Disorder and Disconnection: Parent experience of liminality when caring for their dying child.

Parents caring for a child with a life threatening or life limiting illness experience a protracted and largely unknown journey, as they and their child oscillate somewhere between life and death. Using an interpretive qualitative approach, interviews were conducted with parents (n=25) of children who had died. Findings reveal parents’ experiences to be characterized by personal disorder and transformation as well as social marginalization and disconnection. As such they confirm the validity of understanding these experiences as, fundamentally, one of liminality, in terms of both individual and collective response. In dissecting two inter-related dimensions of liminality, an underlying tension between how transition is subjectively experienced and how it is socially regulated is exposed. In particular, a structural failure to recognize the chronic nature of felt liminality can impede parents' effective transition.