"From Victimhood to Warriors": Super-researchers' Insights Into Alzheimer's Disease Clinical Trial Participation Motivations

Abstract

Background and objectives: Recruitment and retention of research participant serve as a significant challenge in the search for ways to slow or prevent Alzheimer's disease. While barriers to participation are well documented, less is known about motivations for Alzheimer's disease clinical research participation. The purpose of this study was to explore what motivates individuals-who ultimately develop an ongoing connection to research and frequently participate-to engage and stay involved in Alzheimer's disease research.

Research design and methods: Individuals who had participated in multiple Alzheimer's disease-related clinical trials, or their study partners, were interviewed about their decisions to engage and remain in research.

Findings: Interviews were completed with 33 individuals, 28 research participants, and 5 study partners. All interviews were audio-recorded and transcribed verbatim for analysis. Respondents indicated learning about research opportunities through the media, community events, doctors, and other research participants. While many were initially motivated by a family history or knowing someone with Alzheimer's disease, others had no personal exposure. Individuals in prevention studies were generally proactive and viewed research as a constructive way to address memory concerns. While several individuals acknowledged personal benefits of research participation, most indicated an understanding of the importance of research and being motivated to help others in the future, frequently referencing a sense of social responsibility or moral obligation to help. Positive relationships with personnel at the site encouraged continued involvement.

Discussion and implications: These findings suggest that efforts to identify research participants should highlight the value of research and help illuminate how participation may contribute to well-being of future generations.

Keywords: Participant experiences; Recruitment; Research engagement; Retention.

Figure 1.

Coding illustration. Text sample: I heard about it I think on NPR and it just … one of the things that probably scares me the most is Alzheimer’s, I’d rather have cancer actually. Losing my ability to think is losing who I am. So my first interest was finding out if I had a propensity for Alzheimer’s. Step 1. Line by line coding—In this process, each discrete idea is identified, as indicated by the slashes below: I heard about it I think on NPR/ and it just … one of the things that probably scares me the most is Alzheimer’s, I’d rather have cancer actually./ Losing my ability to think is losing who I am./ So my first interest was finding out if I had a propensity for Alzheimer’s. For each of these ideas, codes reflecting these ideas were jotted down. For instance, the first phrase was coded as, “learned about the opportunity –radio.” Step 2. Codebook generation—Codes were then compiled into lists and grouped conceptually in a codebook. For instance, all instance of how individuals learned about the research opportunities were listed and grouped together, including the radio example from above as well as from community events, doctors, etc. Step 3. Axial coding and clustering of concepts and themes—As coding continued, it became clear that radio was one example of “media” more broadly, and these codes then got grouped together within a media category. The resulting codes were used to code subsequent interviews and to recode previous interviews. For instance, when recoding the previous interview, the media code would now be applied as well. As coding continued, awareness of opportunity was identified as part of a larger concept of outside mediators that relate to participation. Throughout the process of coding, the conceptual organization was reevaluated against prior and subsequent interviews, concepts were moved around as needed, and the codebook was continually refined. While listed as three distinct, sequential steps, these steps were iterative and recursive, and led to a constant comparison between interviews, codes, and categories and themes. Codes and the codebook evolved throughout the above process and as they were reviewed by the other interviewers. Multiple clustering approaches were explored to find the final framework that best reflected the participants’ experiences and fit the data.

Figure 2.

The AMOR (activators, motivators, outside mediators, reenforcers) model of research engagement.