Abstract 273: What Makes A Good Caregiver For A Destination Therapy LVAD Patient?

OBJECTIVES: The importance of caregivers for destination left ventricular assist device (LVAD-DT) patients is generally recognized, but there is little focus on how to select and prepare the caregiver for this role. METHODS: LVAD-DT patients, caregivers, physicians, social workers and coordinators from 3 institutions participated in qualitative interviews. There were 12 providers (5 VAD coordinators, 3 social workers, 2 surgeons , 2 medical directors) and 13 patients/caregiver pairs (all patients are male; all but 1 caregiver are female, 6 caregivers are over 70). Seven of the 13 patients did not have Advance Directives. Caregivers completed the City of Hope Caregiver Quality of Life (CHQOL-C) survey. Interviews were analyzed using grounded theory. Mean subscale scores on the CHQOL-C were used to contrast caregivers’ responses above and below the mean. RESULTS: Providers emphasized that caregivers must be physically able, emotionally stable and committed. They stated that family members with a health care background are ideal candidates and used phrases such as “meticulous with care” and “serene” to describe competent caregivers. However, they also acknowledged that caregivers can become “overwhelmed” or “anxious,” with the “reality of the daily grind.” They were critical of family members who do not “step up.” Providers did not acknowledge that caregivers’ roles might change over time and did not identify many social supports outside of the LVAD-DT community. Caregivers and patients emphasized effects of LVAD-DT on the nature of their relationships, daily activities and social lives. Caregivers described concerns about the patient’s limited stamina and mobility. Several mentioned that they no longer have an intimate relationship with their spouse. Some described a profound sense of isolation. Caregivers described many home management tasks and for some, almost total physical care of the patient. Caregivers balanced comments such as “of course I love him” with the fact that caregiving is “very trying.” Some described difficulties with patients who have become “more demanding.” Several contrasted the volume of information they received about what to expect with the sense that they were unprepared for the magnitude of the changes. Caregivers were unprepared for discussions about advance directives. Caregivers whose CHQOL-C social subscale score fell above the mean of 6.2 (SD 2.23) on a 10 point Likert scale tended to express more positive coping strategies. By contrast, caregivers with worse quality of social life expressed more financial concerns and more concerns about their own health. Some caregivers described the LVAD as “a blessing” but others referred to it as a curse. For some, the LVAD becomes less of an external machine and, at some point becomes part of the person. DISCUSSION: While clinicians do extensive teaching about life with an LVAD-DT, caregivers still express a sense of unpreparedness and highlight multiple domains of concern, including relationship issues with the patient, and with the device, isolation, and home and family management. This initial qualitative analysis reflects a need for greater emphasis on quality of life for LVAD-DT caregivers.