Disorder and disconnection: parent experiences of liminality when caring for a dying child

Joanne Jordan, Jane Price, Lindsay Prior

Research output: Contribution to journalArticle

11 Citations (Scopus)

Abstract

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 characterised by personal disorder and transformation as well as social marginalisation 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 recognise the chronic nature of felt liminality can impede parents’ effective transition.
Original languageEnglish
Pages (from-to)839-855
Number of pages15
JournalSociology of Health and Illness
Volume37
Issue number6
Early online date27 Jul 2015
DOIs
Publication statusPublished - Jul 2015

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