Beyond Tuskegee: Qualitative Insights form Older African Americans on Clinical Trial Participation Open Access

Abstract

This study aimed to explore potential facilitators and barriers to clinical trial screening and enrollment participation among older African Americans. Despite efforts to increase enrollment in clinical trials in recent decades for a number of chronic and infectious diseases, clinical trial participation among elderly African Americans remains suboptimal. Therefore an intervention study was conducted entitled "Delivering a Dose of Hope" that sought to reach and influence clinical trial participatory outcomes in Atlanta area Black churches. This intervention also sought to uncover the influencing factors affecting study participation. This qualitative substudy was a component to the "Dose of Hope" program. Baseline (n=18) and Semi-structured in-depth interviews (n=12) were conducted with older African Americans who participated in an education intervention at their church in the metro Atlanta area. Interviews were transcribed verbatim, and coded for common thematic factors related to facilitators and barriers to clinical trial screening and participation. The analyses adopted a modified grounded theory qualitative approach for thematic elicitation. Three major themes were subsequently identified at baseline: Need for Education, Attitudes toward Clinical Trials, and Trust. Six major themes were also identified at follow-up: Lack of Awareness, Motivation to Participate in Clinical Trials, Psychosocial Barriers, Logistical Challenges, and Education Intervention. Lack of awareness was found to precede barriers and facilitators in the decision making process. Lack of awareness, although related to the need for education, emerged as a separate theme. This study successfully elicited a theoretical model that postulates relationships between thematic components how they influence willingness to screen and participate in clinical trials.

Table of Contents

Introduction.....3

Study Purpose.....10

Research Question.....10

Literature Review.....11

Methods.....18

Participants.....18

Study design.....19

Study procedures.....20

Interview format.....21

Analysis.....23

Results.....25

Baseline interviews.....25

Table 1. Baseline Themes (n=18).....26

In-Depth Interview Main Themes.....27

Table 2. In-Depth Interview Themes (n=13).....28

Discussion.....41

Findings.....41

Figure 1. Precaution Adoption Process Model.....42

Conclusions.....44

Strengths.....44

Limitations.....45

References.....47

Figures.....52

Baseline Interview Guide.....52

In Depth Interview Guides.....53

Figure 1. Precaution Adoption Model.....54

Tables.....55

Table 1. Baseline Themes.....55

Table 2. In-Depth Interview Themes.....56

About this Master's Thesis

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School	Rollins School of Public Health
Department	Behavioral Sciences and Health Education
Degree	MPH
Submission	Master's Thesis
Language	English
Research Field	Health Sciences, Public Health
Keyword	African American Clinical trial barriers Health disparities Clinical trial facilitators
Committee Chair / Thesis Advisor	Frew, Paula, Emory University
Committee Members	Kalokhe, Ameeta, Emory University
Partnering Agencies	Emory University schools, faculty or affiliated programs US (Federal) agency other than CDC

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