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Enhancing patient engagement in Parkinson's disease mental health research

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TitleInfo
Title
Enhancing patient engagement in Parkinson's disease mental health research
Name (type = personal)
NamePart (type = family)
Dennin
NamePart (type = given)
Michael Davis
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Michael Davis Dennin
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author
Name (type = personal)
NamePart (type = family)
Dobkin
NamePart (type = given)
Roseanne D.
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Roseanne D. Dobkin
Affiliation
Advisory Committee
Role
RoleTerm (authority = RULIB)
chair
Name (type = corporate)
NamePart
Rutgers University
Role
RoleTerm (authority = RULIB)
degree grantor
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Graduate School of Applied and Professional Psychology
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school
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theses
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DateCreated (encoding = w3cdtf); (qualifier = exact)
2019
DateOther (encoding = w3cdtf); (qualifier = exact); (type = degree)
2019-08
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2019
Language
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English
Abstract
Neuropsychiatric complications of PD (e.g., depression) are primary contributors to reduced quality of life amongst people with PD (PWP). Thus, ongoing mental health research to develop effective treatments for psychiatric conditions associated with PD is crucial toward improving the lives of PWP. Common problems faced in mental health clinical trials include reluctance to take part in research, early dropout, and inaccurate and/or under-reporting of emotional concerns. These factors may impede the progress of clinical research, slowing development of effective mental health treatments for PWP. Developing a better understanding of these barriers represents important steps towards optimizing care for PWP. The objectives of this qualitative study were to 1) identify barriers and facilitators to participation in Parkinson’s Disease (PD) mental health research, 2) describe factors that influence study dropout, and 3) develop tools to enhance accuracy of self-report and participant retention in PD mental health clinical trials. The overall purpose of this research was to improve the quality of PD mental health research by gaining insight from direct engagement with PD advocates, including PWP and their carepartners. Three focus groups (N=16 total, 4-6 participants per group) were completed between December 2017 and March 2018 (Phase 1), transcribed, and analyzed via qualitative thematic analysis. Specific deliverables were developed in response to key themes, and two additional focus groups (Phase 2) were completed in June and July 2018 to gather further input and to revise research tools, methods, and procedures. Limited knowledge about the common and central role that neuropsychiatric symptoms play in overall PD management was identified as a key barrier to engagement. Perceived stigma was reported to be a major driver of self-report bias. Peer-to-peer research ambassador programs, improved educational materials regarding PD mental health, quarterly wellness newsletters, and mixed-media testimonials from prior study participants were examples of tools that may enhance the longevity and quality of PWP participation in mental health research, based on focus group results. Deliverables from this project may support the collection of high-quality clinical trial data, ultimately improving available mental health care resources for PWP.
Subject (authority = ETD-LCSH)
Topic
Parkinson's disease
Subject (authority = RUETD)
Topic
Clinical Psychology
Subject (authority = ETD-LCSH)
Topic
Patients -- Mental health
Subject (authority = ETD-LCSH)
Topic
Depressed persons
RelatedItem (type = host)
TitleInfo
Title
Rutgers University Electronic Theses and Dissertations
Identifier (type = RULIB)
ETD
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ETD_10167
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application/pdf
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text/xml
Extent
1 online resource (viii, 80 pages) : illustrations
Note (type = degree)
Psy.D.
Note (type = bibliography)
Includes bibliographical references
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Graduate School of Applied and Professional Psychology Electronic Theses and Dissertations
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rucore10001800001
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NjNbRU
Identifier (type = doi)
doi:10.7282/t3-bbkz-vh20
Genre (authority = ExL-Esploro)
ETD doctoral
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Rights

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The author owns the copyright to this work.
RightsHolder (type = personal)
Name
FamilyName
Dennin
GivenName
Michael
MiddleName
Davis
Role
Copyright Holder
RightsEvent
Type
Permission or license
DateTime (encoding = w3cdtf); (qualifier = exact); (point = start)
2019-08-13 15:45:20
AssociatedEntity
Name
Michael Davis Dennin
Role
Copyright holder
Affiliation
Rutgers University. Graduate School of Applied and Professional Psychology
AssociatedObject
Type
License
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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

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windows xp
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2019-08-13T19:35:52
DateCreated (point = end); (encoding = w3cdtf); (qualifier = exact)
2019-08-13T19:35:52
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