期刊
JOURNAL OF ALZHEIMERS DISEASE
卷 90, 期 3, 页码 1021-1033出版社
IOS PRESS
DOI: 10.3233/JAD-220061
关键词
Alzheimer's disease; ethics; registries; research; research design
资金
- Institute for Translational Medicine and Therapeutics of the Perelman School of Medicine at the University of Pennsylvania
- National Center for Advancing Translational Sciences of the National Institutes of Health [UL1TR001878]
- National Institute on Aging [P30-AG-010124, P30-AG072979]
- National Institute on Aging (NIA) [K01-AG064123, P30AG066519, U24AG057437]
- Greenwall Faculty Scholar Award
- NCATS [UL1TR001414]
The requirement of having a study partner in AD prevention studies creates a barrier for potential participants. However, most potential participants identified someone who could serve as their study partner. They recognized the value of the role but also acknowledged the potential burdens it may entail.
Background: Participants in Alzheimer's disease (AD) prevention studies are generally required to enroll with a study partner; this requirement constitutes a barrier to enrollment for some otherwise interested individuals. Analysis of dyads enrolled in actual AD trials suggests that the study partner requirement shapes the population under study. Objective: To understand if individuals can identify someone to serve as their study partner and whether they would be willing to ask that individual. Methods: We conducted semi-structured interviews with cognitively unimpaired, English-speaking older adults who had previously expressed interest in AD research by signing up for a research registry. We also interviewed their likely study partners. Audio-recorded interviews were transcribed and coded in an iterative, team-based process guided by a content analysis approach. Results: We interviewed 60 potential research participants and 17 likely study partners. Most potential participants identified one or two individuals they would be willing to ask to serve as their study partner. Interviewees saw value in the study partner role but also understood it to entail burdens that could make participation as a study partner difficult. The role was seen as relatively more burdensome for individuals still in the workforce or with family responsibilities. Calls from the researcher to discuss the importance of the role and the possibility of virtual visits were identified as potential strategies for increasing study partner availability. Conclusion: Efforts to increase recruitment, particularly representative recruitment, of participants for AD prevention studies should reduce barriers to participation by thoughtfully designing the study partner role.
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