Abstract
Introduction: Caregivers of patients with left ventricular assist devices (LVAD) experience significant strain in caring for patients after device implant, yet few studies have captured underlying caregiver needs and the impact on caregiver health. Aim: To describe caregiver challenges, needs, and health outcomes at three distinct time points following LVAD implant. Method: Using a cross-sectional, concurrent mixed methods design, patients were interviewed at 1 of 3 time points during LVAD recovery: at hospitalization after LVAD implant (n=3), at 1 month (n=9) , or 3 months (n=7) after returning home. Key health outcomes (measures) included caregiver Roles and Responsibilities (CRRS), mental health (SF-12 MCS), and physical function (Duke Activity Status Index, DASI). Qualitative interviews were transcribed verbatim and analyzed using thematic analysis; qualitative and quantitative findings were integrated using matrix displays across time points. Results: Caregivers (N=19) were 60.0±9.6 years old, 68% married, 88% female, 56% with 2 or more comorbidities, and 56% caring for Destination Therapy patients. Three phases of caregiving were characterized. At 1 month, caregiver burden was highest (CRRS: hospitalization after implant= 32±12.7; 1 mo = 51.6±7.8; 3 mo = 47.3±8.9); physical function lowest (DASI: hospitalization after implant = 53.7±5.3; 1 mo = 38.1±9.7; 3 mo = 42.1±15.6); and mental health highest (SF-12: hospitalization after implant = 43.4±7.8; 1 mo = 55.8±25.9; 3 mo = 48.3±26.8). Qualitative analyses validated caregiving challenges and health impact at 1 month (isolation, constant caregiving, uncertainty) and low physical function (work of caregiving, disrupted sleep), while simultaneously underscoring positive mental health effects (gratitude for a second chance, establishing routines, experiencing support). Conclusion: The characterization of three phases of caregiving after LVAD implantation provides important new insights necessary for targeted interventions for LVAD caregivers. Identified targets to relieve caregiver burden and improve adjustment after patients are discharged home include the need for relief from isolation and 24/7 caregiving, promotion of sleep and routines, and social support.
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