Description
TitleEnhancing patient engagement in Parkinson's disease mental health research
Date Created2019
Other Date2019-08 (degree)
Extent1 online resource (viii, 80 pages) : illustrations
DescriptionNeuropsychiatric 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.
NotePsy.D.
NoteIncludes bibliographical references
Genretheses, ETD doctoral
LanguageEnglish
CollectionGraduate School of Applied and Professional Psychology Electronic Theses and Dissertations
Organization NameRutgers, The State University of New Jersey
RightsThe author owns the copyright to this work.
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