Communication ETDs

Publication Date

Summer 7-14-2022

Abstract

Epilepsy is currently the fourth most common neurological disorder in the world (Epilepsy Foundation, 2022). However, it is largely misunderstood by both the public and those with epilepsy. In addition, epilepsy is still a stigmatized condition in most areas of the world.

In part due to the stigma, as well as the impact on quality of life factors, disclosure of an epilepsy diagnosis can be a struggle for those with epilepsy as well as their parents or caregivers. Therefore, this study explored disclosure challenges faced by parents of children with epilepsy, utilizing Communication Privacy Management theory and Stigma Management Communication theory to guide the research.

After interviewing 15 mothers of children with epilepsy, all of whom resided in the United States, seven primary themes emerged in relation to epilepsy disclosure and experiences. These seven themes were: a) everyone needs to know; b) “sometimes you just want to be another parent and another kid at the party”; c) positive social support; d) negative social support; e) providing support to others; f) quality of life; and g) stigma.

Given the prevalence of epilepsy, and the public misunderstanding of the condition, these findings could be used to continue helping educate the public about the condition. In addition, the findings could be helpful to parents of children newly diagnosed with epilepsy as they make decisions about disclosing the condition to others. The findings also add to the literature in CPM regarding disclosure and healthcare advocates. The disclosure practices described here also add to the literature on ways individuals determine stigma management strategies used.

Language

English

Keywords

epilepsy, disclosure, Communication Privacy Management, Social Support

Document Type

Dissertation

Degree Name

Communication

Level of Degree

Doctoral

Department Name

Department of Communication and Journalism

First Committee Member (Chair)

Judith McIntosh White

Second Committee Member

David Weiss

Third Committee Member

Jaelyn deMaria

Fourth Committee Member

Paige Toller

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