertainty identified strategies for dealing with emergent situations. Concerns regarding adverse events and non-adherence arose primarily from clinicians. Although some alignment was found, concerns varied among stakeholders. A common understanding of these nuanced concerns may improve VAD self-care training and the preparation of patients and caregivers.