A Qualitative Analysis of Attitudes, Knowledge, and Interest in Research of People with Parkinson’s Disease and their Care Partners in an Accessible Research Education Program Open Access

Ramos, Maria (Spring 2021)

Permanent URL: https://etd.library.emory.edu/concern/etds/1c18dh030?locale=en
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Abstract

Background and Objectives: People with Parkinson’s disease (PWP) and care partners (CP) have unique perspectives regarding research and the research process. TeleDREAMS was an eight-week research advocacy training program designed to increase understanding of, and participation in, clinical research by older adults, including those from underrepresented groups.

Methods: A qualitative evaluation was conducted to explore the themes resulting from weekly phone call conversations with participants, both PWP (n=32) and CP (n=17), in an eight-week telehealth educational intervention. All participants were assessed for clinical characteristics and demographics (Mean age PWP = 68.06 ± 8.3, Mean age CP = 66.68 ± 6.4). Qualitative data were derived from 365 thirty-minute semi-structured interviews. The calls were conducted by telephone between participants and study staff to gauge progress, motivation, and information retention after each module of the educational program. These interviews were thematically analyzed using inductive and deductive methods.

Results: Thematic analysis revealed eight salient themes. Participants expressed varying beliefs and attitudes towards clinical research, the research process, and participation in research, encompassed in the themes, “Understanding the Importance of Advocacy,” “Becoming Cognizant of Past Advocacy Experiences,” and “Research Participation.” There were also unexpected themes, including “Knowledge Acquisition Sometimes Diverged from Module Intention,” “Learning from Example,” “Community Engagement,” and “New Awareness of Ethnic Disparity.”

Conclusion: This study provides insight for increasing research participation of hard-to-reach and underrepresented participants. Phone call interviews are an accessible, adaptable method that is effective in gathering the needs, opinions, and attitudes of older adults. Further studies are needed to identify additional barriers to PWP and CP participation in research. This qualitative model and its results can be used for improving future iterations of TeleDREAMS and similar telehealth educational programs.

Table of Contents

Table of Contents

INTRODUCTION.....1

PURPOSE.....2

HYPOTHESES.....2

METHODS.....3

Participant Recruitment.....3

Overview of the TeleDREAMS Program.....5

Data Collection.....5

Data Analysis.....6

RESULTS.....6

Participant Characteristics.....6

Qualitative Findings.....7

Theme 1: Understanding the Importance of Advocacy.....8

Theme 2: Becoming Cognizant of Past Advocacy Experiences.....11

Theme 3: Community Engagement.....12

Theme 4: New Awareness of Ethnic Disparity.....13

Theme 5: Learning from Example.....14

Theme 6: Knowledge Acquisition Sometimes Diverged from the Module Intention.....15

Weeks 1-3:.....15

Week 4: Understanding and Interpreting Clinical Trials for Patient Advocates.....16

Week 5: Aging and Clinical Research.....16

Week 6: Informed Consent and Health Literacy.....17

Week 7: Advocacy in Clinical Research.....18

Week 8: Recognizing Diverse Communities and Becoming an Advocate.....19

Theme 7: Recognizing Patient Autonomy.....19

Theme 8: Research Participation.....20

DISCUSSION.....21

General Findings.....21

Telehealth Educational Programs.....22

Findings Related to Advocacy, Autonomy, Community Engagement, and Research Participation.....23

Findings Related to the Education of Older Adults.....24

TeleDREAMS Successes.....25

Areas of Improvement.....26

LIMITATIONS.....27

CONCLUSION.....28

APPENDIX A.....30

APPENDIX B.....31

REFERENCES.....32

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