Journal article
Ability and Willingness to Participate in Dementia Clinical Research: A Qualitative Study
PATIENT-PATIENT CENTERED OUTCOMES RESEARCH, v 16(3)
May 2023
PMID: 36988818
Featured in Collection : UN Sustainable Development Goals @ Drexel
Abstract
Background and ObjectiveDementia clinical research studies have difficulty recruiting and enrolling participants and their study partners. Through convening and working with a community advisory board and the incorporation of the perspectives of people living with dementia and caregivers, this study utilized a community-engaged approach to identify factors affecting dementia clinical research participation.MethodsIn this qualitative study, 24 participants (12 people living with dementia and 12 caregivers), half of whom participated in dementia clinical research, were interviewed. Deductive and inductive approaches to thematic analysis were conducted to identify themes.ResultsTen themes were organized into two categories. Factors affecting ability to participate include symptom recognition and diagnosis, knowledge of opportunities, ineligibility/disenrollment, time/distance, caregiver burden, and online searches for study opportunities. Factors affecting willingness to participate include helping others, living life to the fullest, caregiver support, and taking study drugs.ConclusionsWhen combined with a reframing of factors affecting dementia clinical research enrollment within the context of ability and willingness to participate, these findings may be useful for elucidating factors and developing strategies to enhance participation in clinical research and advance efforts dedicated to finding effective treatments for dementia.
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Details
- Title
- Ability and Willingness to Participate in Dementia Clinical Research: A Qualitative Study
- Publication Details
- PATIENT-PATIENT CENTERED OUTCOMES RESEARCH, v 16(3)
- Publisher
- ADIS INT LTD; NORTHCOTE
- Grant note
- The authors would like to thank the Bouranis Community Advisory Board, the study participants, and Dr. Bouranis's dissertation committee advisors (Dawn Richardson, Elizabeth Needham Waddell, and Hyeyoung Woo) for their contributions to this article. This study was supported, in part, by Oregonians through the Alzheimer's Disease Research Fund of the Oregon Charitable Checkoff Program.
- Resource Type
- Journal article
- Language
- English
- Academic Unit
- Drexel University
- Web of Science ID
- WOS:000960454300001
- Scopus ID
- 2-s2.0-85151278380
- Other Identifier
- 991021861170504721
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- Collaboration types
- Domestic collaboration
- Web of Science research areas
- Health Care Sciences & Services
- Health Policy & Services