Exploring the Lived Experiences of Left Ventricular Assist Device Patients and their Caregivers

Abstract

Background: An advanced therapy for Heart Failure patients with left ventricular dysfunction consists of the Left ventricular assist device (LVAD). The LVAD procedure is complex and results in prominent lifestyle changes. In Lebanon, the lived experiences of patients living with an LVAD and their caregivers have not been explored. The purpose of the study was to explore the lived experiences of patients with an LVAD and their family caregivers. The study is the first inquiry to address the paucity of research on the Lebanese LVAD population and their direct caregivers. The study aimed to understand in depth how LVAD patients and their direct caregiver experience transition to a new life with the LVAD. Using a qualitative phenomenological design, unstructured interviews were conducted with a convenience sample of 5 patients and 5 caregivers recruited from a medical center in Lebanon. Colaizzi’s descriptive phenomenological method guided the analysis. Six themes emerged capturing the in-depth description of the participants’ lived experiences.

Results: Participants described the lived LVAD journey from being doomed to a new life (Theme I). They portrayed their life journey from living with HF to the LVAD. Though the LVAD decision was the only choice to sustain patients’ lives, they then perceived it as a life saver. Participants started to appreciate the LVAD given the positive health changes leading to a new life and the establishment of new routines. Theme II consisted of embodiment and attachment to the LVAD. Contrary to their first impressions, participants perceived the LVAD with positive descriptors. As a trust bond was established, they personified and embodied the LVAD. Being reliant on the LVAD to sustain living, participants felt attached and fully dependent on it. Participants shared their personal experiences on how they coped and adjusted with the lifestyle changes introduced with the LVAD. Theme III denoted how participants lived through: self-determination, coping and adjustment. They explained how they empowered themselves to reach self-determination. Coping through the stages of grief, participants progress with time until they reach acceptance. With acceptance, participants were able to integrate the LVAD into their lives. Adjustment was identified to be time dependent with the first two weeks being the hardest. Patients and their caregivers identified facilitators and challenges of the LVAD experience (Theme IV). Among the facilitators, faith, mental wellbeing, high spirits, caregiver, familial and social support eased adjustment with the new life after the LVAD implantation. Valid only to the single patient, lack of commitments and responsibilities allowed him to accept his destiny with the LVAD. Several challenges to the LVAD experience were identified, the economic crisis in Lebanon being one of them. Participants reported financial difficulties with employment restrictions. Another challenge consisted of the body image alterations acting as a barrier for participants’ intimacy. Spousal caregiver role was problematic. With the first impression on the LVAD, participants had to deal with their anticipated concerns. Complaints on the LVAD weight was perceived as a challenge. Last but not least, dyads had to deal with the electrical supply shortage. Despite the subsequent lifestyle changes, the LVAD brought hope and expectations (Theme V). Participants dwelled on the lifestyle changes introduced with the LVAD. Living with an LVAD was a shared experience between patients and their caregivers. The LVAD brought hope and expectations with their second chance in life. They still aspired to be free from the LVAD’s external components, the driveline and the batteries.

Finally, patients and their caregivers were provoked by others’ perception of the LVAD machine (Theme VI). Participants felt they were being singled out. Their privacy was disrupted by frequent stares and inquiries on the LVAD. Their physical appearance labeled them as either businessmen or terrorists. Patients feared people’s misperceptions of the LVAD as a valuable item and potential theft attempts. Given the public’s unfamiliarity with the LVAD, participants emphasized the need to raise awareness as this directly impacts their lived experiences.

Implications: This study is among the first research queries to address the Lebanese LVAD population and their direct caregivers. Participants had the chance to voice their personal experiences on how they lived through and adapted to a new life with the LVAD. These findings will inform healthcare providers on how to facilitate the coping of patients and their caregivers with the LVAD. The Clinical Nurse Specialist’s role is essential to coordinate and optimize the care aligning with their competencies. This study sets the grounds for future research addressing the coping and adjustment processes along with the quality of life of Lebanese patients and their caregivers.