The Perceptions of Important Elements of Caregiving for a Left Ventricular Assist Device Patient

Abstract

Background The use of a left ventricular assist device (LVAD) is becoming increasingly common in patients with end-stage heart failure. Many LVAD programs require patients to have a caregiver prior to receiving a device. There are few studies exploring the experience, burden, and impacts on caregivers of patients with LVADs. Objectives The aim of this study was to synthesize the qualitative literature regarding what caregiver’s perceptions about caring for an adult LVAD patient. Methods We searched Medline, CINAHL, PsychInfo and Web of Science to find English articles on the topic of LVAD caregiver’s perceptions. The articles were then synthesized using a formal process of qualitative meta-synthesis. Results Eight articles met criteria for inclusion. The meta-synthesis across the articles resulted in eight themes categorized under three domains. Many of the articles suggested a longitudinal process of caregiving with perceptions largely dependent upon the time of interview in relation to the LVAD. The first domain of caregiving is the “early” stage covering life before the LVAD through the procedure. This phase is characterized by the pre-LVAD “emotional rollercoaster,” the decision seen as “no option,” and the thought of “leave it [the LVAD] at the hospital.” The second domain is the “middle” stage covering the timeframe following discharge from the hospital. This phase is characterized by fragility of the patient, recognition of a need to adapt, and a transformed life. The final domain is “late LVAD” and describes how late in the LVAD process, the LVAD indication (bridge to transplant or destination therapy) brings in to focus what is important to caregivers. Conclusions Existing literature indicates that the LVAD caregiver experience is intense, burdensome, and the need to adapt to a new life. Given the burdens caregivers experience, clinicians and future research should explore strategies to support these important individuals.

Adaptation and coping in patients living with an LVAD: A metasynthesis

“…11 While functional status and patient reported outcomes, including quality of life, have been reviewed in the literature, no single study has provided a holistic account regarding the ways in which patients experience and adapt to living with an LVAD. The purpose of this review is to synthesize and convey information to inform components of LVAD education programs that support the coping and adaptation of patients living with an LVAD and identify opportunities for future interventions.…”

Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review

“…Several reviews have evaluated particular aspects of HF family caregiving, including general experiences [12], relationship quality [13], needs [14], burden [15, 16], roles in patient self-care [17–19] and left ventricular assist device management [20]. However, to our knowledge, the evidence-base of original research focused on HF family caregiving has yet to be assessed in its entirety in order to inform future research directions and priorities in HF palliative care.…”

Caregivers of Patients With Left Ventricular Assist Devices

“…Therefore, we derived a list of core caregiver support domains from a growing conceptual peer-reviewed literature on the importance of caregiver involvement in LVAD and other health outcomes. [2][3][4][5][6][7][8][9] To create these domains, we incorporated pre-existing domains that were part of social work assessments (using Stanford Integrated Psychosocial Assessment for Transplantation variables as a starting point for our conceptual framework) and then added additional elements of caregiver support proposed anecdotally in other studies as potential factors impacting patient mortality after LVAD placement.…”