WAITING FOR A LIVER TRANSPLANT: AN EXPLORATION OF THE LIVED EXPERIENCE OF PATIENTS AND CAREGIVERS IN ATLANTIC CANADA

Abstract

Liver transplantation is the only life-sustaining treatment available for patients with end stage liver disease, however the demand for these organs far exceeds availability. Many psychological, emotional and physical symptoms accompany the wait for a liver transplant. An interpretive phenomenological design was used to explore how patients and caregivers experience waiting for a liver transplant. Seven participants were recruited to take part in semi-structured interviews. Findings revealed that patients and caregivers have an overarching experience of the conundrum of hope. Four core themes were uncovered: Waiting for the Phone Call, Negotiating the Disruption: Redefining Self, Riding the Emotional Roller Coaster of Waiting and The Light at the End of the Tunnel. Findings of this study identify the need for additional psychological supports to be offered to patients and families, enhanced communication between patients and health care providers and the creation of support communities for both patients and caregivers.