Collaborative Research: Public Narratives and Personal Identities: A Multi-Method Examination of Stories of Illness

Suny At Stony Brook, Stony Brook NY

Investigators

Abstract

SES-0750635 Sara Shostak Brandeis University SES-0750686 Tammy Smith SUNY Stony Brook The research studies identity formation processes among people with epilepsy and their family members, by focusing on core and peripheral components within narratives of their life experiences. The investigators will analyze transcripts of interviews with people who have epilepsy or their immediate family members. The data are arrayed in two temporal cohorts, one set from 1975-1978 and the other from 2005-2006, which allows for comparison of how individuals' descriptions of living with epilepsy and their understandings of the root causes of that condition may have changed over thirty years time. This is a particularly relevant time period, as it encompasses a series of sustained efforts on the part of the Epilepsy Foundation to reduce the stigma associated with having epilepsy, the co-occurrence of advances in neurological and genetic research on epilepsy, and the rapid expansion of news media outlets communicating these messages and advances to the general public. These data will be analyzed from a both grounded theory perspective and using narrative network analysis. The research addresses the questions of how people living with epilepsy construct notions of the self, especially in relation to a condition which may cause significant biographical and social disruptions; and whether telling certain kinds of stories within identity narratives become more or less likely as scientific discourse from the public domain enters personal narratives. By investigating how people living with epilepsy and their family members tell stories, employ emergent concepts, and make important decisions about their lives, this project will more broadly illuminate processes of identity formation and assess they ways in which they may change. Additionally, the empirical findings of this study will contribute to efforts to assess the meanings of scientific information in people's lives and enhance understanding of the social and cultural dimensions of ethical decision making and moral reasoning.