Abstract
Introduction: Individuals living with a left ventricular assist device (LVAD) require complex, multidisciplinary team management and a dedicated caregiver throughout treatment. The purpose of this systematic literature review is to examine the current state of the science on caregiver care for those caring for end stage heart failure patients that have been implanted with a LVAD utilizing Uncertainty in Illness Theory (UIT). Methods: Five major databases were searched to identify relevant studies published in English between 1999 and September 2015. Each study was abstracted and confirmed by two authors and was identified and theoretically categorized. Analyses across studies were also performed. Results: Twenty-two eligible papers were included in this review. The majority of included studies were qualitative in nature with only four attempting to quantify caregiver experiences. Caregiver experiences were organized into factors leading to uncertainty, appraisal of uncertainty, coping processes and long-term outcomes. Anxiety, depression, post-traumatic stress syndrome, distress, fears, and sexual concerns are negative psychosocial factors experienced from uncertainty, while caregivers also experience hope and optimism. Adaptation occurs when the caregivers have accepted their role a caregiver. Conclusions: This is the first comprehensive theory based review in LVAD caregiver literature. Our analysis provides evidence for a rapidly developing science that is based largely on observational and qualitative research. However, few studies examine the caregiver and LVAD patient as a dyad. Longitudinal and quantitative research studies are needed with sufficiently large sample sizes to examine the variables in caregiving experience and how it impacts patient outcomes to inform future interventions.
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