Abstract
Background Delivering care that is responsive to who or what is most important to patients and family caregivers is a key aspect of quality care, yet it remains unclear how clinicians can best support individuals in expressing their personal values. We aimed to describe patient- and family caregiver-identified facilitators and barriers to engaging in values discussions with clinicians following implantation of a left ventricular assist device (LVAD). Methods and results Using a qualitative descriptive approach, patients with an LVAD and their caregivers participated in one-on-one semi structured interviews and self-reported sociodemographics (January 2023-July 2023). Qualitative data were analyzed using thematic analysis and descriptive statistics were computed for quantitative data. Results Patients (n=27; ages 30-76 years) were predominantly male (59%) and non-Hispanic Black (67%). Caregivers (n=21; ages 27-76) were female (76%), non-Hispanic Black (67%), and a spouse/partner (62%). Facilitators (5 shared across patient/caregiver groups; 8 unique across patient/caregiver groups) included a perceived close relationship (patient/caregiver), values alignment (patient/caregiver), clinician discussion initiation (patient/caregiver), facing an impending decision (patient/caregiver), 1-on-1 dyadic interactions (patient/caregiver), being assertive (patient), positive dyadic communication (caregiver), and involvement of a third party (caregiver). Barriers (2 shared; 7 unique) included belief their values are already known (patient/caregiver), sensitivity about values (patient/caregiver), uncertainty about timing (patient), poor clinical communication (patient), patient hopelessness (patient), perceived lack of clinician time (caregiver), and having a reserved personality (caregiver). Conclusion Findings offer insight into actionable facilitators and barriers to discussions promoting incorporation of patient and family values into LVAD maintenance and chronic disease management.
Published Version
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