title: Disorder and disconnection: parent experiences of liminality when caring for their dying child.
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.
authors.affiliation: Institute of Nursing and Health Research, Ulster University, Northern Ireland.
authors.forename: Joanne
authors.initials: J
authors.lastname: Jordan
authors.affiliation: Faculty of Health, Social Care and Education, Kingston University and St George's University, London.
authors.forename: Jayne
authors.initials: J
authors.lastname: Price
authors.affiliation: Centre of Excellence in Public Health, Queen's University, Belfast.
authors.forename: Lindsay
authors.initials: L
authors.lastname: Prior
mesh_terms: D000293:Adolescent; D001293:Attitude to Death; D002648:Child; D002675:Child, Preschool; D004644:Emotions; D005260:Female; D006801:Humans; D007223:Infant; D007407:Interviews as Topic; D008297:Male; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D011582:Psychological Theory
keywords: children; life threatening / life limiting illness; liminality; parents; transition