title: Exploring loss and replacement of loss for understanding the impacts of epilepsy onset: a qualitative investigation.
abstract: Previous research identifies loss as a key concept for our understanding of the impact of chronic illness. In this in-depth qualitative study, we explored the utility of the concept of loss and loss replacement as a means of gaining a fuller understanding of the implications of a diagnosis of epilepsy for overall quality of life (QOL). Potential participants were identified from the database of a large UK-based randomized controlled trial of antiepileptic drug treatment for new-onset epilepsy and selected using purposive sampling methods. In-depth interviews were conducted with 67 people; interview material was analyzed thematically. Our findings confirm 'loss' as a key concept in understanding epilepsy impact. Participants cited profound physical and social losses, and the links between these and psychological loss were clearly articulated. Informants described two main processes via which the linked losses they experienced occurred: personal withdrawal processes and externally enforced processes. Seizure control was integral to restoring psychological well-being and a sense of normality but was only one of a number of influences moderating the degree of loss experienced following seizure onset. Our work emphasizes that people with epilepsy (PWE) require active support for their continued engagement or reengagement in roles and activities identified as central to their psychological well-being and overall QOL. Achieving this requires a multiagency approach to drive forward key strategies for reduction of the negative impacts of epilepsy and to engender a sense of normality in the context of a condition often experienced as placing the individual outside the socially determined parameters of the 'normal'.
authors.affiliation: Department of Public Health & Policy, University of Liverpool, Liverpool, UK. Electronic address: ajacoby@Liv.ac.uk.
authors.forename: Ann
authors.initials: A
authors.lastname: Jacoby
authors.affiliation: Department of Public Health & Policy, University of Liverpool, Liverpool, UK.
authors.forename: Adele
authors.initials: A
authors.lastname: Ring
authors.affiliation: Department of Public Health & Policy, University of Liverpool, Liverpool, UK.
authors.forename: Margaret
authors.initials: M
authors.lastname: Whitehead
authors.affiliation: Department of Molecular & Clinical Pharmacology, University of Liverpool, Liverpool, UK.
authors.forename: Anthony
authors.initials: A
authors.lastname: Marson
authors.affiliation: Department of Molecular & Clinical Pharmacology, University of Liverpool, Liverpool, UK.
authors.forename: Gus A
authors.initials: GA
authors.lastname: Baker
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000927:Anticonvulsants / Q000627:therapeutic use; D002908:Chronic Disease; D004827:Epilepsy / Q000175:diagnosis / Q000188:drug therapy / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology*; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires; D055815:Young Adult
chemical_list: D000927:Anticonvulsants
keywords: Epilepsy; Longitudinal; Psychosocial loss; Qualitative; Quality of life; Social production function theory