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      Qualitative Analysis of Attitudes, Knowledge, and Interest in Research of People with Parkinson's Disease and Their Care Partners Receiving Accessible Research Education

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          Abstract

          Background

          People with Parkinson's disease (PWP) and their care partners (CP) are underrepresented in research.

          Methods

          As an eight-week research advocacy training program, TeleDREAMS was designed to increase understanding of, and participation in, clinical research by older adults through topics on the research process. Qualitative analysis was conducted to explore themes from 365 thirty-minute semistructured phone interviews with 32 PWP and 17 CP TeleDREAMS participants. Interviews gauged progress, motivation, and information retention after each weekly module.

          Results

          Eight salient themes were identified from the interviews, including Understanding the Importance of Advocacy and Becoming Cognizant of Past Advocacy Experiences.

          Conclusions

          While some findings aligned with weekly module topics, others, such as stated learning preferences and knowledge acquisition of older adults in an educational program, were unexpected. TeleDREAMS may increase interest in community engagement, research participation, and advocacy roles in marginalized and underrepresented participants.

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          Most cited references28

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          Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study.

          Mojtaba Vaismoradi, Hannele Turunen, Terese Bondas (2013)
          Qualitative content analysis and thematic analysis are two commonly used approaches in data analysis of nursing research, but boundaries between the two have not been clearly specified. In other words, they are being used interchangeably and it seems difficult for the researcher to choose between them. In this respect, this paper describes and discusses the boundaries between qualitative content analysis and thematic analysis and presents implications to improve the consistency between the purpose of related studies and the method of data analyses. This is a discussion paper, comprising an analytical overview and discussion of the definitions, aims, philosophical background, data gathering, and analysis of content analysis and thematic analysis, and addressing their methodological subtleties. It is concluded that in spite of many similarities between the approaches, including cutting across data and searching for patterns and themes, their main difference lies in the opportunity for quantification of data. It means that measuring the frequency of different categories and themes is possible in content analysis with caution as a proxy for significance. © 2013 Wiley Publishing Asia Pty Ltd.
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            The clinical symptoms of Parkinson's disease.

            Sigurlaug Sveinbjornsdottir (2016)
            In this review, the clinical features of Parkinson's disease, both motor and non-motor, are described in the context of the progression of the disease. Also briefly discussed are the major treatment strategies and their complications. Parkinson's disease is a slowly progressing neurodegenerative disorder, causing impaired motor function with slow movements, tremor and gait and balance disturbances. A variety of non-motor symptoms are common in Parkinson's disease. They include disturbed autonomic function with orthostatic hypotension, constipation and urinary disturbances, a variety of sleep disorders and a spectrum of neuropsychiatric symptoms. This article describes the different clinical symptoms that may occur and the clinical course of the disease. This article is part of a special issue on Parkinson disease.
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              Incidence of Parkinson's disease: variation by age, gender, and race/ethnicity.

              S Van den Eeden (2003)
              The goal of this study was to estimate the incidence of Parkinson's disease by age, gender, and ethnicity. Newly diagnosed Parkinson's disease cases in 1994-1995 were identified among members of the Kaiser Permanente Medical Care Program of Northern California, a large health maintenance organization. Each case met modified standardized criteria/Hughes diagnostic criteria as applied by a movement disorder specialist. Incidence rates per 100,000 person-years were calculated using the Kaiser Permanente membership information as the denominator and adjusted for age and/or gender using the direct method of standardization. A total of 588 newly diagnosed (incident) cases of Parkinson's disease were identified, which gave an overall annualized age- and gender-adjusted incidence rate of 13.4 per 100,000 (95% confidence interval (CI): 11.4, 15.5). The incidence rapidly increased over the age of 60 years, with only 4% of the cases being under the age of 50 years. The rate for men (19.0 per 100,000, 95% CI: 16.1, 21.8) was 91% higher than that for women (9.9 per 100,000, 95% CI: 7.6, 12.2). The age- and gender-adjusted rate per 100,000 was highest among Hispanics (16.6, 95% CI: 12.0, 21.3), followed by non-Hispanic Whites (13.6, 95% CI: 11.5, 15.7), Asians (11.3, 95% CI: 7.2, 15.3), and Blacks (10.2, 95% CI: 6.4, 14.0). These data suggest that the incidence of Parkinson's disease varies by race/ethnicity.
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                Author and article information

                Contributors
                Madeleine E. Hackney:
                ORCID: https://orcid.org/0000-0003-1833-0051
                Journal
                Journal ID (nlm-ta): Parkinsons Dis
                Journal ID (iso-abbrev): Parkinsons Dis
                Journal ID (publisher-id): pd
                Title: Parkinson's Disease
                Publisher: Hindawi
                ISSN (Print): 2090-8083
                ISSN (Electronic): 2042-0080
                Publication date Collection: 2023
                Publication date (Electronic): 11 September 2023
                Volume: 2023
                Electronic Location Identifier: 5519646
                Affiliations
                1Emory University College of Arts and Sciences, Atlanta, Georgia
                2Emory University School of Medicine, Department of Medicine, Division of Geriatrics and Gerontology, Atlanta, Georgia
                3Atlanta VA Center for Visual and Neurocognitive Rehabilitation, Atlanta, Georgia
                4Emory University School of Medicine, Department of Rehabilitation Medicine, Atlanta, Georgia
                5Emory University School of Nursing, Atlanta, Georgia
                6Birmingham/Atlanta VA Geriatric Research Education and Clinical Center, Atlanta, Georgia
                Author notes

                Academic Editor: Carlo Colosimo

                Author information
                https://orcid.org/0000-0002-8199-3205
                https://orcid.org/0000-0003-1833-0051
                Article
                DOI: 10.1155/2023/5519646
                PMC ID: 10506878
                PubMed ID: 37727499
                SO-VID: 60bf3d4a-438e-456d-8ae2-33ba2e652465
                Copyright © Copyright © 2023 Maria E. Ramos et al.
                License:

                This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                Date received : 15 December 2022
                Date revision received : 16 May 2023
                Date accepted : 10 August 2023
                Funding
                Funded by: Parkinson's Foundation
                Funded by: Emory Center for Health in Aging
                Funded by: Emory Roybal Center for Dementia Caregiving Mastery
                Categories
                Subject: Research Article

                ScienceOpen disciplines: Neurology
                Data availability:
                ScienceOpen disciplines: Neurology

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