Ability and Willingness to Participate in Dementia Clinical Research: A Qualitative Study

Nicole Bouranis (), Sherril Gelmon and Allison Lindauer
Additional contact information
Nicole Bouranis: Oregon Health & Science University—Portland State University School of Public Health
Sherril Gelmon: Oregon Health & Science University—Portland State University School of Public Health
Allison Lindauer: Oregon Health & Science University—Portland State University School of Public Health

The Patient: Patient-Centered Outcomes Research, 2023, vol. 16, issue 3, No 8, 277-285

Abstract: Abstract Background and Objective Dementia 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. Methods In 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. Results Ten 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. Conclusions When 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.

Date: 2023
References: View complete reference list from CitEc
Citations:

Downloads: (external link)
http://link.springer.com/10.1007/s40271-023-00621-2 Abstract (text/html)
Access to the full text of the articles in this series is restricted.

Related works:
This item may be available elsewhere in EconPapers: Search for items with the same title.

Export reference: BibTeX RIS (EndNote, ProCite, RefMan) HTML/Text

Persistent link: https://EconPapers.repec.org/RePEc:spr:patien:v:16:y:2023:i:3:d:10.1007_s40271-023-00621-2

Ordering information: This journal article can be ordered from
http://www.springer.com/economics/journal/40271

DOI: 10.1007/s40271-023-00621-2

Access Statistics for this article

The Patient: Patient-Centered Outcomes Research is currently edited by Christopher I. Carswell

More articles in The Patient: Patient-Centered Outcomes Research from Springer, International Academy of Health Preference Research
Bibliographic data for series maintained by Sonal Shukla () and Springer Nature Abstracting and Indexing ().