Threats to Resilience: How Well are We Preparing Caregivers of Patients Post-Mechanical Circulatory (MCS) Implant to Their Adjustment at Home?

Abstract

The role of the Left Ventricular Assist Device (LVAD) caregiver is crucial to preventing adverse patient outcomes and promoting patient adjustment post-discharge. There is a lack of understanding around caregiver preparedness and support. Expanding on our previous work of caregiver resilience and stress, we sought to identify caregiver preparedness and threats to developing caregiver resilience. A purposeful sample of caregivers (n =13: 77% female caregivers; 62% white; 77% working; age range 34-82) of LVAD patients (5 months to 6 years post-implantation) was recruited at a single center. Eight semi-structured group interviews were conducted. Qualitative content analysis was used to analyze caregiver interview transcripts. Caregivers expressed several themes around barriers to preparedness and resilience. 1) Feeling Unprepared and Emotionally Overwhelmed: "I'm afraid I am going to kill him" "I should have seen a counselor before I left." 2) Needing Connection with Other Caregivers: "I wish I could have spoken to a caregiver that went through this already." 3) Being Hyper Vigilant: "I make him dinner⋯I look over and he's eating something (else)⋯full of sodium." 4) Grieving Loss of Partnership: "I want to be seen as his wife and not his nurse." 5) Lack of Self-Care: "You have to care for yourself but sometimes it's hard, you feel guilty." "This is the first time I've been separated from my loved one, and it's so good to be able to sit with someone having the same experience." Our study identified threats to caregiver resilience and opportunities to support them in their new role upon returning home. These findings can be used to develop interventions that support caregivers as they help their loved ones and themselves through the MCS recovery.