The Experience of Parents and Children Where Children Have Been Supported with a Ventricular Assist Device as a Bridge to Heart Transplantation

Abstract

There is little information to assist in understanding the experience endured by parents and children where children have been supported with a ventricular assist device (VAD) as a bridge to heart transplantation. Consequently, the aims of this study were to gain an understanding of children’s and parents’ experience where children have been supported with a VAD as a bridge to heart transplantation and to use this information to improve the Royal Children’s Hospital (RCH) VAD program. This study employed a qualitative approach using purposive sampling. Semistructured interviews were conducted with children aged 13 years or more and their parents to determine their experience of having required VAD support as a bridge to transplantation. Results demonstrated a lack of information that prepared families and children for the anticipated course of treatment on VAD support. Recommendations to improve the VAD program for parents and children include more information through meetings, as well as in a written format, and speaking to other families who had already experienced VAD. For children in particular, a visual of the VAD, its associated equipment, and an image of where it is placed in the body is vital information that is necessary prior to VAD support. Overall, the recommendations are important and should be made available to improve the experience for children and parents, not only of the RCH VAD program but for all hospitals offering VAD therapy.