scholarly journals Insights From African American Older Adults on Brain Health Research Engagement: “Need to See the Need”

2020 ◽  
pp. 073346482090200
Author(s):  
Shoshana H. Bardach ◽  
Markeda Yarbrough ◽  
Charlene Walker ◽  
Doris L. Alfred ◽  
Eseosa Ighodaro ◽  
...  
Keyword(s):  
Older Adults ◽  
African American ◽  
Health Research ◽  
Research Participation ◽  
Elevated Risk ◽  
Brain Health ◽  
Research Engagement ◽  
Disease Research ◽  
Dementia Research ◽  
Barriers And Opportunities

African Americans (AAs) have an elevated risk of developing dementia, yet are underrepresented in clinical research. This project uses a community-engaged photovoice approach to add to existing understanding of barriers and facilitators to AA participation in Alzheimer’s disease research and identify strategies to enhance engagement. Three AA research advocates served as community facilitators to identify and guide groups of AA adults through an eight to nine session photovoice project. Group sessions involved discussions and sharing of images pertaining to various prompts in the area of brain health and research participation. Sessions were audiotaped and transcribed verbatim. Participants identified three categories of barriers to AA research participation: (a) Mistrust, (b) avoidance and fear of acknowledging problems, and (c) seeing the risks of research but not the need. Participants shared suggestions and approaches for ameliorating each of these barriers. This process revealed unique insights into barriers and opportunities for increasing AA engagement in aging and dementia research.

scholarly journals INSIGHTS FROM AFRICAN AMERICAN OLDER ADULTS ON BRAIN HEALTH RESEARCH ENGAGEMENT: NEED TO SEE THE NEED

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S433-S434 ◽  
Author(s):  
Shani H Bardach ◽  
Markeda Yarbrough ◽  
Charlene Walker ◽  
Doris L Alfred ◽  
Eseosa Ighodaro ◽  
...  
Keyword(s):  
African American ◽  
Brain Aging ◽  
Research Participation ◽  
Brain Health ◽  
Aging Research ◽  
Research Engagement ◽  
Novel Approach ◽  
Engagement Process ◽  
Barriers And Opportunities ◽  
Clinical Research Trials

Abstract Recruitment of African American (AA) participants into clinical research trials in the area of aging and dementia is a major problem facing the field. Although AAs are at a significantly elevated risk of developing Alzheimer’s disease (AD), they are underrepresented in clinical trials and research studies. While previous research has identified a number of barriers to participation, relatively little is known about how to overcome these barriers and engage AA individuals in research. Photovoice may provide a novel approach to advance our understanding of AA perceptions in regards to barriers and strategies to increase AA engagement in brain aging research. The purpose of this project is to add to existing understanding of barriers and facilitators and identify strategies to enhance engagement. Three AA research advocates served as community facilitators to identify and guide groups of AA adults though an 8-10 session photovoice project. Group sessions involved discussions and sharing of images pertaining to various prompts in the area of brain health and research participation. Sessions were audio-taped and transcribed verbatim and photos were uploaded. Participants identified four categories of barriers to AA research participation: Mistrust, the belief that all research involves medication, avoidance and fear of acknowledging problems, and seeing the risks of research but not the need. Participants had various suggestions and approaches for ameliorating each of these barriers. This photovoice community engagement process revealed unique insights into barriers and opportunities for increasing AA engagement in brain aging research.

scholarly journals Perspectives of African American Older Adults on Brain Health

2019 ◽  
Vol 33 (4) ◽  
pp. 354-358
Author(s):  
Shoshana H. Bardach ◽  
Beverly Benton ◽  
Charlene Walker ◽  
Doris Love Alfred ◽  
Eseosa Ighodaro ◽  
...  
Keyword(s):  
Older Adults ◽  
African American ◽  
Brain Health ◽  
African American Older Adults

scholarly journals A Relationship-Oriented Model of Research Participation: The Brain Health Community Registry

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 625-625
Author(s):  
Andrea Gilmore Bykovskyi ◽  
Haley Fuhr ◽  
Shannon Mullen ◽  
Laura Block ◽  
Clark Benson ◽  
...  
Keyword(s):  
Social Determinants ◽  
Unmet Needs ◽  
Research Participation ◽  
Assessment Tools ◽  
Systematic Evaluation ◽  
Preliminary Evaluation ◽  
Brain Health ◽  
Research Engagement ◽  
Health Community ◽  
The Brain

Abstract Historically excluded and minoritized populations are significantly under-included in health studies of Alzheimer’s disease and related dementias (ADRD) despite bearing a disproportionate burden of disease—evidenced by higher incidence, prevalence, and poorer health outcomes. Meaningful progress toward identifying and alleviating causes of health disparities in ADRD necessitate effective and scalable approaches for broadening inclusion in research. Rigorous studies evaluating research participation among minoritized populations are limited and have predominantly focused on individual-level factors and behavioral change (i.e. religiosity, willingness). These approaches frequently overlook the influence of unequally distributed structural and social determinants on participation despite the compounded financial, social, emotional, and logistical consequences that result from ADRD. Using an intersectional and social justice lens, we developed the Participant and Relationship-Oriented Research Engagement Model, which characterizes research as a form of relationship and extends social determinants frameworks to the context of research participation. We report core components of the model and its application in the design and preliminary evaluation of the Brain Health Community (BHC) Registry, which features proactive and systematic evaluation of potential unmet needs among prospective participants, and connections to relevant services (i.e. respite care, adaptive devices). Preliminary testing of the model and participant feedback on the BHC suggest it is a feasible approach to research engagement, and that associated assessment tools and resource protocols are acceptable and sufficiently adaptable to heterogeneous sets of unmet needs. Primary challenges include ongoing assessment of engagement and routine changes in service ability, which can be addressed through community-based resource networks.

scholarly journals A New Normal? Continued Impact of COVID19 on Alzheimer’s Clinical Trials Research

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 137-137
Author(s):  
Elizabeth Rhodus ◽  
Allison Gibson ◽  
Shoshana Bardach ◽  
Erin Abner ◽  
Gregory Jicha
Keyword(s):  
Alzheimer’S Disease ◽  
Older Adults ◽  
Alzheimer's Disease ◽  
Clinical Trials ◽  
Race And Ethnicity ◽  
Future Research ◽  
Research Engagement ◽  
Disease Research ◽  
Study Planning ◽  
Psychosocial Implications

Abstract The COVID-19 pandemic has led to unprecedented challenges in Alzheimer’s disease and related dementias (ADRD) clinical trials research. Scientists continue to grapple with the potential and multifaceted consequences of COVID-19. This presentation will discuss strategies used at a U.S. Alzheimer’s Disease Research Center to implement virtual methods to counter COVID-19’s impact on safety for continued research engagement; address the disparate impact by age, race, and ethnicity for online accessibility; and plans for virtual engagement in future research. As scientists navigate lasting implications of COVID-19, future study planning, design, and management will likely be altered. Specifically, increased awareness of participant-centered approaches, inclusion of psychosocial implications, and focus on ways to meet older adults’ unique needs of virtual accessibility will be needed. We must be intentional to counter COVID-19’s lasting impact on ADRD clinical trials research while maintaining rigor and reproducibility to uphold and progress advances toward treatment and cures for ADRD.

Comfort with proxy consent to research involving decisionally impaired older adults: do type of proxy and risk-benefit profile matter?

2011 ◽  
Vol 23 (9) ◽  
pp. 1479-1488 ◽  
Author(s):  
Marie-France Dubois ◽  
Gina Bravo ◽  
Janice Graham ◽  
Sheila Wildeman ◽  
Carole Cohen ◽  
...  
Keyword(s):  
Older Adults ◽  
Informal Caregivers ◽  
Research Participation ◽  
Low Risk ◽  
Board Members ◽  
Proxy Consent ◽  
People With Dementia ◽  
Random Samples ◽  
Dementia Research ◽  
Canadian Provinces

ABSTRACTBackground: Dementia research often requires the participation of people with dementia. Obtaining informed consent is problematic when potential participants lack the capacity to provide it. We investigated comfort with proxy consent to research involving older adults deemed incapable of this decision, and examined if comfort varies with the type of proxy and the study's risk-benefit profile.Methods: We surveyed random samples of five relevant groups (older adults, informal caregivers, physicians, researchers in aging, and Research Ethics Board members) from four Canadian provinces. Respondents were presented with scenarios involving four types of proxies (non-assigned, designated in a healthcare advance directive with or without instructions specific to research participation, and court-appointed). Given a series of risk-benefit profiles, respondents indicated whether they were comfortable with proxy consent to research for each scenario.Results: Two percent of the respondents felt proxy consent should never be allowed. In all groups, comfort depended far more on the risk-benefit profile associated with the research scenario than with type of proxy. For research involving little or no risk and potential personal benefits, over 90% of the respondents felt comfortable with substitute consent by a designated or court-appointed proxy while 80% were at ease with a non-assigned proxy. For studies involving serious risks with potentially greater personal benefits, older adults and informal caregivers were less comfortable with proxy consent.Conclusions: A large majority of Canadians are comfortable with proxy consent for low-risk research. Further work is needed to establish what kinds of research are considered to be low risk.

scholarly journals Preliminary Efficacy of a Recruitment Educational Strategy on Alzheimer’s Disease Knowledge, Research Participation Attitudes, and Enrollment Among Hispanics

2019 ◽  
Vol 18 (3) ◽  
pp. 144-149 ◽  
Author(s):  
Jaime Perales-Puchalt ◽  
Ashley Shaw ◽  
Jerrihlyn L. McGee ◽  
W. Todd Moore ◽  
Ladson Hinton ◽  
...  
Keyword(s):  
Older Adults ◽  
Clinical Research ◽  
Research Participation ◽  
Recruitment Strategy ◽  
Educational Strategy ◽  
Disease Knowledge ◽  
Culturally Tailored ◽  
Contact Information ◽  
Dementia Research ◽  
Dementia Education

Introduction: Hispanics remain underrepresented in dementia clinical research. This one-arm trial aimed to assess the preliminary efficacy of a culturally tailored recruitment educational strategy among Hispanic older adults on dementia knowledge, research participation attitudes, and enrollment. Method: The recruitment strategy included 6 one-session culturally tailored dementia education events at trusted community senior centers. Participants received a pre–post survey including a 5-point Likert-type scale and the Epidemiology/Etiology Disease Scale to assess dementia knowledge, and a 4-point Likert-type scale assessing research participation attitudes. We gave participants contact information slips to complete if interested in dementia research. We also tracked participants’ enrollment into the National Alzheimer’s Coordinating Center Cohort. Results: Dementia knowledge increased 0.9 points (5-point Likert-type scale) and 2.2 points (epidemiology/etiology disease scale, p < .001). Interest in participating in dementia research increased from 61.7% to 80.9% ( p = .039), 64.0% returned their contact information slips, and 41.1% successfully enrolled into the National Alzheimer’s Coordinating Center Cohort. Conclusion: A recruitment strategy including culturally tailored dementia education improves dementia knowledge, research participation attitudes, and enrollment among Hispanic older adults.

scholarly journals Building and Sustaining a Community Advisory Board of African American Older Adults for Volunteer Research

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 844-844
Author(s):  
Jamie Mitchell ◽  
Tam Perry ◽  
Vicki Johnson-Lawrence ◽  
Vanessa Rorai
Keyword(s):  
Older Adults ◽  
African American ◽  
Behavioral Health ◽  
Research Participation ◽  
Advisory Board ◽  
Community Advisory Board ◽  
Aging Research ◽  
Research Recruitment ◽  
Ongoing Training ◽  
Health Related Research

Abstract Older African Americans’ (AA) participation in health-related research is severely limited; they are not involved in sufficient numbers and for sufficient duration to ensure the applicability of advancements in medical and behavioral health. This research participation gap exacerbates older AAs vulnerability to poor health outcomes and disparities. The Michigan Center for Urban African American Aging Research employs a progressive community-based participatory model that utilizes a structured community advisory board (CAB) of older AAs in metro Detroit to oversee the research recruitment and retention of fellow AA older adult research participants. CAB members are provided ongoing training on social and behavioral health research, supported in acting as a consultancy to outside researchers where they can be compensated for their expertise and engagement, and empowered as gatekeepers of a participant research registry of over 1000 AA older adults. This model has broad potential for advancing community engaged research with AA older adults.

scholarly journals Music and Brain Health: Recommendations From the Global Council on Brain Health, an AARP Collaborative

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 783-784
Author(s):  
Sarah Lock
Keyword(s):  
Older Adults ◽  
Behavior Change ◽  
Health Research ◽  
Evidence Based ◽  
Brain Health ◽  
Music Participation ◽  
The Public ◽  
The World ◽  
The Impact ◽  
Consensus Report

Abstract Music is a complex auditory stimulus that resonates on a physiological, psychological, and spiritual level for people around the world. This symposium will provide highlights from the Global Council on Brain Health consensus report aimed at helping the public to understand the potential that music holds for supporting and enriching brain health. The Global Council on Brain Health (GCBH) is an independent collaborative of scientists, clinicians, scholars, and policy experts convened by AARP to provide evidence-based advice on what people and professionals can do to maintain and improve brain health. The Council translates scientific research into actionable recommendations for the public that will help drive behavior change in individuals across communities and cultures. Issue specialists from around the world were brought together to build consensus, issue recommendations, and offer practical tips. Moreover, we will feature research from our issue experts and provide an overview of the impact of music participation on older adults, including those with dementia. Data from surveys fielded by AARP research, developed in consultation with the GCBH, will also be featured. In sum, this presentation will highlight the work of the Council at the forefront of this international effort to translate advancements in brain health research to the wider public, with an emphasis on individuals aged50 and older.

scholarly journals Perceptions and Preferences Regarding Multiple Sclerosis Research Among Racial and Ethnic Groups

2021 ◽  
Author(s):  
Daniela A. Pimentel Maldonado ◽  
April Moreno ◽  
Mitzi J. Williams ◽  
Lilyana Amezcua ◽  
Shawn Feliciano ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
African American ◽  
Ethnic Groups ◽  
Legal Status ◽  
Minority Groups ◽  
Quality Care ◽  
Strong Support ◽  
Research Participation ◽  
Poor Quality ◽  
Research Engagement

Abstract Background: For unclear reasons, minorities have been historically underrepresented in multiple sclerosis (MS) clinical trials. We hypothesized that different perceptions and preferences about research participation among racial and ethnic groups contribute to this imbalance. Methods: Members of the MS Minority Research Engagement Partnership Network developed a Web-based survey in English and Spanish on research impressions, concerns, and preferences regarding study attributes among people with MS. Invitations to take the survey were distributed by network members and partner organizations. Results: We included 2599 participants with MS (2111 White, 215 African American; 188 Hispanic). Consistently disliked study attributes included potential harms to health and confusing study information. Compared with White and non-Hispanic participants, respectively, African American (odds ratio [OR] = 2.05, P ≤ .001) and Hispanic (OR = 1.79, P = .003) participants were more concerned about being used by the research team. Hispanic participants were more concerned about research participation carrying risks to their legal status (OR = 1.70, P = .001). Hispanic (OR = 3.18, P ≤ .001) and African American (OR = 5.51, P ≤ .001) participants were more likely to prefer for the study to benefit their own racial/ethnic group. A top concern across all groups was not being fully informed about the research. Conclusions: We found strong support for research across racial and ethnic groups; however, minority groups have specific concerns regarding mistrust, receiving poor-quality care, unemployment, health insurance, and legal status. Investigators wanting to recruit a diverse study population are advised to show how they have addressed these concerns and to communicate how the research will advance the science and literature and result in better care and/or other benefits to underrepresented communities.

scholarly journals A systematic review of randomized trials for engaging socially disadvantaged groups in health research: A distillation approach

2019 ◽  
Author(s):  
Michael C Mullarkey ◽  
Mallory Dobias ◽  
Alyssa Maron ◽  
Sarah Kate Bearman
Keyword(s):  
Systematic Review ◽  
Community Engagement ◽  
Health Research ◽  
Research Participation ◽  
Research Process ◽  
Targeted Interventions ◽  
Research Engagement ◽  
Disadvantaged Groups ◽  
Socially Disadvantaged ◽  
Engagement Interventions

Research that fails to include sufficient representation from socially disadvantaged groups cannot make strong inferences about those groups. This relative lack of knowledge poses theoretical and clinical problems for health research. More effective community engagement with socially disadvantaged groups is often proposed as a way to increase research engagement. However, community engagement is a heterogeneous construct, including everything from how participants are contacted to whether researchers work with an organization within the community. Further, community engagement efforts vary widely in their effectiveness in recruiting and retaining participants from socially disadvantaged groups. Therefore, some types of community engagement may be more effective than others. We conducted a systematic review of randomized controlled trials attempting to increase recruitment or retention of socially disadvantaged groups. We then applied systematic distillation procedures to examine which components of community engagement interventions were associated with successful recruitment or retention outcomes. Generally, we found research process related variables (e.g. having a systematic contact plan) most frequently differentiated effective vs. ineffective recruitment or retention outcomes. Partial associations between components in effective interventions, including negative associations, were descriptively stronger than partial associations in the ineffective interventions, indicating targeted interventions may be more effective than more generalized interventions. The literature was also relatively sparse and at unclear-to-high-risk for bias. Future pre-registered, research process-oriented, and targeted recruitment and retention interventions may increase the research participation of socially disadvantaged groups in health research.

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