The Lived Experience of Spouses of Patients With a Left Ventricular Assist Device Before Heart Transplantation

Abstract

• Background No publications describe the life experience of spouses who are designated caregivers of patients with a left ventricular assist device before transplantation.• Objective To explore what life is like for spouses serving as caregivers of patients with a left ventricular assist device before transplantation and to assess the meaning of such experience to them.• Methods This phenomenological study included 3 women 38 to 52 years old who were designated caregivers of patients with a left ventricular assist device while the patients were waiting at home for a heart transplant.• Results Three major themes emerged—emotional distress, determination, and optimism: a new lease on life. The identified themes were elucidated by 8 subthemes: guilt and realization of severity of illness, fear and anxiety, recognition that being a caregiver is an overwhelming experience and a burden, coping, living with hope, realization of loving relationship, adaptation to a new life, and joyful feeling.• Conclusion The spouses who served as caregivers had strong emotions as they entered each stage of this life experience. The stages were characterized by the identified themes and subthemes, which otherwise might not have been revealed or might have remained private to the study participants. Critical care nurses should recognize and anticipate challenges for these stages of life experienced by the spouses as caregivers. Heightened awareness of this phenomenon will guide nurses in individualizing plans of care, educating patients and patients’ families, and evaluating outcomes of care.