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.