The Rare Life: Examining Parents’ Grief, Barriers, and Facilitators Associated with Caring for Medically Complex Children

Abstract

ABSTRACT Caring for medically complex children (MCC) involves physical, financial, and emotional challenges for parents, who are often grieving the loss of their expectations or vision for a healthy child. We applied Miles’ parental grief model to explore the experiences of 25 parent-caregivers who were interviewed for The Rare Life, a podcast in which a mother of a MCC interviews parents about their experiences caring for their MCC. We characterize parent-caregivers’ experiences of shock; their intense grief, including yearning, helplessness, physical symptoms, behavioral changes, and a search for meaning; and the reorganization that helped them accept their parenting reality. In addition, we identified communicative barriers and facilitators that hindered and supported parent-caregivers’ movement through the phases of grief.