Examining perspectives of adults with epilepsy and their primary support persons on living with epilepsy and support for self-management: A mixed-methods approach Open Access

Walker, Elizabeth L.R. (2013)

Permanent URL: https://etd.library.emory.edu/concern/etds/41687j259?locale=en
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Abstract

Epilepsy, a common neurological disorder characterized by recurrent seizures, has a profound effect on the lives of individuals with the condition and their families and friends. However, little is known about a person with epilepsy's (PWE) support person and the support provided. For this dissertation, a mixed-methods study was undertaken to examine the interpersonal relationship between PWE and their primary support persons (PSP), the support provided to PWE, and how support is associated with self-management and quality of life. The quantitative phase of this study included surveys with 101 individuals (53 adults with epilepsy and 48 PSP) and the qualitative phase involved in-depth interviews with 22 PWE and 16 PSP. The results of these studies are reported in two qualitative papers and one mixed-methods paper.

The aim of the first paper was to gain insight into how epilepsy affects the lives of PWE and PSP, as well as the types and influences of support provided to PWE. Illness intrusiveness, the disruptions to valued activities and interests, was significant for both PWE and PSP and negatively affected quality of life. Experiences were shaped by seizure control, the interpersonal relationship, and perceptions about support. In the second paper, the types of self-management support provided to PWE and its effect on self-management was qualitatively examined. PSP's involvement spanned a continuum from PWE-led management, to joint management, to PSP-led management. Where the pairs fell on the continuum depended on develop, and relationship type and dynamics. The purpose of the third paper was to use mixed methods to evaluate which types of self-management support were easier or more difficult to receive and provide. The results suggest that support for seizures and PSP driving PWE to the doctor were types of support that were easier to receive and provide, whereas reminders were more difficult.

This dissertation provides a deeper understanding of the how support for PWE influences self-management of epilepsy and quality of life, and how PWE and PSP's experiences intertwine. The findings can inform efforts to bolster epilepsy self-management and lessen the impact of epilepsy on the lives of both PWE and PSP.

Table of Contents

Table of Contents

Chapter 1: Introductory Literature Review................................................................... 1

Introduction................................................................................................................ 1

Epilepsy...................................................................................................................... 4

Living with Epilepsy................................................................................................... 6

Self-management of Epilepsy................................................................................... 13

Social Support........................................................................................................... 17

Providing Support..................................................................................................... 23

Conceptual Framework: Support, Depression, and Self-Management....................... 27

Rationale for the Research........................................................................................ 34

References................................................................................................................ 37

Chapter 2: "What affects her affects you": Perspectives of living with epilepsy from adults with epilepsy and their support persons....................................................................................................... 61

Abstract.................................................................................................................... 61

Introduction.............................................................................................................. 63

Methods.................................................................................................................... 66

Results...................................................................................................................... 70

Discussion................................................................................................................ 93

References.............................................................................................................. 103

Chapter 3: The continuum of support for self-management: Qualitative analysis of perspectives of adults with epilepsy and their support persons............................................................................... 111

Abstract.................................................................................................................. 111

Introduction............................................................................................................ 112

Methods.................................................................................................................. 116

Results.................................................................................................................... 120

Discussion.............................................................................................................. 135

References.............................................................................................................. 147

Chapter 4: A mixed-methods analysis of support for self-management behaviors: Perspectives of people with epilepsy and their support providers........................................................................... 155

Abstract.................................................................................................................. 155

Introduction............................................................................................................ 157

Methods.................................................................................................................. 159

Results.................................................................................................................... 164

Discussion.............................................................................................................. 172

References.............................................................................................................. 183

Chapter 5: Summary and Conclusion......................................................................... 188

Evaluation of the Dissertation Research.................................................................. 193

Implications for Research and Practice................................................................... 195

Conclusion.............................................................................................................. 199

References.............................................................................................................. 200

Table of Tables

Table 1.1 Types of social support...................................................................................... 29

Table 2.1 Demographic background of people with epilepsy and their primary support persons 99

Table 2.2 Trajectories of people with epilepsy................................................................. 100

Table 2.3 Trajectories of primary support persons........................................................... 101

Table 3.1 Demographic characteristics of interview participants (n=38)........................... 143

Table 3.2 Self-management behaviors and supports......................................................... 145

Table 4.1 Demographic characteristics of people with epilepsy and their primary support persons 177

Table 4.2 FACETS summary statistics from the Rasch analysis of the Epilepsy Regimen-Specific Support Scale 179

Table 4.3 Mixed-methods data to explain misfit in person functioning............................ 180

Table of Figures

Figure 1.1: Conceptual framework showing the relationship between support, depressive symptoms, and self-management................................................................................................................ 27

Figure 2.1 Dyadic model of living with epilepsy.............................................................. 102

Figure 3.1 Self-management continuum........................................................................... 146

Figure 4.1 Self-management support variable map........................................................... 182

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