Willingness to Participate in Clinical Research Among Individuals With Cognitive Impairment

Abstract

This secondary analysis examined (1) factors associated with willingness to participate in clinical research for cognitive health among individuals with cognitive impairment and their care partners, and (2) concordance regarding such willingness between individuals with cognitive impairment and their care partners (dyads). Neuropsychological factors and willingness to participate in clinical research were collected using self-reported questionnaires. Participants' sociodemographic and clinical information was extracted from the University of Pittsburgh Alzheimer's Disease Research Center record. Binary logistic regression and Cohen's kappa coefficient analyses were performed. Greater trust in medical researchers ( p = 0.031, B = 0.127) and more severe cognitive impairment ( p = 0.009, B = −0.289) were associated with willingness to participate in clinical research among individuals with cognitive impairment. Dyadic agreement on willingness to have the individual with cognitive impairment enroll in clinical research was poor to fair (κ = 0.380). Findings suggest that individuals with cognitive impairment with greater trust in health professionals are more likely to agree to clinical research participation. Nurses and other health care providers who counsel individuals with cognitive impairment and their care partners should work to build trusting relationships with participants and be mindful of how increased trust can alter power dynamics between participants and health care professionals. [ Research in Gerontological Nursing, 15 (2), 76–84.]

Making an Advance Research Directive: An Interview Study with Adults Aged 55 and Older with Interests in Dementia Research

“…It provides insights into the views of “research‐engaged” individuals, mostly recruited through a dementia research registry, who reported positive attitudes toward research and were mostly people who had taken part in previous studies. Such characteristics are associated with willingness to participate in dementia research, 23 and research‐engaged people are a principal group to whom advance research planning initiatives should be directed. Our study contributes insights on the preferences such individuals would express in an ARD and how they would want their ARD used during potential future periods of decisional incapacity.…”

“…People considering advance research planning may benefit from additional resources on drug studies—and other research that may be perceived as riskier—to inform their choices. This is important to ensure that people are aware of safety and ethical protections and also understand the differences between clinical care and research to avoid therapeutic misconception 42 …”

“…6 Studies show discrepancies between the research preferences of people with dementia and their carers or proxies. 7 Advance planning for research is advocated for as a strategy to overcome some of the barriers to research participation, especially for people with dementia. 8 Advance research planning is a process that involves thinking about, discussing, and expressing preferences for taking part in research during potential future periods of decisional incapacity.…”

“…People who have family members or kin‐like friends available to serve in proxy decision‐making roles have often not discussed their values and wishes in relation to research participation 6 . Studies show discrepancies between the research preferences of people with dementia and their carers or proxies 7 …”

Social cognition in young adults who have a first-degree relative with schizophrenia: A preliminary case series study

“…It is possible that people with lower socialcognitive abilities may not be drawn to take part in research. Prior research has demonstrated that people with cognitive impairments are less willing to participate in clinical research and that these individuals tend to be difficult to recruit for study participation (Li et al, 2022). A larger number of participants recruited from different settings is needed to adequately assess social cognition in young people at FHR.…”