The lived experience of patients with left ventricular assist devices: a systematic review of qualitative studies

Abstract Background although the utilization of left ventricular assist devices (LVADs) in heart failure (HF) patients has been increasing, little is known about the patients’ experience of living and managing daily life post LVAD implantation. Knowing more about the patients’ experience would help LVAD nurses establish a less hierarchical and more meaningful therapeutic relationship with their patients, and anticipate the patients’ physical, emotional and social needs post LVAD implantation. Purpose to identify the themes and patterns amongst individuals with HF who have opted for LVAD implantation, as very few studies have looked at the needs of this patient group. Methods a systematic search of PubMed, Scopus, ScienceDirect and Google Scholar in November 2022 yielded 530 research papers from 2011-2022 with keywords: LVAD, left-assist, patient, qualitative. All studies were imported into Covidence, 24 duplicates were removed, and 506 papers were subjected to abstract, title and full-text screening by three researchers independently. Screening resulted in the inclusion of 15 qualitative studies on the experiences of adult patients with implanted LVAD. All studies that were included had conducted qualitative interviews. Each study was scored according to CASP criteria, and no distinction was made between Bridge-To-Transplantation Therapy and Destination Therapy. Results Fifteen n=15 studies in 7 countries involving 296 individuals (232 patients and 64 informal caregivers) were reviewed. The review of the literature revealed a variety of findings. Data analysis identified seven themes pertaining to the experience of living with LVAD: a) physical and functional dimensions of life n=7 studies, b) emotional – psychological dimensions n=10 studies, c) hope and optimism n=5 studies d) social aspects and relations to others n=6 studies, e) adaptation and coping mechanisms n=6 studies, f) receiving support from others as part of holistic care n=3 studies, and g) liminality and ambivalence n=3 studies. Conclusions LVAD patients experience a life with functional limitations, fear, lifestyle changes, frustration, with "up and down-ness", that requires them to resort to a repertoire of adaptation and coping mechanisms, hope, and support from family and services. LVAD implantation introduces them to a new embodied experience of living with stigma, but also to a feeling that they have been "saved". Somewhere along their "LVAD trajectory", they experience loss of identity and "liminality", and they go through what is also known as "biographical disruption". Professionals in LVAD and Heart Failure services would be better suited to support patients and their caregivers through this journey of life transformation and ambivalence, if they were more aware of the aforementioned findings. This review sheds light on the experience of a very unique group of patients, who need specialist and needs-specific care in this post-modernism biotechnical era.PRISMA Flow DiagramTable of the included studies