‘A new normal’? Ventricular Assist Device implantation and subsequent heart transplant in children and adolescents: A family experience

Abstract

Ventricular Assist Devices (VAD) are enabling children experiencing severe heart failure, who would have otherwise died, to be bridged to transplant or recovery. Donated Paediatric hearts are in short supply, so the use of VAD is likely to continue to support paediatric patients for the foreseeable future. This study explored the experiences of children and young people (CYP) being supported by VAD and their families. Semi-structured interviews were undertaken with 24 families after transplant (either parents only, parents and CYP together, or CYP only), and two participant observations with families currently living with a child on VAD. This study was conducted at one of two UK Paediatric Heart Transplantation Centres. The data suggest that families adjust to a ‘new normal’ that the heart failure and subsequent medical intervention brings. This involves adjusting to the initial diagnosis and need for VAD implantation; establishing a new life on VAD; the emotional roller coaster that comes with this highly invasive treatment option; and, adapting to a new way of life following transplant. This research adds to the limited available research on the experience of families with a CYP being supported by VAD. The family viewpoint raises important issues about highly invasive treatment, the lived realities of VAD implantation and subsequent transplant, and the forever changed lives post discharge. These perspectives are of great importance when considering the growth of both VAD implantation and paediatric heart transplantations as established therapeutic treatment options.