Parents' Experiences of Shared Decision-Making for Pediatric LVAD Implantation: A Qualitative Study

Abstract

Background: Pediatric left ventricular assist device (LVAD) implantation is a life-sustaining yet complex decision for children with end-stage heart failure. Parents must engage in shared decision-making (SDM) under conditions of uncertainty, time pressure, and emotional distress. However, evidence regarding how parents experience and navigate this process remains limited. Objectives: This study aimed to explore parents’ experiences of SDM during decision-making for pediatric LVAD implantation. Methods: A qualitative study using semi-structured interviews was conducted with the parents of children who underwent LVAD implantation at the Cardiopulmonary and Extracorporeal Life Support Department of a tertiary children's hospital in China. Participants were recruited using purposive sampling. Interviews were transcribed verbatim and analyzed using inductive qualitative content analysis. Results: Twelve parents participated. Four themes emerged: emotional shock after disrupted disease recognition; navigating unfamiliar technology through understanding and trust; multidimensional value deliberation with survival as the priority; and support gaps and ongoing needs during decision-making. Parents’ decisions were shaped not only by clinical information but also by emotional responses, relational trust, value priorities, and perceived support. Conclusions: SDM in pediatric LVAD implantation occurs within a complex context characterized by emotional distress, technological uncertainty, and relational dynamics. These findings underscore the critical role of nurses in providing emotional support, facilitating clear communication, and supporting parents throughout complex pediatric treatment decisions.