“Things That You Thought Mattered, None of That Matters”

Abstract

Background Intentional exploration, or elicitation, of patient and family values—who/what matters most—is critical to the delivery of person-centered care, yet the values elicitation experiences of family caregivers have been understudied. Understanding caregiver experiences discussing, reflecting upon, and acting on their values is critical to optimizing health decisions after left ventricular assist device (LVAD) implantation. Objective The aim of this study was to explore the values elicitation experiences of family caregivers of individuals with an LVAD in the postimplantation period. Methods This was a qualitative descriptive study of LVAD caregivers recruited from an outpatient clinic in the southeast United States. After completing one-on-one semistructured interviews, participants' transcripts were analyzed using thematic analysis. Results Interviewed caregivers (n = 21) were 27 to 76 years old, with 67% African American, 76% female, 76% urban-dwelling, and 62% a spouse/partner. LVAD implantation was an impactful experience prompting caregiver reevaluation of their values; these values became instrumental to navigating decisions and managing stressors from their caregiving role. Three broad themes of caregiver values elicitation experiences emerged: (1) caregivers leverage their values for strength and guidance in navigating their caregiving role, (2) LVAD implantation prompts (re)evaluation of relationships and priorities, and (3) caregivers convey their goals and priorities when deemed relevant to patient care. Conclusions Having a care recipient undergo LVAD implantation prompted caregivers to reevaluate their values, which were used to navigate caregiving decisions and stressors. Findings highlight the need for healthcare professionals to engage and support caregivers after LVAD implantation.