Abstract 13954: Family Caregivers’ Experience of Caring for Patients Implanted With Left Ventricular Assist Device: A Mixed-Method Study

Abstract

Introduction: Informal caregivers of patients with left ventricular assist device (LVAD) juggle benefits and burdens of caregiving and experience uncertainty of LVAD trajectory. This study explored the experience of caring for patients with LVAD and factors leading to uncertainty among caregivers. Methods: This mixed-methods, descriptive study included online surveys and focus groups. Family caregivers (N=140) were recruited from Facebook communities for the online survey (demographic variables, patient factors, Uncertainty in Illness Scale, Medical Outcome Study Social Support Survey, and CAregiver Perceptions About Communication with clinical Team member measure) and a subset of these (N=20) were recruited for online focus groups. Data were summarized and quantitative / Qualitative data compared for convergence. Results: Caregivers averaged 54 years (SD=12), were female (89%) spouses (66%) who had been caregiving for less than 5 years (83%). The quantitative results regarding uncertainty and its associated variables: social support, perception of change after implant, and communications with health care providers were mirrored in the content of three of the categories that evolved from the qualitative analysis. Caregivers with lower social support reported high uncertainty in focus groups and had higher uncertainty scores. Those with higher social support reported lower uncertainty. Caregivers with higher uncertainty reported varying levels of communication with providers. Majority of caregivers reported life changed for the worse (increase burdens, lifestyle adjustments, patient care regime) after LVAD implantation regardless of their uncertainty levels. Conclusions: Caregivers' experiences varied as they adjusted to this complex life-transforming experience. Overall, the survey and focus group data were convergent. Caregivers with higher social support and better communication with health care providers may experience less uncertainty. This study underscores the need to enhance social support and communication with healthcare team to decrease uncertainty and improve the caregiver experience.