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Parents' experience caring for children with drug resistant epilepsy
Descriptive
TitleInfo
Title
Parents' experience caring for children with drug resistant epilepsy
Name
(type = personal)
NamePart
(type = family)
Boreale
NamePart
(type = given)
Kathleen
NamePart
(type = date)
1968
DisplayForm
Boreale, Kathleen, 1968-
Role
RoleTerm
(authority = RULIB)
author
Name
(type = personal)
NamePart
(type = family)
Loveless
NamePart
(type = given)
Thomas J
DisplayForm
Thomas J Loveless
Affiliation
Advisory Committee
Role
RoleTerm
(authority = RULIB)
chair
Name
(type = corporate)
NamePart
Rutgers University
Role
RoleTerm
(authority = RULIB)
degree grantor
Name
(type = corporate)
NamePart
Graduate School - Newark
Role
RoleTerm
(authority = RULIB)
school
TypeOfResource
Text
Genre
(authority = marcgt)
theses
OriginInfo
DateCreated
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2020
DateOther
(qualifier = exact);
(type = degree)
2020-05
Language
LanguageTerm
(authority = ISO 639-3:2007);
(type = text)
English
Abstract
(type = abstract)
Rationale for study: Of the more than 65 million people estimated to have epilepsy worldwide, 10.5 million are children; one third of whom have drug resistant epilepsy (DRE). Although caring for a child with epilepsy impacts the lives of the child and family, parents who care for children with DRE have been found to experience more stress, as this severe form of epilepsy negatively affects the child's physical growth and mental development and is often associated with behavior disorders and disturbances. This study examined the lived experiences of parents with children with DRE to gain insight into how they described and gave meaning to their own quality of life relating to their lived experience.
Method: A purposeful sample of ten parents of children with DRE participated in the study, equally represented by men and women. The participants' ages ranged from 27 years to 56 years, with a mean age of 45 years. Using distinct interview guides to facilitate conversation, three interviews were conducted over the course of a four-month period. Time for reflection occurred between each interview, with field notes and journal reviews done by the researcher. The transcribed interviews were also reviewed at the beginning of each subsequent interview to ensure accuracy of the stories shared.
Results: The semi-structured interviews and narrative analyses portrayed parents' life stories pertaining to what it is like to care for a child with DRE. Narrative life patterns emerged and culminated in five shared areas: what is best for my child, functioning in silos, maintaining balance, living with uncertainty, and finding meaning and purpose.
Conclusions: A composite narrative told the story that represented the patterns of parents' experience caring for a child with DRE, which provided a deeper insight into their lived experience. Understanding their experience provided valuable information, such as, the type of support they need and how best to assist them as they care for their children.
Method: A purposeful sample of ten parents of children with DRE participated in the study, equally represented by men and women. The participants' ages ranged from 27 years to 56 years, with a mean age of 45 years. Using distinct interview guides to facilitate conversation, three interviews were conducted over the course of a four-month period. Time for reflection occurred between each interview, with field notes and journal reviews done by the researcher. The transcribed interviews were also reviewed at the beginning of each subsequent interview to ensure accuracy of the stories shared.
Results: The semi-structured interviews and narrative analyses portrayed parents' life stories pertaining to what it is like to care for a child with DRE. Narrative life patterns emerged and culminated in five shared areas: what is best for my child, functioning in silos, maintaining balance, living with uncertainty, and finding meaning and purpose.
Conclusions: A composite narrative told the story that represented the patterns of parents' experience caring for a child with DRE, which provided a deeper insight into their lived experience. Understanding their experience provided valuable information, such as, the type of support they need and how best to assist them as they care for their children.
Subject
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Topic
Nursing
RelatedItem
(type = host)
TitleInfo
Title
Rutgers University Electronic Theses and Dissertations
Identifier
(type = RULIB)
ETD
RelatedItem
(type = host)
TitleInfo
Title
Graduate School - Newark Electronic Theses and Dissertations
Identifier
(type = local)
rucore10002600001
Identifier
ETD_10633
Identifier
(type = doi)
doi:10.7282/t3-7bt5-t562
PhysicalDescription
Form
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InternetMediaType
application/pdf
InternetMediaType
text/xml
Extent
1 online resource (viii, 174 pages)
Note
(type = degree)
Ph.D.
Note
(type = bibliography)
Includes bibliographical references
Location
PhysicalLocation
(authority = marcorg);
(displayLabel = Rutgers, The State University of New Jersey)
NjNbRU
Genre
(authority = ExL-Esploro)
ETD doctoral
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Rights
RightsDeclaration
(ID = rulibRdec0006)
The author owns the copyright to this work.
RightsHolder
(type = personal)
Name
FamilyName
Boreale
GivenName
Kathleen
Role
Copyright Holder
RightsEvent
Type
Permission or license
DateTime
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(qualifier = exact);
(point = start)
2020-03-19 22:42:23
AssociatedEntity
Name
Kathleen Boreale
Role
Copyright holder
Affiliation
Rutgers University. Graduate School - Newark
AssociatedObject
Type
License
Name
Author Agreement License
Detail
I hereby grant to the Rutgers University Libraries and to my school the non-exclusive right to archive, reproduce and distribute my thesis or dissertation, in whole or in part, and/or my abstract, in whole or in part, in and from an electronic format, subject to the release date subsequently stipulated in this submittal form and approved by my school. I represent and stipulate that the thesis or dissertation and its abstract are my original work, that they do not infringe or violate any rights of others, and that I make these grants as the sole owner of the rights to my thesis or dissertation and its abstract. I represent that I have obtained written permissions, when necessary, from the owner(s) of each third party copyrighted matter to be included in my thesis or dissertation and will supply copies of such upon request by my school. I acknowledge that RU ETD and my school will not distribute my thesis or dissertation or its abstract if, in their reasonable judgment, they believe all such rights have not been secured. I acknowledge that I retain ownership rights to the copyright of my work. I also retain the right to use all or part of this thesis or dissertation in future works, such as articles or books.
Copyright
Status
Copyright protected
Availability
Status
Open
Reason
Permission or license
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Technical
RULTechMD
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ETD
OperatingSystem
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windows xp
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1.7
ApplicationName
Microsoft® Word 2016
DateCreated
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2020-04-17T08:53:17
DateCreated
(point = end);
(encoding = w3cdtf);
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2020-04-17T08:53:17
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